Baseballs, Butterflies, & Blessings

How We Celebrate a Messianic Passover Seder

2016-03-25T00:16:00.000-05:00

Several years ago, we began to celebrate the Passover Seder as a little family. I have participated in several full length Seder meals and it is always a profound experience for me. I wanted to incorporate that experience into our family's Holy Week traditions and it has become my favorite part of the week.

Holy Week is a heavy week for me. Even Lent is often overshadowed by pain and heartache. Four friends of mine have buried their children during the Lent season - I've grieved with and for these precious mamas and their children. One year, our daughter was in her second spica (body) cast during Holy Week. Taking care of a baby in a spica is exhausting. The cast came off Good Friday that year and her skin was raw and tender for several days. Raw and tender seems a fitting description for Easter week. Last year, after 19 grueling days of pain and sleeplessness, one of our kids was diagnosed with Perthes Disease (a very painful bone disease.) That diagnosis came Easter week. We spent Good Friday in a pediatric hospital in Dallas. It was painful emotionally for us and physically for our child. We were raw and a year later, I'm not sure we've recovered. Here we are again, hours away from Good Friday and we will find ourselves remembering the cross and practicing silence and also finalizing a very difficult medical decision for our daughter in the morning. Meanwhile, I find myself carrying her often this week and searching for medicines as once again she is in pain and in a flareup of the disease. Holy Week has marked us. It seems to be clouded in pain for our family. We pause and perhaps the pain of disease forces us to pause more often - I find myself reflecting more on Jesus and remembering the events of Holy Week.

Part of why I so enjoy the Seder experience is the way it involves children. The children have specific roles in the meal and I love the emphasis on family, the value placed on women and children. It seems unique to me that an ancient culture would so clearly value women and children. I also enjoy preparing for it. Perhaps more than any other holiday event, I study for the Passover. I read guides and articles and books. I listen to the traditional music and research and write and plan. I love the parallels between the traditional rituals and the Resurrection. Mostly, I love the imagery and imagining Jesus at the Last Supper - listening to these same songs, saying these same words and knowing He too participated in the Seder - just before His arrest. I love the radical introduction of the Eucharist and the emphasis on love and service as demonstrated in the washing of His disciples' feet.

After studying the Passover Seder, so much more of the events of Easter make sense. When you understand the traditions a little, it makes sense for why the introduction of the Eucharist was radical. When I realized the meal involves 4 glasses of red wine and a 4+ hour meal, it makes sense that the disciples were sleepy in the middle of the night at the Garden of Gethsamane. Developing a better understanding for the significance and cultural context for the Last Supper has been very formative for my faith in recent years.

So for our little family, bedtime is also sacred. :) The actual Passover Seder meal would take approx 4-5 hours starting at sunset and ending around midnight. We start ours a bit earlier because hungry children and spend 1-2 hours. By combining the eating with the rituals, it does shorten it a bit.

Technically, a Messianic Passover Seder should occur on Maundy Thursday. We sometimes do ours on Good Friday depending on schedules and conflicts and the week. (We live in freedom so sometimes it has to happen on a different day.) I've done it without the meal or with a modified meal. I've done it with fish and this year we are doing it with lamb. It was a struggle for me to purchase the lamb. I don't eat much meat and was honestly rather disgusted by the bloodiness of it. Plus it was costly. But as I wavered and considered other options at the butcher, I felt a strong conviction to purchase the lamb this year and focus on the bloodiness and cost and involve my children more in the process of preparing it. I don't think lamb must be used - there are certainly other options but lamb is the traditional food.

As we prepared the lamb with marinade, Ellie commented "Mommy, I'm so sad this lamb had to die for us. It's so bloody." I realized then that it was the right decision to go with lamb this year. We needed to be confronted with the blood and imagery of the lamb. The phrase "Lamb of God" is far more powerful for our family tonight.

Other components of the Passover meal include:
Maror (bitter herbs- ground horseradish or romaine lettuce stems or even arugula)
Matzo (delicious crackers - my kids eat these year round. My grocery store no longer carries them but Amazon does and they arrived on my front porch yesterday.:))
Salt Water (just a small bowl)
hard boiled egg (shell on)
Fresh parsley
Lamb or fish (I roast the lamb. Marinade it overnight in lemon zest, olive oil, salt and pepper, lemon juice, dijon mustard, rosemary & honey)
Charoset (apple slices mixed with plain Greek yogurt, walnuts & raisins & a little wine/juice)
Bone of lamb (butcher always is surprised when I order this)
Small bowl for hand washing, extra napkins and large bowl and towel for foot washing
White towel (I use a flour sack kitchen towel)
Wine (red) &/or grape juice (We use both.) Each person will drink 4 glasses - so buy enough. You can use small servings.

Silverware is not needed (kids are thrilled!) Wine glasses are needed. Extra napkins are also needed. This year, I managed to get some leftover palm branches from Palm Sunday and will be using those on our table as placemats. The closing of the Seder reflects back to Palm Sunday and I want to remember that with our children. (the Hallel)

I bought a Passover plate last year that I love (off Amazon) but I've also used a plain white dish for displaying the food components. We've sometimes placed it on the coffee table and reclined as is traditional. This year, we are using our kitchen table but incorporating pillows to remember the act of reclining.

I have found that it is very doable to practice a Messianic Seder meal. It doesn't have to be complicated or a production. The foods are very simple (remember, these same foods have been used for thousands of years and prepared long before the invention of our modern appliances - they are designed to be meaningful yet simple.) You can make it work for your family and if you are interested at all, I would so encourage you to try a Seder. It is a beautiful way to begin Easter weekend and tie the Resurrection into the Last Supper.

Resources I've found helpful:

The Messianic Passover Seder Preparation Guide (a short booklet that clearly explains food items and table set up and includes a few simple recipes.)

Jennifer Dukes Lee - A Messianic Passover Seder for Families with Children
*I've also used Ann Voskamp's guide. I found Ann's a little over my kids' heads. Jennifer Dukes Lee's is very easy to follow and clearly written. I added a few things for our family that I didn't want to miss and created notecards using her guide as a basis. My notecards can easily sit at each person's seat to help easily guide us through the rituals without the distraction of flipping papers or losing our place in a lengthy guide. Also, writing out the notecards helps me to learn the format and key ideas of the meal. The traditional Seder includes singing and dancing so we also include dancing (my kids love a dance party and some of the Hebrew music definitely inspires dancing!)

A Bible. We will be using The Jesus Storybook Bible to read the story of the Last Supper with our kids.

Ann Voskamp - The Best Easter Dinner (How to Start a Christian Tradition Messianic Seder) -beautifully written guide

24 Hours That Changed the World by Adam Hamilton. We are studying this in our Sunday School class but I must admit I've read ahead this week. His research and insight have been fascinating to me this week as we prepare for Holy Week.

I absolutely loved Janet Denison's article about how to talk to kids about "Why did a good 'Dad' let them kill his Son?" She uses scripture and wisdom to wrestle with some tough questions that especially inquisitive kids may ask as you dive deeper into understanding the Passion. My favorite line? "The first thing every parent must teach a child is that God can be trusted, even though He is difficult to understand." Print this out and tuck it somewhere safe to reference during those hard conversations. (Good for adults too, actually.)

The Book of Common Prayer for Ordinary Radicals

Music - a Celebration of the Passover Seder (there's a MP3 file that you can play on the Amazon Music app)

Tomorrow, I hope to share the three most fascinating insights I've learned this year as I've prepared for our Passover Seder meal.

GOOOOOOOOAL!

2015-09-05T22:12:00.001-05:00

Today was Will's first soccer game of the season. He's playing for a new team and a new organization this Fall - Upwards Soccer. I've heard of Upwards but I had never looked into it. For months, Will has been into soccer and practicing outside all the time. It's the thing many of the boys play at recess and he was so excited when our friends visiting from Uganda gave him some coaching in our backyard. But, I still didn't pursue getting him on a team.

Until, one afternoon in the middle of the summer when our friend and amazing carpenter Joseph came by. Will was sitting on the couch and Joseph - a young soccer coach and not Will's dad or Will's friend's dad or anyone with any obligation to Will, intentionally invited Will to try out for his soccer team. I stood in my kitchen (tears in my eyes) as I watched my son's chest swell with pride and his self confidence soar... a real soccer coach wanted him on his team! It was such a powerful testament to the potential power and influence of a coach on a kid's life. By inviting Will to play for him, he did something that neither I nor Reagan nor any of our friends can do. Joseph had no obligation to invite Will. He simply wanted our kiddo and with those words, he made a difference to a little boy. He believed in our son and our kid knew it.

So a few weeks later, Will and his Daddy went to tryouts and Will did great. Due to Will's age, he is actually not on Coach Joseph's team but we've been so impressed with his coach (Coach Larry) and his intentional coaching, teaching, and encouraging of each individual player.

Today, Will played his heart out - in his very old, broken down shoes (new ones ordered last spring still not in!!!) He also played with awful shin splints. Bless his heart - he is supposed to avoid running in these current awful shoes because they were reinforced at the hospital this week to buy us some more time before new ones are ready but we did have special permission for him to play his first game today. He spent several hours resting barefoot with his book this afternoon.

Going for a GOOOOOOAL!

He played his heart out - chasing that ball up and down the field and scored the first goal of the season!!!

He listened to his coaches and followed directions and drank enormous amounts of gatorade.

One of my proudest moments was when he worked as a team to pass the ball to another kid and that kid got a goal. The other kid ran to the coach for high fives and Will went running after that kid and gave him a big congratulatory hug! My heart was full.

Love #3

Afterwards in the players' meeting, the Coach reviewed certain skills and awarded stickers for various skills he noticed displayed during the game. When he announced the first award - "E for Effort" - one player began pointing at Will and insisting it go to Will for playing so hard. Wow! What a great team and sportsmanlike behavior! (Will did in fact get the Effort award.)

Coaches that care, that want kids on their teams and are intentional in building up young players, parents cheering (& laughing because kids soccer is pretty awesome), new friends, and our happy, confident player who wore his jersey all day long with pride...

this soccer season is off to a great start.

Player's huddle - love Will's arm on his coach

First Dance Recital... & Why it Matters

2015-04-25T23:54:00.002-05:00

Today, our Ellie Girl danced in her first dance recital.

After an awful month with a new diagnosis of Perthes Disease in her bone, a flare up causing 19 days of intense pain and immobility and sleeplessness, use of a cane and wheelchair, today I just sat in the dark auditorium in tears of gratitude and relief.

When the flare up began, I didn't know if Ellie would be able to participate in the recital at all.

Today, I watched my daughter dance & sing for 3.5 minutes to Raffi's Baby Beluga and I've never been so happy to hear that song (or relieved to not have to hear it again!)

This morning, I put makeup on my daughter - a little eyeshadow, pink lipstick, blush and lots of sparkles.

Lately she's been telling me "Mommy, you aren't perfect but you're bootiful to me."

I told her she is perfect for me. She wanted to know if she was "bootieful" too. I told her she is so beautiful - she is kind to others, she is tender hearted, she is sweet and smart and hilarious and creative and a thinker and yes, pretty and beautiful.

Today, my daughter was able to dance without her assistant on stage! Today, I remembered being engaged to R and together going to this same studio's dance recital 13 years ago to watch Sarah in her dance recital... our flower girl. Today, she is in high school and has been a brilliant assistant for our Ellie.

Today, my girl danced on stage with her best friends. She was one of the girls - just like her friends. She wasn't different or defined by her abilities. She was just a typical four year old who sometimes missed a step (or few) & loved the stage.

Today, family drove in from all over Texas and we filled lots of seats to cheer for our Ellie girl. 4 grandparents and 2 greats! Oh she is loved!

Her daddy is setting a high standard for boys in her life and brought her a dozen pink roses

Her aunt and uncle surprised her with her first flower delivery!

And grandparents delivered sparkly colorful flowers.

We served lunch of her favorite foods and pink ballerina cupcakes

Recently I was in tears to a dear friend and confessed my fear that Ellie would have to miss her dance recital. My friend asked me if this mattered for Ellie or for me. She was helping me get to the heart of my tears. I thought about it for two seconds. While I knew Ellie would love the stage and attention and costume and makeup, I also knew that she wouldn't know she was missing it if we didn't make a big deal out of it. I get that she's only 4 and the show could go on without her.
So I began to think maybe it was about me.
But I quickly realized that maybe it was about both of us. I've had a lot of "normal" ripped away from our parenting experience and I didn't want one more thing ripped away.
I'm not a dancer nor was I as a kid - not past age 9 at least. I was the girl always in the back row and probably a step or 2 off. And I feel okay about my life without dance abilities - I've had other things to be proud of. So it wasn't about seeing my daughter excel in dance because that was not an area of excellence for me. Seeing my kids excel in any activity is not my expectation - I'd prefer they do things they can enjoy and work on to improve and make friends and take joy from. Rather, it was about seeing my daughter have the opportunity for the experience. I wanted this for her - in part because I fear it may be her only opportunity. I don't know what the next few years will look like as we figure out this bone disease but I fear she may not be able to participate for a few years and that when she is healed and able to fully participate, I fear that the arthrogryposis in her joints will have created a big gap between her and her peers. At age 4, the gap isn't so big - quite a few of the girls couldn't get down and up for the flash step today so she didn't stand out. But that gap will widen and I'm afraid as she gets older that she may not feel comfortable putting herself on stage when her differences are more visible and the steps more technical. I could be totally wrong but I'm trying to think forward and hated to see her miss the opportunity while she had it and while she had worked hard all year for it.
We have tried to parent in such a way that whenever our kids have expressed an interest in an activity, we've worked hard to make that happen. When Will has wanted to try various sports, I call sports recreational therapists and have custom equipment created for him to enable him to participate in the sport. I've called coaches and explained his situation and brainstormed and encouraged them to give him equal opportunities. We've set up meetings for Will to show coaches that he can in fact participate. For dance, I hired Ellie an assistant and found a precious teacher and studio that would be gracious and welcoming and embrace her. We have worked hard behind the scenes to ensure they have the opportunities to dream and achieve and participate.
Our kids are still figuring out their interests - I have no idea what they may excel in but I want them to know that they have options and that we are proud of them for trying things regardless of their level of achievement. It matters to me greatly that they each always know we believed in them. I need my kids to reflect back on their childhoods and their opportunities as evidence that we and their grandparents and their teachers and coaches and peers believed they are worthy and capable. This matters. I want them to be able to participate in conversations with peers - to have shared experiences and say they too have played baseball/soccer/been in plays/danced for that studio in a dance recital/etc. It's another goal of ours that we show their community that they have more similarities than they do differences with others. We do this in part by ensuring they have common experiences.
Mostly, today mattered to me because I believe it will matter to Ellie someday. I believe she needed to see her family rally around her and smile and beam and be so proud of her. I believe she needed to feel beautiful and sparkly and fancy. She loves music and dances around the house and today her spirit came alive on that stage as she danced for the crowd. Today she wasn't the girl with the diagnosis or the disease or the pain. She was another precious little girl on stage dancing her heart out - and she will always remember her first recital. Today, this mama cried tears of gratitude because this recital for my girl mattered - for both of us.

Where We're At- a new diagnosis

2015-04-10T00:25:00.001-05:00

3 Sundays ago, Will woke up sick and so Ellie and I went to church together. After church, I surprised her by rushing across town to take her to see Cinderella. I was the weird mom who kept gettig teary eyes and kissing her during the movie because seeing Cinderella was on my list to do with " Ellie in the Belly" during the uncertain days of our pregnancy when we didn't expect her to live and I was simply overcome with gratitude to be seeing it with her at age 4.5! She really was happy although by the time I took the picture below it was past nap time and she was done. We headed home to our boys and had lovely naps and a long walk together. Ellie took a bad fall during the family walk but was able to recover and the day was just so wonderful.

For the last 19 days, I've relieved that day over and over as the "day before the new diagnosis." It was such a good day with my daughter and I had no idea what was a few hours away.

Monday started like every other school day- rushed! Ellie and I were hanging out at home- doing chores (me), playing babies (Ellie) & hanging out outside on that beautiful spring morning. Ellie was happy and singing and playing so happily. Until suddenly she wasn't. She took a few falls but due to her arthrogryposis, this is normal for Ellie. She has a high pain tolerance and generally recovers quickly. But after the 3rd fall, at 11am, she wasn't recovering. She also wasn't walking. Nor was she crying; she was screaming. I tried my usual tricks to comfort her and get her back to playing but she wasn't able to calm down or bear weight. So I decided we would run a few errands and surely that would distract her (& give me a better idea if something were wrong.) For the first time in my parenting, I had to leave a store due to a screaming child. I tried to carry her like a baby in to the grocery store to get dog food but part way across the parking lot I had to turn around because her screams were unbearable. I waited until 1pm and then called her pedi. At this point, I assumed she had possibly broken her leg due to a fall but I also kept second guessing myself because she has AMC and falls a lot and maybe this was just a weird reaction to a fall. Her dr said to bring her in ASAP. Because I was in denial, I asked if she could nap first ( this was dumb- she was screaming- no way she could have napped!) (I hold nap time very sacred.) After an examination with her pedi in which she screamed at his touch and refused to let me hold her (very unlike her) and wouldn't let us move her from the stroller and screamed in agony when I drove over railroad tracks or hit a pot hole, we knew something was indeed wrong & were sent for xrays. The xrays were clear. So we were given narcotics and told to try to get through the night. We were up all night long & by 8am we were back with the pedi where we ran blood work and began exploring other possibilities. I still thought tiny fracture.

By Tuesday afternoon, we had an appt scheduled in Dallas with a specialist. We were up all night again and on the road to Dallas at Dawn Wednesday. Many nights we considered going to the er but we were told there was nothing they could do to help with the pain except iv. Watching my daughter writhe in agony for hours was gut wrenching. Not being able to comfort her in my usual way by holding or rocking her broke my heart. After more xrays in Dallas, we had a new diagnosis to add to our list- Legg Calve Perthes Disease. It is extremely rare in girls and our specialist who has a classification named after her him and has studied it extensively has never seen it in conjunction with AMC. This seems to result in a lot of unknowns. Also, we learned that Ellie is already a year into the disease progression. This makes sense now as I remember several flare ups of limping, swelling, & pain which I even took her in for and we ran xrays but Perthes refers pain lower in the leg so we didn't catch it. (Not that it would have mattered for the treatment.) One week later, we remained sleepless (except for two glorious nights when grandparents kept E so we could sleep!!), she remained immobile and unable to bear weight, & she continued to experience great pain.

I did find that getting out in the day helped to distract her and lift our spirits.

I tried taking her to school to eat with her class and my parents took her to see Frozen on Ice.

By day 10 of not sleeping, We headed back to Dallas, met the other grandparents there who flew in to offer relief and help, and doctors suggested traction. This caught me off guard and caused me to panic so I quickly googled it and began asking questions. The doctor agreed to let us try modified bed rest first with the understanding that if we didn't see pain relief in a few days we would put her in traction.

The next morning, her rental wheelchair arrived. Seeing my daughter who just 12 days prior had been happily walking and playing to now being in a pediatric wheelchair in our home for the first time was incredibly hard. Words can't describe and I'm not ready to go there on a blog. Also, the rental had fur lined seatbelt covers which I removed immediately because weird! Also gross!

For some reason, perhaps because this disease wasn't on my radar, this has been extremely hard on me. Perhaps it was the unexpectedness or the uncontrollable pain. Certainly the night after night of screaming in pain and sleeplessness didn't help. At all. Perhaps it was because it happened during Lent & my heart was already heavy. We spent Maundy Thursday at the hospital in Dallas. A wheelchair arrived at our home on Good Friday. These last few weeks have felt dark and lonely. I've been afraid and sad and raw. I have felt overwhelmed and past my limit. I have felt abandoned. I had a hard time seeing hope or finding God's hand in this too.

I'm still having lots of feelings and struggling and wrestling with God but I've had sleep this week so my emotions are doing better. Also, taking her in public in the chair hasn't been nearly as difficult as I anticipated. Honestly, I've gotten far more states/questions/rudeness in being in public with a kiddo in prosthetics than with a wheelchair.

We have found lots of activities that can be done sitting down: crafts, bed baronies, doll house, water table, pedicures, and more!

Today, Ellie began to walk! She was on modified bed rest for a week and today felt like she was ready to try standing and walking. She's limping and gets tired easily but I'm so so so thankful to see her upright and pain free and able to move independently again. My heart is feeling lighter again and hope is creeping in. (Sleep makes such a difference.) (maybe so does time- I've had a few weeks to start wrapping my brain around this dx and research and ask questions.) I'm trying to remember that Jesus shows up in the body- when neighbors and friends and family call and text and come visit and drop off dinner- that is God using others to love us well. I am not alone- despite my feelings. We are held close even when we feel alone and raw.

Going forward... I'm not sure. I don't know how often Ellie will experience flare ups. I understand the disease generally lasts 5-7 years. Hopefully she won't need surgery. Hopefully she won't develop arthritis or require an early hip replacement. I assume that now that we have a diagnosis, I can be more aware and sensitive to her pain or events that may require more walking and try to actively prevent a flare up with medication or providing her more opportunities for rest or renting a chair or getting crutches. We go back to her specialist tomorrow so I will know more then. I keep trying to pin down how to feel- I've emailed Dallas pt and I've asked friends and family in an effort to determine if this is minor or a big deal. I find online support groups and entire blogs dedicated to "journeying" with this disease which makes me think it's a big deal.... But compared to my kiddos' other lifelong diagnoses, this disease feels relatively minor. Compared to our friends who are fighting for life- this is nothing. This is doable. I've come to the conclusion that when in the midst of a flare up, it is a big deal because the pain is agony. It can be a big deal when treatment involves no mobility for a previously active child. It feels big to me because Ellie has worked so hard and surpassed so many expectations by being able to walk at all. It feels like another thing ripped away from us. I struggle wondering how this disease may affect her in the next few years. There are ao many unknowns. But. I also believe that when we get her pain under control and when she is able to live her life again (attending school and dance independently, playing outside independently, etc,) then it will become a minor deal. I've lived the reality of seeing my kids with diagnoses that should limit them and don't. Ultimately, I believe Perthes disease will be another part of Ellie's story- a hard part- but it won't define her. I've seen her feisty, sweet, funny personality return this week. I've been given the gift of hope again.

(Sorry- long post!)

(Thanks for sticking around!!)

The Miracle of Speech

2015-02-06T09:56:00.001-06:00

The irony of Will competing and advancing in his first speech meet has not been lost on me. In fact, I may have been the only mom in the audience yesterday with a tear (or 3) in her eye. You see, we've been watching Will's moth and jaw since those scary ultrasounds. Part of his syndrome can include jaw and mouth complications. We began meeting with his pediatric craniofacial surgeon when he was just a few days old in the NICU. He began speech therapy at 3 months old and had 2.5 mouth surgeries by age 2.5. (The half surgery includes that time they put him under anesthesia and realized his jaw wasn't big enough to complete the operation on.) We've traveled as far as Boston (twice) to get second opinions from one of the world's most renowned pedi craniofacial surgeons. (Turns out, we had a world renowned one closer to home too!) We continue to see his surgeon for consults and to explore possible options. By age 6, he began regularly seeing an orthodontist. Few know this side of his medical journey as I suppose, limbs are more obvious. Also, we don't focus on his differences so it just is all part of our normal.

Goodness the tears and many questions I've asked of that surgeon. If I could go back to that young, scared mama, I would assure her that yes, he will eat ice cream cones no problem. And yes, he will be a lover of words and expression. And yes, he will even win the first round of his first speech meet the same week he is preparing for a speaking role in his 4th play!

Except maybe I wouldn't take all that wonder and fear from her. That mama needed to learn to trust her God and to see Him work miracle after miracle with her son. Without that wondering, maybe this mama would take too much for granted.

Will didn't win the second round of the speech meet yesterday. But, oh the knowing of his victory over medical complications & his courage he displayed to go alone in front of the judges and audience! We are so proud of him. We are so thankful for this journey- though it is sometimes hard and grueling, the joys are great and the miracles we get to see (or hear as the case may be) are precious. This boy amazes me.

2014 Recap - a bit late

2015-01-19T23:52:00.001-06:00

I kind of most definitely slacked off of blogging during 2014. In fact, I've had a growing mental list of blog posts and have sort of kind of intended to actually write them but then was distracted by books or children or rain or sunshine or really anything that didn't involve opening up a computer.

So this may be the longest post in the history of ever but I wanted a record somewhere (because we all know I will never get around to scrapbooking it) of what we did and experienced in 2014.

I realize 2015 started 20 days ago... I started this post in 2014!!! Hopefully this is not indicative of another slow blogging year to come. I won't tell how many books I've started and completed in 2015 already - it's a significantly higher number than the amount of blog posts I've started and completed. I did just send my final batch of Christmas cards a few days ago so at least blogging isn't the only thing I'm behind in.

I have several posts rattling around in my brain - I really want to describe in more detail our Champions experience and what that meant to our family. I will do that one soon. I also have a few other ideas floating around in my head about parenting kiddos with differences and walking alongside those in your life who are hurting.

In the meantime - feel free to just totally bypass this ridiculously long post and know that I do want to return to blogging more regularly - I just needed to clear these off my brain.

Without further ado...

(Seriously - skip this post and return soon for a shorter, more substantial one. This is really just for my own records. It's my 2015 resolution to get this blog thing printed. Also, it's my NY Resolution to keep my kitchen island clean. I'm doing fairly ok on that one.

You've been warned - this is looooong.)

January

We kicked off January with Will being honored at his school as the Special Kid of the Week! He was honored in a school wide chapel of having the character quality of contentment. We also had a family day in which his great grandmother and grandparents came with us to the school. Far away grandparents and even his friend in Canada with his same diagnosis sent in videos to surprise Will and his class with! Each family member and friend shared an affirmation of Will - something we really love, respect, and admire about him. Then, each kindergartner and his teacher shared something about Will they admire. WOW! This was an emotional day for his mama!

One day after some doctor's appointments, I took the kids to a park in Dallas.

Ellie climbed a flight of stairs independently for the first time!!!

Will was in his class talent show and it was AWESOME! Will chose to perform his talent of "running barefoot and sword fighting." He chose "Eye of the Tiger" for his background music. It was so much fun.

(And as his mom, I see him run all the time but it was fun to see the miracle of Will running on his feet through the eyes of many parents who had never seen him do so without prosthetics. His balance and agility are incredible.)

Martin Luther King, Jr Day was one of my very favorite days of the year.

On a whim, Ellie & I decided to try potty training. Ya'll. She did it. In a day. She had 1 accident and never looked back. She napped trained and went all night too starting that day. It was incredible. I had feared potty training due to her diagnosis but she suddenly was ready and just did it!

I had also started that day feeling guilt because I didn't have any cool plans for our day off from school. I hadn't created any special theme days or activities to study or crafts to create. But then, I sat outside doing my Bible study and reading my book and soaking up the sun as I watched the kids play and realized that what they really need is time to just play. They need to be kids. They need freedom and unstructured time to use their imaginations. They need to play with neighbors of varying ages and learn how to problem solve on their own and how to get along. They need independence from me in their play. This became a defining day really for helping me develop my own parenting philosophy. They spent hours playing with neighbors,

and even exploring a nearby creek in the woods.

Such a beautiful, fun day. Exactly what we needed

(This is TX in January - shorts and playing in a creek.)

February

Some of our dear friends moved all the way to CA! We hated saying goodbye but tried to be intentional about spending time together before they left. Our "More Ellie" really misses her "Other Ellie."

Then...

Will was chosen to represent Texas as the Children's Miracle Network Hospitals Champion Ambassador!

This was such a huge surprise and honor. It led to one of the most amazing experiences of our lives.

In 2014, Will continued his love of dress up. I love his imagination.

This picture was taken the day before "inlaws on ice." It was 75 degrees and beautiful which explains why I had no coats or socks or warm anything in our car.

And then we had the epic "Inlaws on Ice" adventure in which we travelled 90 miles in ice over the course of 26 hours due to a horrible scary ice storm. We did this while trapped in a minivan without coats, water, or snacks and with my parents (hence, R's nickname for the "adventure.") We have never been so thankful for our friends who offered us beds at their farm and a great fire when we couldn't get all the way home that night.

The next day, we enjoyed freedom from the minivan and sledding!

At the musical "Little Mermaid" - just a few hours before the great interstate ice capade.

So thankful to crash at our friends' farm for the night.

Spring fishing with daddy

Spring Break!

The kids & I road tripped to see our best friends for a few days & we had a blast! We played, we talked, we rested in the way you can when you are with your favorite people... it was such a good break away for us.

In the spring, Will got new zancos (prosthetics.) Unfortunately, these haven't worked out so well and he doesn't wear them.

Fortunately, they led to us getting really creative and trying to figure out an alternative for Will. He doesn't fit the "mold" (in so many ways:)) of the typical amputee. He is actually functional without prosthetics! Prosthetics slow him down and this leads to social issues at his age when speed on the playground counts. They are also hot which meant he generally goes barefoot all summer.

We ended up with an amazing solution thanks to a friend's research, a cobbler in Oregon, & our brilliant, creative prosthesist in Dallas - Will's first pair of custom shoes that fit his feet!

(Pictures to come soon.)

March
The kids ran a local race. This was Ellie's first race to run in. We were so so proud of both kids!

The race ran out of medals for kids but Will graciously shared his with his sister since it was her first race.

This is Will's cursive by last spring! His kindergarten progress was amazing!

Also in March, Ellie got a big girl room! A wonderful family passed their daughter's bedding and chair and bed and lamps down to Ellie after they realized some of their fabrics were the same as I had used in Ellie's nursery bedding and window treatments. I love her big girl room and absolutely love all her "new to us" pieces. We are so thankful for fabulous hand me downs from sweet friends!

April

In April, we went on our first family camping trip with some friends. A major thunderstorm hit during the night resulting in possibly the coldest night of my life. (Note to self - get a sleeping bag!) We ended up loading up cars at 1am to keep our stuff from being drenched and then spent a very cold night in our leaky tents. By 8am, we were headed to Cracker Barrel like a bunch of wet rats! I've never been so glad for a hot shower. Now I just have to convince my husband to try camping again with me. Also, to invest in a tent without a hole. Also, I'm going to check the weather next time before attempting.

By April, Ellie became a jumper! This trampoline has been awesome for wearing out energy and building muscle strength.

On a beautiful April day, the kids hosted a lemonade and popsicle fundraiser. It was a great success!

Easter!

Ellie got pretend makeup this year in her Easter basket. Her daddy, her Cookie, & her Mimi were gracious enough to let her give them makeovers.

We have been working hard at bike riding!

In April, I finally took my first set of bluebonnet pictures ever! This seems to be kind of a tradition for Texas families but somehow I've just never done it.

Until now.

Ellie danced in her dance studio's spring show - love this girl & love her dance class & precious instructor. I'm so proud of her.

(Also, I'm not crafty at all but managed to create these little no sew tutus for her class so they could match in their spring show. Ellie loved it.)

And Will headed to "hand camp" for kids with hand differences. We made lots of friends and had a blast reconnecting with old college friends and West TX friends.

photo credit: Texas Scottish Rite Hospital for Children

Will got an art lesson from this professional artist with hand differences. They drew awesome dragons.

The rock wall ended up being a brutal experience for us. Will got scared and was unable to make it to the top. This meant he was unable to do the zip line. He was crushed and we didn't know any of the other kids watching so he was embarrassed too. It was just an awful, gut wrenching, heart breaking, character building, tough experience. I am confident he will be able to do it someday. It was so hard as his parents to not be able to help him or push him harder or somehow fix this for him. (There's a life lesson in here somewhere.) Victory someday will be so much sweeter for Will on that rock wall.

He did, however, have a great time creating art.

May

In May, we travelled to Virginia for an old friend's wedding. It was beautiful and such a fun weekend of celebrations.

Ellie & I hosted our annual mother/daughter/grandmother tea party in May. I almost didn't do it this year because I felt overwhelmed in May and it seemed like the easiest thing to let go. But Ellie begged so we went for it. I am so so glad I did. The girls really got into it this year. They each brought books to donate to our local Children's Miracle Network Hospital for kids in the hospital and while they played, the moms each made hand scrubs which Ellie and I delivered to the hospital for moms of kids who were hospitalized on Mother's Day.

I decided this year the little girls were old enough for "real" tea cups and used the china tea cups with them (I've collected it from estate sales and borrowed some from family.) Wow. The girls were so so excited to use real tea cups. They were so careful and precious.

We went around the table to share something we love about our mom or daughter and Ellie said that the tea party was her most favorite day of her whole life.

I am so glad we did it.

Ellie was such a helper this year. She made and decorated the cupcakes and helped serve them. Also, I had a fancy tea party dress for her but she really wanted to wear this pink dress up dress so we went for it. I love how much ownership she took in this year's party.

Sweet sweet friends.

Favorite picture of my kids ever. I have a dream of someday meeting a sculptor who can turn this picture into a bronze sculpture for my yard at a discounted price.

In May, Will graduated from Kindergarten!

Also, the city named May 14 "Will Butts Day."

Yep. He got his own day.

Perks for being the Texas Ambassador Champion for Children's Miracle Network Hospitals.

Will & the Mayor

Press Conference. For my 6 year old.

In the spring, Will & Ellie began to beg to have sleepovers together. I love listening to them whisper as they fall asleep. One night, I went to check on them and they were sound asleep holding hands.

My heart melts at the sweetness and purity of their friendship.

I am so grateful they have each other.

By the late spring, Will had become a full blown book addict. I LOVE that he loves reading. One of our favorite activities is to read our novels side by side while Ellie naps.

In 2014, he read:

lots of Geronimo Stilton books

a few Magic Treehouse books (these drive me crazy)

books 1-3 of the Boxcar Children

Harry Potter Book 1

Treasure Island

Stuart Little

Swiss Family Robinson

Jungle Book - twice (he really loved it & laughed a lot)

Three Musketeers (condensed version)

Jackson P. Jones

Hardy Boys books 1-2

Half Upon a Time

Ralph S. Mouse, Runaway Ralph, & Mouse on a Motorcycle series

How to Eat Fried Worms

lots of Encyclopedia Brown books

Tom Sawyer

Huck Finn

half of Call of the Wild (then we realized it was too over his head (& mine))

He also loves Shel Silverstein and has read each of his poetry books cover to cover. I often hear him giggling as he reads those.

I can't tell you how many places I've found him with a book in his hands - he will read for hours. I'm so very thankful.

He says in Heaven he hopes he can fly while reading.

I loved this day on the beach. I was in my chair nearby with my novel. Ellie was napping between us. Happy mama. Happy kids.

In late May, we took a family vacation - our first Disney cruise!

Ellie loved meeting the princesses. I couldn't believe she and I waited 90 minutes to meet princesses but when she told me how very happy she was, I was glad (mostly) that we did it.

One day, Will saw a man on an island who is an amputee. Will asked us if he could go meet him and so we told the little extrovert/future Senator that of course he could. Will introduced himself and we learned that the man is a veteran who lost his legs in Afghanistan. We met his family and his friend who is also an amputee and thanked them for their service. The rest of the trip, whenever Will spotted them he would run to him and high five them. Will called the three of them the "zanco club" since they all had prosthetics. Will loved meeting "real soliders" who also wore zancos and I think they liked seeing how functional & full of life Will is as an amputee.

My little pirates

Exhausted kiddos

Ellie loves to dance with her Daddy. She calls it "marry me Daddy!" Apparently she thinks marriage begins with a dance. Our hearts will be crushed the day she realizes she can't actually marry him but for now - they dance.

While we enjoyed the cruise, it really helped solidify how we want to travel with our kids and what kind of travel we most enjoy as a family and factoring in our various personalities and disabilities.

So - a story about one of the best days for our family in 2014...

For one of the island days, I began researching something to do. I knew the goal was to get to a beach because we love the beach and everyone would be happy.

Typically in this marriage, R does the travel planning. He's good at that and enjoys it. For some bizarre reason, I did the travel planning for this particular day.

I found a sailboat to charter. In college, I took sailing for PE credit so pretty much because I sailed on a little river in a little sunfish 15 years ago, I'm convinced I am a sailor. R gets nervous every time I rent a sailboat at the ocean. He suspects I have no idea what I am doing. He may be correct but don't tell him that.

(For the record, I got an A in that class.)

(For the other record, I can't remember the difference between starboard or port or how to jig. Or anything else really. But I'm cool with winging it. This stresses out my husband.)

So I found a sailboat. R gave me the okay because the sailboat was far cheaper than all the official Disney excursions. Also, the sailboat came with a Captain.

However, there were some factors that had us both a bit uneasy the night before - one of which was that no one knew where we were going to be the following day - not our families, not anyone on the cruise ship, or us for that matter. We ignored that uneasiness, packed a backpack, caught a taxi, & left for the best adventure ever.

Honestly, our kids & my husband will tell anyone hands down that our day sailing with Captain Ocean was one of the most fun things we have ever done.

Captain Ocean (& his first mate Uncle Ray Ray (as the kids called him)) picked us up by dingy and took us to the 1927 sailboat where Ocean was raised. He literally grew up on an antique wooden 37' sailboat sailing around the world. He told the kids stories of pirate chases, hurricanes, sharks, & exotic places. We were all enthralled.

Will learned how to say ahoy to other sail boats via a conch shell

Ocean sailed us to itty bitty islands and deserted beaches. The kids played on quiet beaches, jumped off a tire swing into the ocean, and explored.

We taught Will how to snorkel! He LOVED it and did amazing! The first animal he saw underwater - a sea turtle!! Ocean swam down and spooked it and the turtle surfaced right in front of Will's face. It was majestic and powerful and awesome.

We also "met" a barracuda who hung out by our boat during lunch looking for droppings from the kids.

Will told Ocean and Ray that he wanted to find a coconut - so at one point, Ocean & Will and Ellie boarded the dinghy armed with a machete, a knife, and Will's plastic sword (he said he needed it "just in case.") Together, they headed to a deserted beach and Ocean taught the kids how to locate a good coconut. He then climbed the palm, cut it down, & taught the kids how to drink coconut milk. Just today, 9 months later, Ellie told me all about that moment.

I don't have many pictures from that day because my camera broke but it was truly an incredible experience. We decided that what made it incredible (& therefore helped define the way we want our kids to experience travel) was that it was an adventure - there was some mystery and unknown. Our kids were able to truly explore new places. We literally set them free and they explored - at one point, I was floating in the ocean, Will was snorkeling nearby & Ellie was playing in the sand on the beach and it was all just so peaceful and perfect. It was quiet - there weren't crowds or tourists or anyone telling us what to do or where to be. There weren't people at all on some beaches. There was no entertainment. Don't misunderstand me - we love great shows and enjoy entertainment but I also want my children to be able to entertain themselves and sometimes just be without having any entertainment in their faces. Ellie made a "baby" out of a leaf - Ocean poked holes in it for a face and somehow he managed to keep it from flying off the boat. She played with "Leaf Baby" all day. Will explored and ran down quiet beaches. He played on an old tire swing. He watched fish and searched for underwater treasures. He fought imaginary pirates. They listened to Ocean's stories and took naps on the deck of a sailboat. It was just a perfect experience - except that it ended way too soon. We've already been figuring out our next adventure and dream of perhaps sailing a bit further with Captain Ocean - maybe a week on a sailboat next time?

A few days later, we headed across Florida to join my parents at our beach spot we visit annually. My grandfather sold it in 2014 so this was our final visit. I've been going since I was a baby so it was hard to realize it's not in our family anymore.

Of course, the sand and water might be in our blood so I am sure we will find our way back.)

I love this picture of Will & Ellie with Cookie & Lovie

Our Fam - Beach 2014

I could watch this kid run on a beach for hours. The miracle of him running seems so much bigger to me when I can see his footprints.

I always think of this quote:

"There is no footprint so small that it can not leave it's imprint on the world." - anon

This might be my favorite of the two of them ever.

And of course, my Ellie girl walking on the beach gets me too. When we were pregnant with her, our perinatologist gave us 3 days to escape to the beach. She was not doing well and our doctor knew that taking "Ellie in the Belly" to the beach was on my "list" of things to do with her while I could since we didn't know if she could live. Our dear doctor finally gave his blessing and we flew off as fast as we could (delayed by weather overnight...) Her life is such a miracle and the fact that this year she could walk BAREFOOT on the beach was humbling and amazing. I am so proud of her work, her joyful spirit, her zest for life, her humor, her perseverance, and her grace. She is Eleanor Grace - full of light and grace. I love watching her walk this sand every year. My faith is so bolstered watching my miracles.

Swimming with Cookie. Ellie grew gills to match her brother's this year. My babies just love the water.

She is also content to dig for hours - like her brother. Give these two some shovels, buckets, and plastic animals and they stay busy.

Snorkeling for sand dollars with Lovie

This must have been a good book

Love walking with her on the beach

Will & I had our own tennis tournament. He won.

Bike riding is really really hard for Will - understandably. But at the beach he can do it so well because it is so flat! We had fun riding bikes to dinner!

Ellie practiced riding her tryke (another one of those skills some thought she would never do.)

A nap on the beach

I taught Will how to body board. It did not always end well but he learned.

Both kids loved crab hunting this year! It was really fun to do this after dinner.

July

Ellie learned to slip n slide! What is it about these things that can be so entertaining for so many hours?

Fourth of July at the lake!

My kiddos love the water and I am so grateful! Ellie's swimming really took off this summer. I love that I can now sit on the side of the pool - she can independently swim and doesn't need me right there with her!

August

Will attended Pine Cove Day camp this year. It was an incredible experience. Unfortunately, my computer deleted almost every picture I took from July - October so I have very few pics of camp. Our best friends came and stayed with us all week while the boys went to camp. They had a great time, grew in their faith, made friends, learned new skills, and grew up way too fast that week! The mommies & daughters had a great time too!

I emailed with the camp director months before camp to make sure the camp could handle my boy with his prosthetics. I wanted to make sure they would let him try anything he was comfortable with and not place limits on him. I also wanted to make sure we were on the same page as far as handling curious kids. Wow. The director emailed me and told me he had been praying for my Will since before he was born after receiving an email about him from someone. Later, Will & I went to the camp to meet with the directors and again I was at such a peace that they would embrace my child and his differences and that they absolutely wanted him to have the full camp experience. By the time camp came, I was pretty nervous. Having my best friend with me helped calm my heart and knowing that Will had a friend eased my anxiety as well. The counselors quickly surrounded our boys, made them feel welcome and wanted, and whisked them away for a blast. They came home each afternoon completely tired but happy. It was such a good experience for growing Will's faith and confidence. It was probably good for his mom too.

This is Will and his counselor. During the closing ceremonies, the counselors speak truth over each child and affirm character qualities they have noticed that week. I loved this.

August meant lots of lake days for boating and tubing and fishing

Look at these fish!

We had an unseasonably cool summer so the kids spent almost every day outside all day - it was glorious.

We made it to a baseball game!

I'm so glad my kiddos are having childhoods filled with playing outside with neighborhood kiddos. One day, another mom and I filled our cars with neighbors and hit the pool together for a picnic lunch and swimming.

August around here is BIRTHDAY PARTY SEASON! (Also it means school is coming soon but that depresses me so I put lots of my energy into BIRTHDAYS!!)

Ellie fell in love with Dorothy and the Wizard of Oz this year so she requested a WoO party. Oh, this was a fun fun birthday party.

Every year I say their parties are my favorite ever but this one really was.

I surprised my little Dorothy with a Glenda costume... for me!

(Yes. Yes I did.)

Her Honey surprised her with a box of costumes for her friends to play dress up with.

We had so much fun decorating Oz - I went with the Over the Rainbow song (which I've sung to her since birth) and did lots of rainbows and whimsical decor. Someday I'll maybe do a post on their parties.)

Ellie and her friend (a munchkin)

Ellie & I made her birthday cake as rainbow cakes in mason jars - so fun & so easy & makes a fun impression.

I definitely need to do an Oz party post. We had so much fun with the decor and the food and the activities and crafts and the dress up clothes for all the girls!! I so love a theme and Ellie was into helping this year which made it even more fun.

Another day....

Moving on -

Will started 1st grade in August!!

How is this even possible?

I dreaded him going to school til 3pm almost every day!! (thankfully, he gets out early on Fridays.) I really like having my people home with me. I like not being on a school schedule or running pick up in the middle of the afternoon. I like everyone to get their naps in. It's January and we are still struggling to adjust to no naps for Will (he does rest on weekends) and short naps for Ellie. In fact, Will told me yesterday that he thinks he maybe still needs a nap time!

But - other than that, first grade has been awesome!

Then, it was time for Will's birthday! For the first time, I didn't host a kid bday party at home.... we headed to the lake! He wanted a tubing/fishing/lego party.

We sent invitations on legos (kids had to assemble the legos to read the invite.)

I got very nervous when a big storm was supposed to hit the morning of the party and began researching plan B. Thankfully, a friend from Children's Miracle Network Hospitals who is also a local CBS meterologist hooked me up with an early morning text of weather predictions for our party spot and gave me the go ahead for a lake party. Whew! So thankful for that connection and the weather turned out perfect.

He had a blast with his little group of buddies. In fact, the boys were having so much fun that we texted parents to extend the party time and many stayed several extra hours. It was a really fun day & so fun watching these little boys play hard together.

The boys fished and played legos and had nerf wars and really had such a good time. And I loved how easy it was to do a party at the lake.

Will got a bb gun for his birthday and has had fun learning to shoot cans with his dad.

September

And then my Ellie girl started school for the FIRST time.

Also, when did this happen?!?

She is in preschool and she loves it.

She's with her two best friends.

Also in September, Will participated in a local "Learn to Golf" program sponsored by Texas Scottish Rite Hospital for Children. He received the invitation and was so excited to give golf a try. I was so excited to be able to meet other local families who go to TSRHC and to work with professionals who knew how to teach golf to differently abled kids. We had been at a golf event once where the pro had no idea how to teach my child with limb differences and that was very discouraging to Will and me. This however, was empowering and amazing! He learned a lot of basic skills and had so much fun. Plus, every kid was given a golf bag and set of clubs! (Technically, Will doesn't have his yet because they didn't have any to give away that worked for him but they've told us if we can go see the pro someday in the metroplex he will make Will a set.) Most importantly, Will made a new friend there and has already had him over to play. While I am so glad my kids are mainstreamed, I do like that they also have a friend with differences who can relate to them on that level.

Moving on...

October

I am certain there were more pics but again the computer deleted them.

Thankfully, I have one from Halloween.

This may come as a big surprise but Ellie went as...

Elsa!

(Along with every other girl in America.)

Will created his costume based out of our dress up clothes. I am still unclear as to exactly what he was but some sort of knight/ninja/superhero? He was happy. So I was happy. Their costumes cost me $0. From now on we are shopping out of the dress up bins!

November

Finally it was time for the Children's Miracle Network Hospitals Champions trip!!!

Will's school partnered with CMNH, Dairy Queen, and CBS to do an incredible send off pep rally. His precious principal wrote a script that I will save forever. She dressed up as a cowgirl and led the kids in a cheer and precious story about Will.

The cheerleaders, drum corp, & drill team all performed. About 75 friends and family came to cheer on Will and my heart just overflowed at the love and support our family has been given as we travel this unique road.

I'm working on a post about the trip so am only going to hit a few key moments but suffice it to say, it was AMAZING. It was over the top incredible and I can't wait to finally sit down and share more.

Will wore his obnoxious "big Tex" hat all over Washington DC.

We had fun exploring Capitol Hill

The champion ambassadors from each state.... oh these kiddos and their families. They touched our hearts and quickly became precious friends. I am so grateful to know each of them. Words can not describe the feelings of finally being able to connect with so many others who are parenting kiddos with unique challenges. There is some serious courage and perseverance and stories worth celebrating in this picture

Representative Louie Gohmert gave our family an incredible experience on Capitol Hill. He was an amazing host and really blessed us.

Will and his buddy Nate from FL

Will & Luke from KY

This was one of my favorite moments- Will playing tag with Miss America!

(Besides hanging out with Kira, he met Michelle Obama, Lady Antebellum, Nick Cannon, Marie Osmond, and more.)

photo credit Kirstin Roper

Will and his dad on live tv with Miss America

photo credit Miranda Barnard

More coming - I have lots of thoughts and words to share about the celebration of this miracle trip.

We spent Thanksgiving with Honey & G-Dad....

Will learned to play dominos with Honey

We loved getting to visit with Great Grandmother

Ellie got to be a flower girl for the first time! She loved it and did very well except for loudly whispering during the prayer, "how many more minutes until it is over?"

December!!

Mimi treated us girls to the Nutcracker Ballet! Ellie loved it. I was surprised at how into it she got but she really enjoyed the dancing and the story - even without any words.

Will was asked to light the city's Christmas tree and ride in the local Christmas parade!

He and Ellie had so much fun riding on their sleigh! They both got really into waving at people - Will pretty much waved both arms (like a flapping bird) the entire parade route!

The great perk for me was that I didn't have to take the kids to a mall to wait in line to see Santa - he and Mrs. Claus were on stage with us for the tree lighting so we got awesome pictures! Plus, Will sat in Santa's lap for the entire ceremony!

photo credit Sheri Harden's friend

Ellie started out very scared of Santa but warmed up to him eventually and then decided she really likes talking to him.

Our Fam - Christmas 2014

Christmas morning - stockings!

a sunny Christmas day - perfect for walking her new puppy

(When Ellie first opened this puppy, she asked if it could be her pretend "service dog" to help her)

Ellie, her Lovie & her Mimi

Christmas night tradition with the R's

Christmas round 2 with Honey & G-Dad!

2014 was an amazing year! We are excited to see what 2015 has in store!

Bacon Beats Eggs (I wrote a guest post!)

2014-12-03T11:42:00.000-06:00

Ellie got to be the bacon! Read more of my recent guest post:
http://blog.kitonline.org/2014/12/02/including-my-kids/

Thanks, Elise, at KITonline.org for reaching out to me and inviting me to guest post. They provide great resources and training for promoting inclusion. Glad to be included today in their endeavors.
Enjoy:)

Thankful

2014-11-26T23:21:00.001-06:00

This year we have so very much to be thankful for...

I'm thankful especially for our recent once in a lifetime (many lifetimes) trip - (I'm working on assembling my thoughts and emotions and pictures to blog about it.)

I'm thankful for new friendships all over the USA and for powerful, precious connections

I'm thankful for grandparents and greats.

I'm thankful for good friends that feel like family and for time well spent this year with them.

I'm thankful for our health.

I'm thankful for good, wise doctors.

I'm thankful for proactive decisions.

I'm thankful for kiddos who have exceeded expectations and goals and who amaze us daily.

I had a health scare this year and am thankful to not be battling that today.

I am thankful for modern medicine and technology.

I am thankful to live in a time and place that celebrates kids with differences.

I am thankful for their schools and teachers and friends.

I am forever thankful to be their mom.

I am thankful for our home and our yard and our neighbors.

I am thankful for our adventures we went on this summer and how it changed us a family.

I am thankful for Jesus and His faithful pursuit of us.

I am thankful for the relationship and friendship I see developing between Will & Ellie.

(look at this precious note I found on her bed last week that Will wrote her!)

I love how we focus on gratitude for Thanksgiving. I want gratitude to be my legacy. I want to be a thankful person year round and to raise thankful children.

May your day be filled with gratitude and be surrounded by those you love.

Happy Thanksgiving 2014

(The kids insisted that this is how "Indians & Pilgrims" would have posed for pictures. I didn't try arguing or pointing out that there were no cameras at Plymouth Rock.)

Not Our Usual Monday...

2014-11-10T22:33:00.002-06:00

Today was not the usual Monday at all!!
Today included meeting the First Lady, meeting and petting the First Dogs (there's 2!) (did everyone know this but me??), meetin Miss America, attending a DVD premier, attending a cartoon premier, spending an amazing afternoon with our US Representative (Louie Gohmert), touring Capitol Hill and learning some awesome history, going on an adventure in he car of our congressman who drove us to our hotel, and meeting Josh Sundquist! Some of us also saw Dorothy's red slippers!
We were gone from our hotel by 9am and returned around 9 pm! We are exhausted! But so happy and humbled.
Will is making some great friends and loving this experience.
I'm having a hard time posting clear pictures here but I joined this little thing called "FaceBook" this week from the hotel (because I learned we needed to be doing some social media networking:) I'm a little behind the times, it seems.) Great fun pictures on Facebook- follow this link:
https://www.facebook.com/permalink.php?story_fbid=361954690634899&id=100004611137542

I can't wait to find time and a computer and really share what this experience has meant for us and some of the things Will has expressed- it's been powerful.
For now- off to bed! Big day tomorrow!

Will's CMNH TX Champion Send Off Celebration

2014-11-07T14:11:00.001-06:00

And We Are Off!!!!

This morning, Will's school along with our local CMNH, Dairy Queen (a corporate sponsor of CMNH,) & CBS threw an AMAZING send off celebration for Will as the Texas Champion ambassador!

I apologize for video shakiness- I cried nearly the whole time!!

His principal wrote the story (that's her in the cowboy hat) and together with our local CMNH director, Robin, created an incredibly humbling, overwhelming "pep rally."

They brought in the cheerleaders, the drum corp, and even the giant DQ blizzard!

We had lots of friends and family show up to surprise Will- when he saw his best friends there his whole face lit up!

Will loved "Dr Paws & Hoopty" from VBS last summer and asked them to attend. But he was very surprised when they came in character and partied in character the whole time- fake British accents and silly dancing! They were amazing!

His giant Texas cowboy hat- which he will wear with pride!

His best friend surprised him!

So did his tennis coach!

Neighbors and sweet friends

Crazy Dr Paws & Hoopty

Nurses from the CMNH funded special needs clinic

CBS anchorwoman Dana graciously emceed

Ya'll.

(I couldn't help myself there.)

Will is loved and celebrated and I can't tell you how good it is for my heart to be representing this organization that celebrates all kids!

Goodness I wish I could sometimes go back 7 years ago and tell that new scared mommy that it is going to be so so good.

Hope to blog from DC and Orlando this week!

We are Outta Here!!!!

(PS- I read from past champions' moms that sometimes it's depressing to come home after ge trip and not have a daily party or people clap everyone you enter the room. :) will & Ellie are going to love this!)

PPS- will loves reading about the champions in the book they mailed him. Each child has their story and picture in it. Last night, he was reading and I went in when he got to TX in case he had any questions. He knows he has differences of course and we've had plenty of talks and doctors and it's not a secret (obvs) but my heart didn't know how it might be for him to read about his story instead of just casual conversation.

Well.

He read it and quietly closed the book and looked down shaking his head with his eyes closed. I braced myself.

My tears were near the edge.

He shook his head and said "doctors,doctors, doctors."

Then he hopped out of bed and said, "time me, mom" and took off running around the house.

He came back 45 sec later and said he proved those who never believed he would jump or run wrong.

(The last line in his story says "despite doctors not knowing if will could run or jump, he continues to defy the odds!)

I asked how he felt about the rest of the story and he said matter of factly, "yep- they got my differences right."

He was totally happy and proud he could defy odds.

PPPS- I have got to pack my carryon and load the car!

It's Almost Time!!!

2014-11-06T17:43:00.000-06:00

So we have had a wild and crazy week!
I coordinated the Veteran's Day program for Will's school. It went great and was such an honor to have a role in serving our veterans and school and community. It was a big job and I am so thankful for an amazing committee and development office who helped me figure this out!

The kids thankfully entertained themselves with books in the school office while Mommy worked this week on Veterans' Day!

A few hours after the school program, Will was in a play at the community theater! He had the title role in "The Adventures of Captain Potato!" I used my sewing machine and attempted to use my poor sewing skills to sew a couple of burlap potato costumes. Then I stuffed them.
I think this Captain Potato is cute enough to eat!

Will did great- I'm so proud of his ability to memorize lines and get in front of an audience. He really loves acting!

Captain Potato and his side kick, Spud.

Finally- we are leaving TOMORROW for Will's big Children's Miracle Network Hospital's Champion Ambassador Tour!!

I am packing like a madwoman for two vastly different climates- DC (where "Arctic chill" is predicted!) And Orlando!

We get to meet the First Lady, our Congressmen, Lady Antebellum, & Josh Sundquist!

The fun starts early tomorrow with a huge send off celebration. I am so excited and humbled! More to come!!! (Now I have got to pack!!)

And We're Back!

2014-10-29T23:06:00.002-05:00

A Letter to Myself - 7 Years Ago-

Dear Me,

I see you - hunched over your computer in the middle of the night in the dark corner of the house. I see you googling and "researching" and reaching out. I see you desperate for anyone who has walked this road before to come alongside you and reassure you that you will survive. I see your tears and your smiles and your fears as you place your heart - your child - out there for the world to see.

7 years ago, you began to write this blog in large part because you don't scrapbook and this seemed like a happy medium to record your family's history without having to scrapbook it all.

(Seriously -it's time to print this out. Then you can call the printed out version a "scrapbook.")

6.5 years ago, you learned your child would be born with limb differences and the blog suddenly became a community. It became your therapist - for free. It became your place of processing and venting and a safe place because you could get all those feelings out and never even hit publish if it was too raw. It became a way to guard your heart and emotions - you could type out here the latest doctor update or prognosis and then family and friends could see it without you having to go through the emotional roller coaster of repeating the news over and over and over again. Later, it would become your cheat sheet - your way to share photos and stories with family in one easy format. It's like letter writing without the whole letter writing part.

You needed the readers - those who emailed you or called you or commented. You found you have great joy from walking alongside other moms figuring out how to navigate this world of parenting kids with differences. What an honor to have prayed for so many babies around this nation and to have talked to and cried with their mommies.

You grew greatly from those who challenged you in the comments and made you stand firm in convictions or possibly rethink your position. You needed the affirmation from those who assured you it would be ok. And you craved the companionship from other mamas. How in the world did moms for thousands of years who found themselves in unique parenting situations of kids with differences survive the loneliness? How grateful I am to have had this community - the internet has allowed me to know mamas parenting kids like mine all over the world.

For most of the last 7 years, you needed this blog. You needed the outlet to process all the feelings. You needed the format to share news or ask for prayers without being on the phone or crowding people's email inboxes. You needed the community.

Oh dear one,

can I share this with you?

I don't think you need this blog quite the same way anymore.

You know that big fear you had from the very beginning - right about the time your baby was diagnosed? The one about what your new "normal" would look like?

Let me tell you - your life looks a lot like any other mama's parenting 2 kids. You drive a lot. They go to school and your son, the one missing his fingers, writes the most beautiful cursive. He reads books on a fifth grade level. He devours books, really. He still cuddles you in the same position he has for 7 years every single morning. He plays tennis. He plays it well. He has friends. Wonderful, compassionate, loving, sensitive, funny, typical little boy friends. He asks great questions. He's the lead role in a play this fall. He plays pretend and wears capes and carries a sword or nerf gun at all times. He doesn't care or know that you took the epidural. (Quit beating yourself up over that, already. Good grief. It doesn't lessen the birth experience and you know what people remember of your birth experience of a child with significant limb differences? They remember the joy and laughter coming from your room. Thanks be to Jesus and the anesthesiologist who brought you the epidural. You know what else? They don't give mommies epidurals to numb the heart and mind when you hand over your child for surgery and you've done that 9 times so far - totally "natural" & no breathing plans or epidurals. So there.)

(Note to children's hospitals - mommies need "silly juice" too to get through surgery hand off.)

Oh that boy of yours, mostly his life is pretty "normal." Sure, he takes a daily shot and he sees lots of specialists and he has to be really resourceful and creative to figure things out but somehow, that doesn't seem as scary or significant to you as it once did. In fact, it feels normal and right and good.

Here's a little fun glimpse into your future - that boy of yours will one day start giving you insight into the man he is becoming and watch out! Those moments - they are holy moments. God is doing something big with him and wow - I don't want to spoil it for you yet but you are going to have some powerful glimpses of the man he is becoming.

And that daughter? The one you were told was probably going to die? The one who shouldn't have survived the pregnancy much less be 4? The one you so desperately depended on the blog community because you couldn't talk to one more person and share your heart quite like you could on here?

She's just lovely. She's graceful and hilarious. She dances and twirls and sings loudly. She's a little mommy - strangers even notice her nurturing spirit all the time. The girl nurtures her babies and has been known to mother leaves and sticks and animals when no babies are around. Her heart is amazing.

She is very sensitive and compassionate. She laughs loudly and cuddles nightly. She's your shadow and though she is your daughter, I have great hope she will become your best friend. She's a joy to be around and fun and interesting. This is good because you will spend a great many hours together every day.

Your need for this blog will change. The emotions still come sometimes and you certainly have hard things but often those are more like hard hours instead of whole entire "pit days." The hard things too are changing - they are more private. You can't always share those with the world because your children will get to the point where they need hard things to stay between them and their mama. They don't understand the internet (except Amazon - they understand Amazon and Apple from infancy, I'm afraid.) Something in your mama's heart just knows that now you keep quiet. Now, you keep these stories and heartaches to yourself. Maybe someday you will share them and maybe you won't but you won't need the same sort of processing format like you once did.

Let me tell you this, Me from 7 years ago -

it gets better and easier and it's good. It is so so good. Your life is far from "normal" but it is better than you ever would have imagined. Hang in there. You are doing great.

-The Older Me

(So many of you have been so faithful to call/text/email and to check on us. I never ever ever anticipated taking such a long blog break! We went on vacation (more to come on our adventure) and then we came home and I meant to blog but it was summer and there was swimming to be done and naps to take with my boy who I knew was close to dropping his nap and there was grass to lay on and books to read - so many books. I started playing more tennis after the kids were in bed and my husband and I FINALLY found a tv show we actually liked to watch together. And I read and read and read. Really, I went weeks without even looking at an actual computer. Blogging just kind of took a back seat - or perhaps got lost in the trunk of my car where frankly, anything can get lost. A few days ago, I found a missing quart of Almond milk in the trunk of my car. Sadly, I never noticed the smell... just found it while looking in the trunk.
But I've missed writing here. I've missed processing although I'm still trying to figure out how to do that as my kids get older and our hard things are a little more private and personal - or at least I'm not sure it's something they would want to read online when they are older. So I may be more cautious going forward in that.
I still haven't figured out the timing of when to actually open the computer and blog. When do you bloggers out there find the time? For the record, we aren't morning people so that's out. With a 7 year old now in full time school, my long quiet afternoons of everyone napping are over. I haven't quite figured out when to be on the computer.
I've missed sharing our stories and posting stories. I always do that thinking of those moms who may be just beginning on this road of parenting a child with differences - it is my sincere hope and prayer that you may see our pictures or read our stories and that you will be filled with hope. I pray that seeing my child swim or run or go to school will reassure you with what I so desperately needed to know back when we first got diagnoses in 2007 - this will be good. You will have a good, joyful life. Your new normal will be great. You will laugh and smile and your kids will amaze you and drive you crazy and change you and grow you and complete you.

So I'm back. I may be slow to return but I'm here. I'm figuring out what blogging will look like for me and how I can best tell our story. We are well. Thank you to those of you who have reached out - even from as far away as Israel this week!! Coming soon - a summer recap, a fall recap (how did I get this far behind?!?), that moment when I glimpsed the sort of man my boy is becoming, a first pair of custom shoes!!!, and more!

Thank you for reading again -
I so appreciate you and the soft place you have given me to land-
Love, K

Happy Will Butts Day! Also - meet the CMN Texas Ambassador!

2014-05-14T16:58:00.000-05:00

I have waited so long to finally blog about this and am so excited to share some big news...

Will has been announced as the official Texas Ambassador Champion for Children's Miracle Network Hospitals!!!

It's huge! It's surreal & exciting & so very humbling... & a bit overwhelming!

We were shocked when the announcement was made in January. We didn't even know such a program existed. Will was nominated without our knowledge and even our family photographer (& dear friend, Olivia) kept it a secret when she submitted photos of Will. My mom kept it a secret when she filled in gaps on the form & submitted an essay... and the local CMN director kept it a secret that he was nominated!

In the 27 years our area has been a part of Children's Miracle Network Hospitals, Will is the FIRST kiddo ever chosen from this area!

So what is a Children's Miracle Network Hospital Champion Ambassador?

He's a spokesperson. He is chosen for "displaying courage in the face of unique medical circumstances."

When I read that I just sat and cried. Courage & Joshua 1:9 have been our theme for the last year as Will has faced some hard things. To honor him for showing courage just blew me away.

He has no idea how brave he is daily.

Will will have opportunities to tell others about the work CMN Hospitals do every day across our country.

(Did you know 62 children A MINUTE access a CMN service?)

He will get to hopefully visit some CMN Hospitals across Texas to encourage other kiddos and families and doctors.

Today, I was asked in a press conference what my hope would be for people meeting Will in this role.

I answered that Will breaks barriers every day. When people put up walls and try to stigimitize people with limb differences or disabilities, Will climbs over the walls or runs around them or tunnels under them to make a friend.

My hope is that in this role, he would have a bigger platform to continue breaking down barriers. I hope it will enable people to see him as just a typical kiddo and that in seeing him as a kid - instead of a diagnosis- they would tear down their own barriers they may have erected about people with differences. I hope people's eyes will be opened to seeing that there is great quality of life and celebration to living a life with differences. I hope people will see a kid who loves life and who can do all kinds of typical kid things and a family who loves their kid. I hope they will see beyond differences to see that we are a lot more alike than we are different.

When that same question was posed to Will, he said he would be able to "encourage kids who struggle."

Today, at a press conference (I know - that seems funny in relation to a 6 year old!), the Mayor declared it officially "Will Butts Day!"

Will asked me if he could do anything he wanted on his "holiday." I told him no.

I told him I didn't know anyone else with their own day and then he reminded me that Jesus has a day too - Christmas!

That gave me a good laugh.

Will's teacher, his school nurse, & the assistant principal all came to show him love and support and celebrate Will at the press conference.

Wow - it meant so much to me. In just 9 months I have come to LOVE the people that pour into kids every day at his school.

Ready for the press conference to begin. (Will & Ellie did ok throughout - they appeared a little bored at times but thankfully managed to stay quiet and in their chairs.)

Cookie & Lovie & Mimi all came!

Will & Mrs. Harden - his kindergarten teacher

Will & Rachel & Molly - nurses at the local Special Needs Clinic (completely funded by CMN and one of the few existing in the country! They serve over 500 kids (& their moms and dads!)

Will gave several tv interviews and did some radio recordings.

(If you are local, he'll be on the news tonight! If you live elsewhere in TX, CBS will be doing some sort of state wide story at some point in the future I think.)

Sweet friends from school came to support Will!

All of the neighbor kiddos he plays with daily came too!

Guess what else a CMN Hospitals Champion Ambassador gets to do?!?!?!

Travel to Washington DC in the fall and meet his Congressman, hang a wreath on the Tomb of the Unknown Soldier, participate in various activities around the Capitol, &

MEET THE PRESIDENT OF THE UNITED STATES!!!!!

I am so excited I can hardly stand it!

(As a former US History teacher I'm already drilling Will on Presidents, US history facts, & pets owned by each President. Did you know there have been hippos, lions, bears, tigers, & alligators in the White House!?!)

Will is really hoping he can meet Bo - the First Dog.

I however, am so humbled that my barrier breaking boy will have an opportunity to shake hands and visit with the first African American President - a man who broke a huge barrier.

The significance is not lost on me.

Someday, I think that will matter to Will too.

As if that's not enough for the WOW...

after hanging out in Washington and getting to know kids from each state (plus one from Puerto Rico & one from DC,)

we will fly on a chartered jet all together to DISNEY WORLD!!!

Apparently I need to subscribe to People magazine to catch up on pop culture because from what I'm told, there will be celebrities there CELEBRATING these champion kids are various ceremonies at Disney World!!!

(So to recap - in preparation, we are studying US History facts & People magazine.)

Does it get any more magical than this?!?!

I am so so so excited for Will to have these opportunities and can't wait to share more with you as we learn more about what being a TX Ambassador Champion means.

In the meantime - want to melt your heart?

Check out these two brief highlight videos for the 2012 & 2013 champions:

I cry every time I watch these videos - I can't wait to be a part of something that celebrates kids who show courage in the face of unique medical circumstances and an organization that fights to save lives and better lives and normalize lives for kiddos every single day.

Spring 2014 (Recap)

2014-05-08T22:25:00.002-05:00

Summer is thankfully only a short and sweet 5 days away for this family. As I helped Will get ready for school this morning (still way too early!) we daydreamed together about al the things we can't wait to do in the summer:

swimming! sleeping! Reading! cartoons! And according to Will - sleeping in for 50 hours!

(Amen!)

(I have loved his school and his teacher but I am definitely a summer mom & am so ready to have him back home with me! My countdown may be more about me than him!)

So with summer rapidly approaching, here's a recap of our spring.

It's been fun & busy and wonderful (mostly.)

So with no further ado...

I present the longest post ever.

For Spring Break, the kids & I road tripped to see some of our best friends on the planet in Central TX.

Pretty much it was perfect -

Will & Mason are the same age as are their little sisters.

The kids were instant best friends

as were the girls

Both Hailey & Ellie spend most of their time being mommies...

More to come on Will's reading but he & Mason enjoyed some good books together

Sweet friends having a slumber party (this didn't last all night)

(neither did this)

Ellie plays doctor all the time. She loves to give check ups.

Not bad for two dislocated shoulders!

The crazy Waco gorilla - we took a walk one evening to show this to my kids.

Make up time

Mason introduced Will to the joy of creating things from paper. The boys made paper ipads and even paper plugs for their ipads and then they spent hours playing pretend paper ipads.

This makes my heart smile.

Since returning home, Will has continued to make paper objects of all kinds.

Being with the T Family felt like home to me. This may be because I spent more meals and hours hanging out in their home while R was in grad school than I spent in my own home I think!

Will was in his second play, "The Dragon of Krakow."

He played "elder #1." He informed me he needed a beard, a cane, & glasses for his costume. When I asked him why, he told me he was an "elder" and that means he is supposed to look old!

Of course!

His sweet teacher came to his performance.

The elder with his grandparents

Ellie is getting more and more into dress up too.

Dorothy is one of her favorites

We saw another musical in Dallas this spring with Cookie & Lovie - Wizard of Oz!

It was fantastic and we all loved it!

One Friday, Will went with his class to a local field where they met their 8th grade buddies for a kite day & picnic.

He had a blast!

The little sisters had fun watching the kites

For Christmas I really wanted a wooden swing...

& I got it!

It's one of my favorite gifts ever as there's almost always a kid out swinging now in my front yard - sometimes it's even my own kid.

I've caught neighbor kiddos quietly swinging or loudly singing to themselves and it just makes my heart so happy to look out and see someone swinging. Already, the grass has been worn out beneath it and I just love that. Kids belong on swings.

I confess that I often go out late at night and swing under the stars. It totally relaxes me and makes me feel small to stare at the stars from my swing.

We've enjoyed some recent long walks in our neighborhood and Will has been working hard on mastering bike riding - he's doing great!

Ellie does great too walking and went over 2 miles one day!

Ellie had her little dance class spring show off. I channeled my creative side (had to dig deep) and made all the girls matching tutus.

Ellie and her favorite dance teacher, Mrs. Jeanne

She got to dance with her daddy at the spring show! It was precious

After the dance show, Ellie and I headed to the make up store as I needed a few things...

I turned around and discovered that she had found the lipstick.

She doesn't do subtle.

Being a mommy can wear a girl out - Ellie pretend co sleeping with all her babies.

Will has started tennis again and loves it. He practices in the yard almost daily and always enjoys his lesson.

I joined a tennis team and league this spring too & have LOVED learning the sport and playing so much. It's the only time where I truly just turn off my brain to every thing except playing tennis. I can't think of errands or grocery lists or make phone calls or check email or worry about anyone. I get to be outside for a few hours, laugh with friends, exercise, and think of nothing except the sport and the game.

It's amazingly refreshing.

I lost my first match but won my second and it is just a blast.

(Especially winning. That was more fun.)

(Will made me a pipecleaner ball for good luck which I wore attached to my shoe for my second match. I think that was what did it. He has since begun making them for our whole team.)

A few days after hand camp (that gets its own post soon), Honey & G-Dad came to town to take care of the kids & we headed to VA for a very special wedding.

In between wedding events, we managed to explore Richmond, VA with friends.

I love history & Richmond has it in abundance.

Carolyn & I rocked on the groom's 200 year old porch.

The church where Patrick Henry gave his famous "Give me liberty or give me death" speech. The grave markers here were fascinating.

With dear friends at the wedding

I've known Michael since before he was born - he's like a little brother to me & I loved being there to see him get married!

The dad of the groom & R

Will & I

My groom & I

The weekend's groom & I

Whew!

And that is it (almost) for Spring 2014 in a nutshell.

Summer Here We Come!

Ellie Runs a Race!!!

2014-05-06T00:18:00.003-05:00

Earlier this spring, Ellie finally accomplished a big milestone that we had been working on for over a year...

ELLIE CAN STAND UP BY HERSELF!!!!

This may seem crazy but one of my favorite parts about parenting kiddos with differences (& I have a lot of favorite parts :)) is how we don't take much for granted. We have high expectations for our kiddos - but we also know that our kids have to work so hard and often endure surgeries or therapies or medical devices (or all of the above) to accomplish what seems like a minor goal for most people.

Not being able to stand up by herself has really been a challenge for Ellie (& me.) As she has gained mobility and independence, she has been able to venture farther from Mommy (like at a park or a friend's house or in our yard.)

However, she falls alot and until very recently, that meant me always running to help her get back up because she was unable to do that by herself. I also had to help her in her dance class as sometimes a certain move required getting down to the floor and back up. It's not a big deal and it was just our normal and our habit so not something I really thought about - until I noticed my friends not having to help Ellie's friends back up and realized this was hampering her independence. We've worked really hard in PT (rather, she has with her therapist) & just struggled for over a year since learning to walk to figure out how to get up after a fall.

And then while playing in the yard one afternoon, she suddenly did it!!!

With tears in my eyes, I quickly videoed and sent it to her therapist and her daddy and her grandmothers. I cheered and cried and celebrated.

Then I had her do it again and again and again.

Recently, she had toxic synovitis (sounds worse than it is) in her hip and has kind of regressed as far as standing up. Going back to not being able to get up independently was such a struggle for her after learning how to do it. She has just started within the last week or two to do it again and I'm just so grateful all over again.

I love being able to celebrate "little things" and knowing that really, none of it is little. Life is so much more fun and exciting and sweet when one has to work hard towards their goals and when we get to celebrate together seeing them accomplished.

Shortly after this big accomplishment,

Ellie had another.

For the young doctor who told me when Ellie was 29 days old that "she probably won't ever walk but there's still a chance for quality of life..."

(to which I heartedly (& uncharacteristically as I tend to be more timid) responded that we do NOT determine quality of life based on mobility.

To that guy-

I present,

Ellie - RUNNING her very first RACE!

We really enjoy local community races and have participated in one particular one for years. This year, I was so excited because it would be the first Ellie could potentially do ALL BY HERSELF since learning to walk in December 2012. (She rode in the stroller in 2013 as her arms and legs were casted from surgeries.)

Most of us aren't morning people in this house but Ellie woke up so so excited to do a race!

We loaded the car and raced quickly to find a parking spot.

I had double checked our registration info and online and knew the kids' 50 yard dash was scheduled for 8:00am.

But - as we headed to the start line at 7:50, we heard them announce the kids' finishers!

I double checked my watch. I double checked my phone time. I double checked with several other people near the start and everyone agreed it started (& finished) earlier than expected.

Well.

I am generally always running late and I will accept consequences and responsibility if it was my fault my child missed participating.

However, I was not about to turn around to that precious three year old little girl who has WORKED HER TAIL off in therapies and endured multiple surgeries and WEARS SPLINTS EVERY SINGLE DAY AND NIGHT and tell her she wasn't running in her brand new running shorts she picked out.

I just could not do that.

Some sort of inner mama lion overtook me and I marched right up to the race director.

I informed him the kids' race had started too early according to the information provided to runners. He agreed and admitted he was surprised it had started early and he wasn't really sure who made that decision.

I then asked if he had any remaining medals (my children were pre-registered so I had every reason to believe he should have their medals ready) and told him we would make our kids run the final 50 yards of our run to "earn" their medals. I let him know I was disappointed (as were my kiddos) that they started too early.

Well.

That race director shocked me and told me to follow him.

He headed to the announcers at the start line and made an announcement that there were some "special" runners who were going to run the kids run & he asked people to please come back and cheer.

Now. R & I had mixed feelings about this. I didn't really like him designating my kids as any more special than any other kid racing out there. Also - we didn't want the special attention. This race wasn't about us or anything we are involved in - it's just a community race and we were simply asking them to honor the start times posted (& honor the registrations we had signed up for.) Really, I had hoped he would hand me the medals & let us have the kids run the ending of our run & that would be that. Morever, we would have preferred that he simply opened up the kids' dash for one last dash and invited any child who missed the initial one to compete. This would have been fair as I assume there were other children who missed the start time since it started too early. Plus, this would not have singled out Will & Ellie.

One look at Ellie's determined, hopeful face, however, & I just had to set aside my own insecurities and feelings about being singled out.

When they signaled to start, Ellie just took off.

Will, meanwhile, was feeling very self consious (understandably - there were lots of strangers suddenly filming and taking pictures and it was very awkward) and so he said he wasn't going to race. I told him to stand to the side then while his sister did.

Being rather competitive, he couldn't stand the idea of Ellie racing without him so he took off.

Will is FAST. He quickly blew past Ellie but she was in her own zone and didn't seem to notice.

She held her Daddy's hand for most of the way and she managed to make it the whole way without falling!! Not bad for walking on slick brick streets and for a girl who suffers from lots of falls.

She made it through the finish line all by herself and my heart just swelled.

It wasn't about the race really - just seeing her pride in herself and knowing she has worked so hard and come so far and she is walking by herself. I am so so thankful to have a front row seat!

They actually only had one medal left for the kids' dash (poor planning it seems on several counts) and despite finishing first and having the medal placed on his neck, Ellie's big brother removed his earned medal & graciously handed it to her knowing how much it would mean to her (& he has others at home.)

(Score 2 for parental pride that morning!! His medal gift was unprompted.)

She wore it proudly all day.

The kids then joined R & I for the 5k. They rode part of it in the stroller and than ran/walked the final 1.5 miles!

We were one tired & happy family that rainy Saturday!

First Camping Trip!

2014-04-28T17:49:00.001-05:00

I love camping!

For years and years I have begged my husband to take us camping. He took me before we had kids....

and finally - he said YES!

The second he suggested a weekend camping I got busy preparing.

We planned on going with some friends to a nearby state park. I followed my mom's advice from when we were kids & Ellie & I went on Friday morning to the park to reserve our site.

Apparently, Al Gore invented the internet in the years between when my mom and dad took us as kids camping until my parenting days.

The park ranger informed me that people now reserve their sites via internet. The park had been full for months. My idea to go out on Friday and get ahead of the crowd failed.

Fortunately, the park ranger knew of another park just a few miles away.

Apparently it was a "Jellystone" campground. As in - Yogi Bear and Hey Boo Boo!

I texted R to make sure that was okay with him - it had good sites but had some cheesiness...

he never responded to my texts and therefore learned his lesson about responding to his wife. ;)

We headed out on Saturday and chose our site and pitched our tent.

Ellie and I decorated the tent with pinwheels.

Ellie fell asleep on the way to the campground which was perfect and gave R and Will and I time to set up.

Will was in charge of tent stakes.

He also had to assemble poles.

Ellie enjoyed the hammock.

I learned a lesson too - camping is a lot of work on moms and dads! I had camping memories of reading books, exploring, playing games, and laying in hammocks.

Well. I loved every second (almost) of our little trip but told R I need more time - I felt like I was either setting up, making meals, cleaning up meals, or taking down. There was no reading in a hammock time!

Next time, we're going for more than one night!

(For the record, I texted my mom the next day to tell her how much I now appreciated all the work she and my dad did to make camping fun for kids!)

the "kids" bucket - full of camping themed books and games

(I can't help myself. I do love a theme)

Roasting hot dogs

Feeding turtles

The kids and moms went for a walk to explore the campground... and found a few cheesy Yogis

making "gravel angels"

Will and his friend spent a lot of time "gold mining" in a nearby ditch

s'mores!

A cold front hit on Saturday... and I was so unprepared. (This seems to be a theme for 2014 outings.)

Around 9pm, the adults gathered around the campfire (the kids were sleeping) and we began to watch lightning as a storm moved in. We broke the no screens rule to check the radar & make sure tornadoes weren't headed our way. The dads completely loaded up the cars with everything except tents and children in case we had to make a hasty middle of the night exit.

By 10:30, we were all in our tents and a huge storm hit.

I love sleeping in the rain... if it's a light pitter patter rain.

This was not a light pitter patter rain.

This was bright lightning and booming thunder and downpour along with high winds and temperatures below 40.

The kids slept through it.

The grownups were awake all night & COLD!

(But not complaining - still so glad we had a successful first camping ADVENTURE!)

By 8am, we were loading kids into cars with heaters while we took down our tents in the rain...

& gave up on cooking breakfast on an open fire in the rain.

We went in pjs to Cracker Barrel and had possibly the most delicious breakfast in the history of camping ever.

I may be cleaning muddy camping gear for the next 8 years ...

which is good since R claims he's not taking me for another 8 years.

It was an adventure and actually a lot of fun (cold, windy wet fun.)

Easter!

2014-04-24T23:51:00.003-05:00

Happy Easter!

So - life has kind of just happened this spring & opening up a computer hasn't made it to the top (or middle or bottom apparently) of my priority lists.

We've had some big firsts this spring & I can't wait to share them. We've had some great celebrations and some sicknesses and a hip issue that is thankfully starting to resolve itself. We've seen lots of great friends and have been outside as much as possible - even to sleep!

All of that to come... hopefully before summer.

For now, I'll start with the most recent - Easter!

On Good Friday, our dear friends and former neighbors from West Texas came to visit! They arrived just after lunch which left us plenty of time to get out to the lake & enjoy the water and beautiful day!

We rode the boat and their boys caught quite a few fish.

Sweet friends

These two have been good buddies since Will was born. It was so fun to watch them pick right back up even though they haven't seen each other in over a year!

Never in my life have I been so thankful to own so many riding toys.

Daddy caught a fish but since it was on Ellie's rod, she claimed it.

H caught the biggest fish of the night!

They sadly had to leave us Saturday morning and then we headed out to the lake again.

After a day of playing in the sun and sleeping (in the sun for one of us) we dyed eggs

Lovie "ragged" Ellie's hair for church

These two generally play so well together. I love watching their imaginations and friendship.

Not sure what they were doing with their buckets of mud and nets but it kept them busy.

Cookie & his favorite boy and girl in the whole wide world.

(That's what he calls them: "most favorite boy/girl in the whole wide world" and they've been known to call themselves that in his presence. :))

(I was once his most favorite girl... I've been replaced but I'm ok with that.)

I could not possibly love them anymore.

After church walk with Cookie on Easter morning

"Mommy, will you take my picture with my daughter?"

(Also - her "daughter" had a new Easter dress too (that I found on sale and could not resist.)

Hunting for eggs

What Ellie wanted the most for Easter - pretend makeup.

The bunny delivered.

Ellie gave makeovers while Lovie prepared lunch.

This was Daddy's first ever makeover.

His expressions are priceless.

Mimi got one too.

As did Cookie.

And really anyone who visits and sits still very long.

We did the Vintage Resurrection Eggs (as in - circa early 1980s from when I was a child.)

I thought the Ressurection eggs were really special this year because Will is now a Christian and his reading has taken off so he really got into participating.

We did a Passover seder dinner on Maundy Thursday (of which I have no pictures) but Will was very engaged this year. He has memorized the plagues of Egypt and was able to recite and describe each of those. He interjected a few songs that applied perfectly to some of the lessons. It was precious to watch him engage with the ancient traditions and really get it.

Also, now everytime our kids see grape juice, they assume we are doing Passover.

Lovie has a tendency to buy Easter animals. Two years ago she got bunnies. Then last year & this year she got ducklings (which get released at the lake when they are big.)

Ellie is our animal lover and spends a great deal of time holding,kissing, & torturing her duckling (which she calls a "chicken duck.")

It was a beautiful, fun Easter weekend spent relaxing on the water with friends and family, celebrating a Risen Lord in church, and overcome with gratitude for hope in life everlasting.

We've mourned a lot this spring with friends who lost a child and my heart had such a heaviness for our friends on Easter.

I am thankful for a faith which somehow takes heartache and sorrow and offers it hope.

Under the Sea & Ice Storm Adventures!

2014-03-12T11:08:00.001-05:00

Two weekends ago, we loaded up the party van with Cookie & Lovie for a trip to Dallas.

For Christmas, Cookie & Lovie gave us tickets to several Broadway musicals in Dallas & we decided to make a weekend out of the trip.

It was a beautiful Saturday - 81 degrees!! First, we headed to Dallas Blooms at the Arboretum.

It was so warm that the kids "waded" in the children's park.

(This an important fact to note considering what happened the next day.)

Road trip reading

Stopping to smell the hyacinth

playing with grandparents

My sweet loves

After naps in our hotel & a yummy dinner which we walked to a few blocks away, we crashed early.

When we woke up the next morning, it was cold and rainy so we drove two blocks away to visit a lovely church. It was a great church.

The temperatures continued to drop but we didn't worry - ice wasn't supposed to hit until much later in the evening.

After lunch, we headed to see the Little Mermaid Musical!

Ellie was beside herself excited! She talked for weeks and weeks about it and was just beside herself. She planned on wearing her mermaid tail and also packed all of her Ariel jewelry. She was just beside herself excited.

I'm so glad my kiddos love the theater!

Will pretended like he was too cool to like a "girly" show but he was pretty excited too & loved it.

Apparently Cookie had never seen the movie & was unfamiliar with the story!?! How is this even possible?

After the show, we walked outside shocked to see that it was sleeting heavily.

It was decided that we should head home - we were only about 85 miles or so from home... and so we began our adventure.

For the record, Ellie (recently potty trained & with a steel bladder went to the bathroom during church at 9:45am. She did not go to the bathroom again until 10:30pm. Not even kidding.)

Me, with not a steel bladder, needed to go after the show but we decided to hit the road and stop for treats and the bathroom after getting out of the parking lot - this did not happen.

I had on ballet style flats and a thin skirt & light jacket. Ellie had on her "coat" hoodie. No one else had coats. R had a fleece.

We had no water and no snacks.

We had no blankets.

We were stupidly unprepared.

(In my defense - it's TEXAS! And it was 81 degrees the day before!)

Ellie immediately crashed.

It took us 5 hours to go about 45 miles.

At one point, I finally texted a few friends, scared & asking for prayers. Not only were we not moving but it had become dark.

We had finally found an open gas station & R pulled into it to stock up on waters. I bought lunchables for the kids' dinners. It never even occurred to me to buy breakfast!

The ice was falling heavily and the roads rapidly became dangerous. Semi trucks were sliding & often unable to make it over bridges. We saw cars and trucks that slid off road. At one point, we became stuck on a hill that is a bridge. I heard R ask my dad how far back he thought the gas station was. It was estimated a few miles back - I think R was considering possibly having to walk back for more waters, etc - again, totally underprepared clothing wise. No one was making it over the bridge. We sat there for over an hour. At one point, a trucker came to our window and as we began to slide, he calmly guided R into the slide to help us avoid hitting the cars stuck behind us. I was looking over my shoulder in the dark at the guardrail and could see nothing beyond that. It was quite scary but R did awesome and gained traction again. The kids did great (thank goodness for distracting iphones & ipads!) Ellie did get pretty nervous but did okay as long as she could hold my hand.

Eventually, we made it over the hill.

By this time, we were trying to find hotel rooms in the nearest city (still 10 miles away) but they were all full and the lobbies were apparently full of travelers.

By the grace of God, we had friends who had also been in Dallas & had left hours ahead of us but were unable to make it all the way home - they detoured to their farmhouse & invited us.

Finally, we made it to that exit and got off the interstate.

5 hours - 45 miles.

Shortly after exiting, we learned that the interstate was shut down both directions. We were so glad to have made it off.

(So unprepared to spend the night out there!)

Though the country roads headed to the farm were worse than the interstate, there were no semi trucks sliding or stalling and really no traffic and very few bridges so it was a little easier to make better time.

At 10:30, we finally made it to the driveway.... which was a steep hill.

We slid down the hill 3 times before finally gaining traction and momentum to make it up the hill and through the gate. Goodness.

I have never been so thankful for a warm fire, a good bed, dear friends, and a glass of wine!

These two girls were pretty excited to wake up on a snowy day to a slumber party together!

With the roads too bad to leave in the morning, we hung out at the farm all day.

Thankfully, our friends prepared better than me and stopped at a gas station to buy oatmeal and nutrigrain bars on their way to the farm.

We raided the pantry for snacks and lunch.

E tumbled down these stairs - scared me really bad. Was thankful for both a pediatrician & a PT on hand - I keep waiting for her first broken bone. With her awful falls, it is inevitable. She was scared and bruised but fine.

I found nailpolish & gave the girls manicures.

& pedicures

Good friends and a fire.

Around 1pm, R left with our friends who had four wheel drive to head to our town. They took him home and I put kids down for naps.

When he got home for his truck, there were trees blocking our driveway. He sawed and moved tree branches and finally made it back for us around 4:30pm. As we headed back to town, it was very slow going. We finally got home around 6pm! 26 hours after originally leaving Dallas!

Will and Ellie did manage to get some sledding in once we got back to town. When we dropped off Lovie, some friends were sledding in the yard - we borrowed hats and coats from them so the kids could sled before dark. (Again - so unprepared!)

Note to self- pack SOCKS!

My feet were so so cold!

(Me wearing borrowed pants & fleece.)

Wow! What an adventure! So very thankful for R's great driving in really stressful conditions. His knuckles were white! He stayed focused and calm and managed to keep his kids and wife and inlaws safe.

I was very thankful for friends who opened their home to us at 10:30pm when we couldn't make it home and for friends who I know prayed when I sent that text once I began to realize that this was not a good situation.

I am thankful for warm cars and for apple products to keep kids distracted and quiet during stressful driving conditions.

I was thankful for Ellie's steel bladder!

I was thankful for the trucker who helped us when we slid backwards.

(I couldn't help but wonder if he was an angel in disguise?)

I was super thankful for warm socks when I got home!!

We will never forget that time we saw "the Little Mermaid!"

Ellie - 3 1/2

2014-02-27T23:27:00.002-06:00

Last week we had a big half birthday in our house!

On Monday morning, I had every intention of celebrating Ellie's half birthday... until I was up most of the night with her as she was sick, Will woke up with a fever, and I had a stomach bug.

So... I just waited an extra day to tell her she was officially 3.5.

On Tuesday morning she was a very excited girl and has since told everyone she comes in contact with that she is a big 3 1/2 year old.

We celebrated with singing half of the birthday song and cupcakes (of which she only ate half the icing.)

Ellie at 3.5:

eats just about anything although her favorite foods are dips

She loves to drink ice water but also enjoys whole milk (or ice water milk - gross!)

She doesn't love beef but does love fish, chicken, and pork

She told me her favorite vegetables are "peppers" (bell), cucumbers, carrots, and olives.

Her favorite fruits are grapes, apples (no peel please!), pears and pomegranates.

She loves to cook and begs daily to help me make dinner. When she is not helping me cook, she can often be found in her kitchen cooking for her babies.

Playing babies is her favorite activity on planet earth.

She frequently begs to go to the beach - her favorite place on earth.

She loves to read and prefers the same book over and over until I beg for a new book.

She sleeps great all night and still naps a few hours a day.

Ellie talks all day long and sometimes I catch her talking in her sleep. She sings and talks to her babies - constantly reassuring them when she steps away from them, loving on them, kissing and rocking - she is a busy mama.

Bathtime with babies

I don't know how she fits in her bed with all those babies

She and her baby have matching duck towels

Poor Batman - when Will's away he loses all dignity

Her favorite color is pink. (Except this week it is apparently purple.)

She has begun to love playing dress up and prefers to wear her crown all day long.

She does not love having her hair brushed although she does love having her fingers and toes painted (& recently had her first professional manicure as a potty training reward)

Her favorite cartoon is either Tom & Jerry (like her brother) or Dora the Explorer

She says she will be a "mommy" when she grows up. She also says that before she is a mommy with babies, she will "take care of babies" for her job. Her PT recently predicted she will become a neonatologist. I wouldn't be surprised at all - she loves babies and seems to be very curious about doctors and medical processes.

She has been dismissed from OT and only does PT once a month!!!

She can wield a sword in one arm and a baby in the other as she plays with her big brother.

He adores her too and recently colored her some pictures to decorate her kitchen with.

Ellie's best friends: Will but she says her best friends who are girls are Sophie, Other Ellie, & Elin

Some recent Ellieisms:

"I'm going to marry Will because I love him and he's my best friend."

Will countered with some awesome logic: "Ellie, you can't marry me because the law says brothers and sisters can't marry."

I told him it was fine and to let it go and reminded him that he used to want to marry me...

to which he replied,

"Mommy! Sons can marry their moms because we love our moms more than we love our sisters."

You can't argue with that logic.

Also, she recently started saying this nightly,

"Mommy, I love you more!"

I argued, "No, Ellie, I love you more!"

"Mommy! We each love each other more together."

And one of my favorites,

"You are the best dinner making mommy ever!"

Ellie is becoming a daddy's girl - recently I walked in her room and caught her and her Daddy playing family. They were poising for a pretend family picture with a pretend photographer apparently stationed across her room. I cracked up.

Don't they make a cute family?

Ellie received a pink car last fall but finally convinced her Daddy to build it a few weeks ago. We've determined her love language may be quality time - she spent 2 hours focused and working with her daddy to build the car!

Ellie begs Will to play with her after school every day. He usually needs some down time but will often play with her after nap time. She adores him and loves playing with him. I love listening to them play together.

At 3.5, she is also starting to play more with the neighbors (with me supervising nearby.) She daily begs the kids on our street to play "family" and can usually talk them into it (at least the girls.)

My sweet girl - so many things I love about her at this age. She is my little buddy - goes everywhere with me and is so interested in every aspect of being a mommy. Every morning, after she eats breakfast, she tells me she is coming to watch me get ready. My heart about melts as she walks into my bathroom and watches me do my hair and makeup and get dressed. She sits on her little stool with her baby and I adore having a daughter to teach about being a girl.

As girly as she is, she also has been trying to climb trees recently and last week, I caught her playing with a dead dried worm. Nasty!

She gives lots of hugs and kisses and is Will's number one cheerleader. In fact, she often sets up her babies in a line to watch him play - he loves the audience.

I love her nurturing spirit and encouraging heart.

I love watching her think and figure out life. She is naturally curious and asks great questions. She is a thinker and is discerning of people - she often holds back when meeting a stranger.

She has the most hilarious facial expressions and entertains us nightly with the "Ellie Show."

I love 3.5 Ellie!

Leapknot WINNER!!

2014-02-11T22:19:00.001-06:00

UPDATED -

and the winner is - DENISE!

Will you email me at baseballsbutterfliesblessings@gmail.com with your shipping address & I'll get a coffee in the mail to you?

Thanks

-K

Way way way back in like July of 2013, I "interviewed" an old friend, Megan, regarding the release of her husband's first book, It's Just a Couch. I intended to post the interview because - wow- our friend wrote a book! And of course, I planned a giveaway of his new book.

Except, I got distracted/lost/confused/forgetful/almost never turn on computer anymore/forget to blog and never actually posted that interview.

Fast forward to the very first Christmas card in my mailbox; it's from our friends

and the dream she mentioned in her July "interview" had become a reality!

In addition to writing a book,

our dear friends bought an antique coffee roaster and started a coffee roasting business in their backyard!

They believe in good coffee and good conversations over a good cup of coffee and they apparently believe nothing compares to a fresh roasted cup of coffee - so they roast it and deliver it via overnight shipping to your door fresh roasted!

(R and I can attest to their love of coffee as they always came to church coffee cups in hand - probably a necessity as they parent 4 little kids and had to get everyone out the door for church. We parent 2 and it's a battle every Sunday to be on time. So far, we are losing the battle. Perhaps coffee is the answer.)

Travis & Megan have been good friends to us for a long time. Megan will forever be my spica care lifesaver. I can't really pay her back for cleaning diarrhea out of my child's body cast but I can give away a bag of her fresh roasted coffee.

True story - when Ellie was in a spica cast recovering from hip surgery at age 6 months, we had several awful blowouts. An easy diaper change in a spica took about half an hour. A bad one could go as long as 2.5 hours and took 2 people to throughly clean. One afternoon, Ellie had a blowout. My husband couldn't leave work and I couldn't reach Honey (who was busy taking care of Will to give me a break) so I called a neighbor/best friend. Her kids were sick but she calmed my tears and assured me she would have help at my door asap. True to her word, I looked out my window about 10 minutes later as a black suburban pulled up (I was working on Ellie's spica clean out alone and just could not get it by myself - couldn't hold the flashlight and clean at the same time. It was a doozy.) Megan hopped out (having dropped her 4 kids off at a neighbor's) and spent over an hour cleaning diarrhea with me and making me laugh instead of cry. Her servant's heart and willingness to jump into the nasty and help clean a baby she wasn't related to has taught me so much about what it means to be available to serve others.

So thanks, Megan. Thanks for cleaning a spica and for calming me down and for teaching me about servanthood and grace and dignity in life's messes.

Also - thanks for elevating my inferior coffee tastes.

I began drinking coffee the day after I turned 32 in an effort to become a more sophisticated beverage consumer. Rather than begin my mornings with a diet coke, I now start with coffee (with sugar & almond milk of course) and then move to diet coke.

For Christmas, I gave R a "subscription" to LeapKnot - he now gets a surprise bag of coffee once a month delivered and oh my goodness, when I open the front door - I am greeted with a lovely coffee smell. This morning, as I prepared Will for school in the dark (we aren't morning people and keep lights off!), I overheard R whispering to himself about his cup of Leapknot coffee and how good it was.

It's good coffee.

(For what it's worth, so far our favorite is the Mexican Chiapas flavor.)

The website teaches all kinds of coffee brewing tricks - way beyond my sophistication but if you are a coffee connoisseur, it's worth a read.

All I know is that the coffee is good and I'm using less milk and sometimes drinking two cups.

It's good, ya'll.

So, yay for friends who are following a dream and building a small business with integrity and a great product!

Want to win a bag of fresh roasted Leapknot coffee just in time for Valentine's Day?

Or - if you are not yet a coffee convert, you could choose It's Just a Couch.

To win - enter a comment below and tell me what morning beverage you choose to wake up with and face the day/life/kids/spouse/work/laundry piles.

(I'll randomly choose a winner and post it on the blog sometime Thursday morning. If you are the winner, please get me your email address asap after winning so that you can get your coffee by Valentine's!)

(Or let me know if you prefer Travis's book.)

If you don't win - well, go check out their website for great fresh roasted coffee delivered to your door - perfect for the one you love who loves coffee.

(fyi - all pictures used with permission from Leapknot - ie: I texted her and asked permission and she said yes probably because she has seen the state of my kitchen and didn't want a picture of her lovely simple coffee bag next to my piles of random paperwork and items I need to put away)

Ellie is a Big Girl!!

2014-02-10T23:38:00.000-06:00

Ellie has BIG news!

Someone potty trained herself & hasn't had a single accident since the second she started - over 2 weeks ago!

I have been so so blessed in the potty training department.

When I potty trained Will, I had a little break between doctor's appointments and decided to give it a try. I was not quitting diapers completely and did not commit to the potty training thing like all the books recommend. I wasn't about to trash unused diapers in case this thing didn't work out.

Amazingly, he had like 1 accident and was trained in 24 hours.

With Ellie, I have been more concerned about her muscle control (or lack thereof) and have long wondered how that would affect potty training.

We tried briefly last fall for about 6 hours - after a few accidents and not a single readiness sign, I gave up.

I've talked to her therapist and doctor and really, none of use knew how or if or when Ellie would be able to potty train and I think we all agreed it would be a big challenge.

Therefore, not one to jump headfirst into a challenge, I decided I was fine continuing with diapers for as long as needed. I was in no rush to battle this nor did I want to push her if her body wasn't ready.

Essentially, when in doubt, I go with avoidance.

Parenting 101.

Then, on MLK day (we had a lovely MLK day - perhaps I'll remember to post pictures by Easter?), I randomly suggested to Ellie that she try big girl underwear.

She agreed and I left the diapers and pull ups and changing table as is.

Remember - I don't buy into that whole "commit to the process and trash diapers" business promoted by the experts.

Shockingly, she never had an accident (still hasn't!)

Shockingly, she told me when she needed to go! (Whew- I also don't do so well remembering to remind children they need to go and can't get into that whole every 20 minute business.)

Shockingly, as we ran errands and did life, when she needed to go, she could hold it til we reached the next stop and she was fine trying out various potties at grocery store, florist, friend's house, etc! (Again, I know the books recommend staying home and near a familiar potty for a few days but this just isn't our lifestyle. Also, I forgot to pack the travel potty so really, it's a good thing she was responsible and potty trained herself.)

Shockingly, she stays dry thru naps & nighttime even! (I tried to make her wear pull ups at night but she kept those dry so now we've just left those behind. Of course, I still haven't bothered getting rid of them yet.)

So basically, I broke all the "rules," she showed no signs of readiness, and I have done nothing except provide the underwear and toilets - Ellie has done all the "work" and has done awesome!

We are so proud of her!

She is also so proud of herself! In fact, she has been known to tell our favorite grocer store checker her big news, once showed off her princess underwear to a stranger (though thankfully she was a sweet grandmother) & today at a fine restaurant for lunch, she went to a table of ladies (she knew one of them) & in response to what her friend Omi should tell Dado, Ellie replied, "I went potty!")

So very proud of our big girl!

And so thankful I got off easy in the parenting department when it comes to potty training. I know it is a huge challenge for many and I've had friends who have really struggled.

I am very very blessed and thankful.

(Also - I've had some other parenting things that have been challenging so it's not like this parenting is always this easy. But I'll take perks where I can find them.)

This picture has nothing to do with potty training but I don't want to show those pics on the internet.

This picture, however, makes me smile. I walked into Ellie's room and caught her and her Daddy playing Mommy & Daddy with their babies. Ellie had the "family" posing for a pretend picture being taken by an imaginary photographer across her room. Oh that made me laugh! Aren't they such a cute family?!

ABC - Easy as 123! A Kindergarten Update

2014-01-29T00:00:00.000-06:00

Recently, I found this New Year's Resolution Will made one year ago - he was struggling with printing letters and working so hard to write clearly.

Interestingly, his resolution for 2013 was to not "fight my mommy for my medicine" regarding a daily shot he takes. He is the only one in the family who kept his resolution! He takes his shot bravely!

I meant to do this last fall but better late than never.

Will is doing great in kindergarten! Last week, he randomly admitted that he really loves his teacher because she is so hard.

I've observed his class several times from the hallway (gotta love one way windows!) and I adore her too. She lovingly always has a hand or arm on a student, she laughs and jokes with them, she has high expectations, she is nurturing and gentle and firm and creative.

We've had one field trip and several fun events so far.

Will's reading really took off last fall - he began independently reading last spring (I may do a favorite kid books post soon) but his reading has really taken off now. He is reading simple chapter books independently (& sometimes reads ahead of me on more difficult chapter books that I read out loud to him.) I often find him reading on the couch or in his bed. He just loves books and his book loving mama is so thankful. He re-enacts books and gets into character development and takes his favorite books outside to play with neighbors.

The big challenge for Will last fall involved scissors and cutting circles and cursive.

He can cut straight lines but circles were proving to be an issue. At one point, we tried using electric sewing scissors but these were fast and sharp and one day he barely nicked a finger. When I explained my safety concerns to his teacher that we don't have fingers to spare and Will's fingers are primarily tendons making them difficult to repair... yet we want him held to the same high standards and expectations as everyone else.

His teacher spoke to the first grade teachers and together, they determined what mastery for Will would entail and decided that cutting circles isn't necessarily an important life skill but asking for help occasionally is. It's that kind of willingness to hold Will to high expectations like everyone else - yet meet him where he is and work with what he has that I so appreciate.

The other challenge was cursive.

Will worked so, so hard to get his letters perfect...

then one day in early October, I got this text from his teacher:

As a former teacher, I remember the essays and test answers that amazed/inspired/encouraged/brought laughs and I remember copying them and showing them to friends and family and somewhere, I have many of them in a file in my attic.

To think that my own child's paper caught the attention of his teacher to make copies and show it off!

As a mom, I felt so proud and encouraged!

Will's "amazing work" below:

By January, his cursive had improved to this:

Sometimes I just stand in my kitchen and stare at the work he brings home - such beautiful lettering by my 6 year old!

(not to mention- I wondered as an infant how he would even write and now - look at this!)

At Will's school, each kindergartener gets to be "special kid for a week." Each day something about the child is celebrated.

Will's special kid week was a few weeks ago. We made a big poster together featuring pics from his whole life, pictures with his various family members, and pictures of some his favorite places to go and things to do. It was so fun to remember together.

On Tuesday of his Special Kid Week, he was very surprised at chapel to be honored with a character quality award for showing "contentment." (His parents were relieved that he shows contentment at school!)

His Cookie & Lovie joined R, Ellie, & I at the school to witness Will receiving his award. It was such a special morning.

Will and his principals:

He also got to take a favorite toy to show his class which he loved.

On Wednesday, he was supposed to bring his favorite book to class. Like his mama, we can't pick just one favorite!

He decided his very favorite book is The Lion, the Witch, and the Wardrobe. (We're starting book #4 now in the Chronicles of Narnia. He is loving this series.) Since there wasn't a good chapter to summarize the book in a 15 minute class reading, I found an illustrated children's book version and read that to the class. Will also loves poetry by Shel Silverstein so I took one of those books and the kids laughed and giggled thru several of Shel's classic poems.

That was a very special day for both of us!

Sadly, Will got the flu the last two days of his special kid week so we moved his last two days to the following week.

On the next week, he took a medal he earned in a race to share with the class.

For the final day of his special kid week, he took his favorite snack (tiger butter) to share and then we had "family day."

Will had been looking forward to family day for months!

He got to sit on the teacher's stool at the front of the class and he first introduced each member of his family to his class. (My favorite was his Mimi- he didn't know her "real name.")

Then, we each shared something we admire about Will or an affirmation of a quality with his class.

It was such a precious time of each family member sharing about Will, his class listening attentively, and Will's smile growing bigger and bigger. His Lovie was particularly creative, playing off the "i" in Will's name with about 8 character qualities Will has that start with an "i": innovative, interesting, inquisitive, important and more.

I then surprised Will with a video montage on my ipad of some far away family members (& practically family) that couldn't be here but sent me video clips affirming him. His Honey & G-Dad sent videos, his friend he skypes with monthly who has limb differences too sent a great video highlighting a quality of Will I had never noticed before, and even his "Aunt Claire & Uncle Ryan" whose wedding he was ring bearer for sent one. He was surprised & it was fun to "introduce" these important people in Will's life to his teacher and friends.

But then...

each classmate of Will's shared an affirmation of him!

My eyes quickly filled with tears as kids said he "has a good heart," is a "good friend," is a "fast runner at chase," is "handsome!!," "is funny," etc.

Then his teacher also affirmed qualities she has noticed.

Finally, the class read a story they had written about Will:

"Our Friend Will

Will is a handsome boy in our class. He has really cool zankos and loves Skylanders! Will is fun to play with and we like his curly hair. He likes to fish, play in the water, and play video games. We love Will!"

My little boy was practically flying all afternoon!

As was his mommy.

Such a sweet lesson for kids to hear affirmations publicly from their family, their teachers, and their peers...

and also to learn to give affirmation and encouragement to one another.

Finally, last week, Will's class performed a talent show. Various school staff members along with another class and lots of parents and grandparents came to watch. Will's school believes in promoting public speaking skills by giving each child an opportunity to be on stage during the year. They begin this on a smaller scale with the kindergarteners who perform a talent show in front of a small group instead of the entire school.

It was actually a really fun morning. I learned a lot (one kid taught chess strategies!), I was amazed (one kid is a math genius and literally blew us away as he rapidly figured complex math equations in his head!) & I was awed by a graceful ballerina. I loved learning a new recipe from one little girl who taught a cooking class and heard beautiful piano music. There was singing and fun dancing and lots of energy.

Will introduced himself (wearing zancos) & then ripped off his zancos and proceeded to run. He ran and ran and ran and ran and ran. The plan was he wanted to run and sword fight. I downloaded "eye of the Tiger" and he planned to run until the words began.

Well. That intro was longer than we anticipated!

Good thing he runs 1/4 mile every day (almost) after school!

Finally he picked up his sword and demonstrated sword fighting.

What the audience didn't know is that in his head he had created this whole imaginary scene involving a village and bad guys and one hero (played by himself, of course).

Nevertheless, it was so fun to watch so many people enjoy seeing Will's confidence, agility, and strength as he ran all over that stage and bravely fought the imaginary bad guys with his sword.

We enjoyed watching his class perform and I was so grateful to be sitting in an audience of parents who were wildly cheering on one another's kids. I also noticed that it seemed each of the "acts" were child driven - not parent created. It was fun to watch the kids perform what they perceive as their talents and what they take pride in.

Though we have had some hiccups this year (namely - 8am start time! Goodness, whose idea was that!?!? Not good for this family!) and though Ellie & I miss our boy and can not wait for Spring Break & SUMMER!!, we have been so pleased with his year so far. Half day kindergarten has been awesome, he has learned so much, grown a lot, and we are grateful.

(PS- gold star if you hung in there for this long post! Re the post before this on "IP" - thanks for the encouraging emails and comments. I realized, with your help, that I am a mom (like many of you) and that means I enjoy highlighting my kids! Thank you for allowing me the honor of sharing their stories with some of you. I'm glad you guys agreed that it's not "ip" - it's a mommy enjoying watching her kids do life and sometimes being humbly amazed at how they do it.)

Wrestling with Inspiration Porn vs Wonder and Amazement

2014-01-14T10:34:00.002-06:00

Have you heard of "Inspiration Porn?" (I really hate that phrase.) I've just stumbled across it and suddenly am really wrestling. You could google it for all kinds of definitions but basically, my understanding is that it is images of people (typically unnamed children with disabilities) or stories of children with disabilities used to inspire others simply by doing typical things (writing/running/eating/driving/being with friends/existing). Often, there is a caption along the lines of, "What's your excuse?" It apparently implies that people with disabilities are inferior because by doing everyday tasks, they are overcoming great odds. IP objectifies the diagnosis or challenges and not the person.

Am I guilty of this? Is this something to be guilty of? Am I somehow excluded because I'm not joe public - I'm the mother who knows the sweat and work and tears and heartache that go into accomplishing everyday tasks?

What's my motive, my husband asked. My motive is generally that (1) I want to remember what we spent our days doing because I don't scrapbook and this is as close as I'm going to get unless someone can teach me how to scrapbook without all that work and mess and effort and time and organization and (2) to encourage moms who may be just beginning this journey. The truth is, I once lay on a cold table in a specialist's office awaiting her to come back into the dark room and tell us what diagnosis our unborn baby had. It was an agonizing wait. The doctor came back into our room with a big medical textbook in hand. She had marked a page with a yellow sticky note. She flipped open that page and I don't remember much of what came out of her mouth. As a first time mommy to be, in my cute maternity sundress, what I remember was the picture on that page. It was a naked baby. He was screaming - probably because he was naked and cold on a steel table. (I now know that babies don't like to be cold and naked. At the time as a mommy to be, I feared his screaming was connected to his diagnosis. The eyes were blacked out, I suppose to protect his identity. How ridiculous. When there's only a handful of people with a diagnosis, it doesn't take much to find them. (Side note - recently we were asked to enroll one of our children in a study. We were assured that no identifying information would be given to the company - only their gender, birthdate, medications, and diagnosis. Ha! No identifying information? Seriously? We said no.) The mommy to be in me wanted to reach out and grab that black and white picture of that baby off the page and wrap him in one of the beautiful soft, luxiourous blankets I had waiting at home in our nursery for our baby. I wanted to cuddle him and sing to him. Surely this wasn't all there was to the diagnosis? It terrified me, also. The baby looked miserable and alone. Where was his mother?!

(Also another side note - that doctor had the wrong diagnosis. Not that it mattered as far as showing us the picture but she made some key "bedside manner" mistakes with us and we informed the office we would not see her again. In fact, her superiors apologized for her behavior. I explained that maybe showing the parents to be pictures intended for medical personnel might not be the wisest course of action.) I vowed in my heart that if my children's pictures were ever going to be used to help describe a medical diagnosis - it would only be pictures of them approved by me so I could be sure they were dressed cute or doing one of their many fun activities like swimming or running. No screaming naked baby pictures!

When we were given our prenatal diagnoses, I scoured the internet. I read plenty of medical journals and even paid to access medical journals and files. I got as much facts as I could. But what my heart needed to see was reality. I needed to see pictures of cute kids with my kid's diagnosis. I needed to see them smiling, laughing, playing, getting messy, trying baby food, playing ball, going to the beach, learning to swim, eating cake at their first birthday party, pouting in their first time out, going to kindergarten, posing with cheesy smiles under the Christmas tree, running through sprinklers, eating popsicles and all the other million things kids do. I needed to see life and what I perceived at that time as normal.

I needed to see lives refined by a diagnosis - not defined by it.

I needed to see families that were happy and living normal lives - even lives that included doctors and surgeries and so much more. I needed to see the whole picture. When I blog, that little black and white grainy photo of the screaming, cold, naked baby in the medical textbook is always in the back of my mind, as is the mommy to be who is sitting at her computer unable to sleep at 3 o'clock in the morning desperate for someone to show her that her child will live a normal life and will enjoy all the magic of childhood the world has to offer. She's in my mind because I was her. My kids may have differences but our lives are very normal. We have high expectations for our kids. We expect them to just do life. But I am often amazed at how they do life and all they work so hard to achieve. It's not always easy and I admire their creativity and resourcefulness and perseverance.

When I read these articles on inspiration porn, however, I fear I am somehow wrong for admiring these traits I observe in my children which so far manifest themselves in what may be perceived as doing "typical" everyday regular things for their peer group - like bike riding and running and eating and playing. Because I am admiring the character qualities, does that mean I am honoring the person and not objectifying them by focusing on the diagnosis? Where's the line? Am I guilty of inspiration porn?

When pregnant, we heard often were told, "This baby is going to do something really special and amazing." I remember thinking, Good grief! Isn't it enough that my baby has has hand and feet differences? Why can't he just be treated like every other baby? Why can't he be treated normally - and have no pressure yet as an unborn infant as to what he may or may not accomplish in adulthood?! What if he wants to be a doctor/lawyer/garbage man/drummer/maintenance man/gardner? Of course, I expect all my kids to be amazing and do big things - but why the extra pressure on this kid before they are even born? And such an arbitrary thing - like who decides when an accomplishment is special enough? Does he now have to be president in order to meet expectations of doing something amazing since he is born with differences?

Do parents of infants who are born "typical" feel this pressure from others that their child accomplish something "great." Typically, at least in my observations, people just admire the baby's fat rolls and big cheeks and hair and ask how well they eat, sleep, & poop. Yet we got this whole other pile of expectations put on us and our baby - and by numerous people.

I'm not sure what the tie in is here except that even prenatally, we were feeling pressure for our kids to be inspirational when all we wanted was for our kids to make choices to do whatever they feel passionate about. Like any other parent, we want our kids to find something they love and to do it well. We want them to choose to serve others. We want them to be wise and discerning with how they spend their lives. We want them to find deep joy and to feel content with their life choices. We don't want them to feel pressured to have to choose something grand or "inspiring" simply because they were born different. Yet, it is often in just living that they are inadvertently inspiring people. It is in the everyday tasks that others observe their joy or smiles or hard work and are sometimes inspired.

We also heard a lot of this - "You are obviously really special parents." Ummm no. No we aren't. Most of the time we don't know what we are doing - that's why we have smart friends and parents and we ask their advice all the time. I read books and then I question them and throw them away and then cry. We make it up as we go. We pray about issues. We seek counsel. We screw up. We ask forgiveness. We experiment. We figure out parenting - just like every other parent. We aren't special.

Here's the big rub - I admit that I am inspired by my kids. I am. I am guilty of being inspired by my kids. Know why? My kids have WORKED hard to get where they are. We have cried tears of agony. I have watched my daughter fall down hard. Hard. It takes her breath away. She doesn't have the reflexes to catch herself or prevent falls like other "typical" kids. Falling for her is going to be a life long battle. The bigger she gets, the further the fall. It's gut wrenching to hear and she falls probably 5-7 times on a typical day - more when she is tired. Of those 5-7, at least 3 are bad. Lately, she's fallen several times and hit furniture on the way down. I love rainy days but for her, being outside on rainy days means more slippery surfaces and more falls. I keep waiting for the fall that breaks a bone or hurts her head seriously. But do you know what she does every single time after fall? She gets back up. Every single time. Well- first there is cuddling and rocking and often using the "boo bear" on her arm/leg/forehead/back of head. But then, she walks again. She cries and tells me how much she hates falling. She says, "Not again, Mommy! I hate falls." My heart breaks. But I am inspired when she gets up again. She doesn't quit or give up. She refuses to stop walking. It inspires me. It does.
Am I somehow wrong for that?

And Will? My goodness! My kid runs without feet! And he is fast! Yes - I admit, it amazes me! He writes beautiful cursive - without fingers! Do his peers run and write in cursive? Yes. My kid has hand differences on both his hands and his "normal" for writing included a surgery and now holding the pencil carefully between his hands. It takes extra energy and endurance and concentration and a clipboard. Goodness, I have struggled and watched him struggle for years to figure out writing. He makes these incredible beautiful, flawless letters and he makes it look easy. He is fast. But I know the effort he has put into them. I can't help but watch him with amazement. But am I guilty then of objectifying my own child because I find this to be amazing?

Will is brave. He tries new things and attempts various sports and activities. He is brave and walks through doors of a new sunday school class. He goes all kinds of places where staring and pointing at him is the norm. I don't write about it much anymore because he is at an age now where I am extra careful with his privacy - but the reality is that he faces stares and pointing and comments all the time. Typically, we blow it off and keep going about our business.

You know what? I find his bravery and his energy and optimism to continue trying and doing new things and meeting new people encouraging and darn it - I find it inspiring. I do. So crap. Does that make me guilty of ip?

Sometimes I blog about those experiences and hope that my stories or pictures can encourage others. Often, it happens just because we are living our lives and people stop us to tell us they are encouraged by watching us. Just the other day, someone told me that their teenager was convicted by Will's story to stop taking his body for granted and to treat his body better. I wasn't sure how to respond but I suppose if this is 'ip," then many would respond with anger. My gut reaction, however, wasn't anger. Someone telling me this doesn't make me angry. It makes me thankful for my kiddos and even if I don't always agree with what they learn from my kids, aren't we all constantly watching other people and learning from the way they live their lives - regardless of whether or not they have a disability?

But, now, I wonder, am I somehow inadvertently perpetuating that belief that people with disabilities are extraordinary simply because of the disability? Even if I don't blog pictures or stories, people stop us in the grocery store, the gym, the park, etc to tell me these things. I'm certainly not going to hide out at home so that I don't accidentally risk inspiring people in public with my kids who choose to live their lives with the bodies they have been given.

Know what else? I like living a life of celebration! I like celebrating with little walking parties when our kids walked because walking wasn't easy for them. I like celebrating Will's cursive. I want my kids to grow up in a house where they are affirmed and celebrated- whether its for big things or little things. I like being celebratory and looking for things in the mundane routine of life to throw a party for! (says the girl who just noticed she hasn't taken down her "celebrate" banner yet over the mantle from New Year's Eve.) I love that in our local grocery store, the cashiers and baggers love Ellie and know her by name because we spent a lot of hours practicing her walking up and down those aisles. (Wide spaces, level and hard surfaces, carts to hold onto - brilliant physical therapy practice location.) They celebrate her because they too have seen her hard work and I love that.

I read about the image of a girl holding a pencil in her mouth to write which is considered ip -
but I think of the hours of time, the ot sessions, the brainstorming and trying to figure out the best way to help her write. Sure - it's normal for her. Sure - she is writing....
but it does encourage me in my own quest to help my kids write. Am I now guilty of ip because I was encouraged? Or am I somehow "exempt" or allowed to be encouraged as a mom of kids with disabilities - and then doesn't that just contradict the whole idea of ip being about inclusion?

Here's the thing - I like living with optimism. I like living with wonder. I think God created us to experience wonder. I think He wants me to delight in small and big things. I think there is so much extraordinary to be found in the ordinary and too often, we just miss it. I don't want to miss it & in having Will & Ellie, I have learned how to open my eyes to the extraordinary. I feel like my joy is often so much greater at what people would consider "typical"milestones because I know they are not guaranteed. I perhaps have wondered myself at what my kids might accomplish. I have wrestled with knowing one of my kids may need a wheelchair someday and the struggle that brought to me as I wrestled with not wanting to put such an emphasis on walking. I wanted my child to know that I always accepted them exactly as they are and yet I felt I also needed to push and work with them to reach the goals of mobility. My brain was (is) exhausted from that mental back and forth between acceptance and pushing and not being proud of my children based on their accomplishments.
(but you know, not wanting them sitting on my couch the rest of their lives because they were never motivated to achieve anything.)
(My brain is an exhausting place to live.)
(This is why I read so many fiction books, I've decided. It's my escapism from my own brain.)
(I don't meant to imply I'm not grateful for my brain. I am. It just wears me out with it's back and forth and overthinking.)

I don't want to miss living in wonder. I don't want to miss out on the everyday miracles that I have a special privilege of watching.

But, more importantly, I don't want my kids to somehow resent me being inspired by them for doing "everyday" things. Do I need to shut down or off my natural inclination to be amazed or inspired? Do I need to simply set expectations and when my kids reach them, set the next set of expectations without ever acknowledging or praising accomplishments because they are no different than what their peers are doing? I don't want to offend or negatively affect my children when they are adults because I take such delight in seeing them do life and, to use what is apparently an offensive phrase, "overcome challenges?" I expect my kids to behave and act appropriately and I think we treat them normally. (In fact, I vividly remember disciplining Will for grabbing a toy from another kid when he was a toddler. Inside, I was cheering and ecstatic that he could GRAB a toy from a kid with ten fingers! But he didnt' know that.) I catch myself telling Will and Ellie to hurry up when headed to the car. I expect them to keep up, to carry their toys to their rooms, to eat with silverware. We don't make excuses (or try not to) for doing age appropriate tasks. And yet - I'm often amazed and encouraged by the fact that my kids do ordinary age appropriate tasks.

Is this wrong of me?

Should I never share my joy or blog about amazing "ordinary" extraordinary things my kids do because then it is somehow ip?

I see pics all the time on my husband's fb page of kids doing regular things - like writing, eating, jumping on trampolines, running... but if I post something like that on my blog, am I suddenly guilty of "inspiration porn?" I don't often struggle with jealously of my mommy peers - or at least I've figured out some really great techniques that work for me when it creeps in... but if I don't get to post pictures or videos or brag on my kids achieving regular things like they do just because mine have disabilties and therefore it is considered "ip", well, I'll be jealous and resentful. That doesn't seem fair and I love sharing pictures of my kids doing regular things! When my friends post pictures, it's not ip because their kids don't have disabilities. Are the rules different for me because my kids have disabilities?

It seems that many of the people offended by what is termed ip, are adults with disabilities who want to be included and seen as just normal (whatever that means) adults. They don't want to be known by their disabilities or put on a pedestal for being inspirational in doing everyday things. Yet, I also know adults like Jon Sheptock, Nick Vujicic, and Kyle Maynard. All of these men are amputees and travel giving motiviational, inspirational talks and serving others (like military men who are now amputees or prisoners) with their stories. Their "disability" has enabled them and provided them with a platform and a story to share about overcoming struggles. I greatly admire each of these guys and have made efforts for Will to meet each because I do believe they can be great male role models and mentors for him in a unique way.

So what's a mom to do? What's the line here? How do I avoid ip while still marveling and delighting and standing amazed at what my children do? Or can I just throw out the whole ip thing and keep celebrating my kids the way my mother's heart desires to? Help!

(also - for the record, I don't like the term "disability" as it implies not being able. I believe we are all able. We all have strengths and weaknesses. I don't like labeling my kids. But for lack of a better term that is culturally understood - I go with disability.)

Christmas 2013 (part 2) & New Year's & a Birthday! (Whew)

2014-01-09T23:24:00.000-06:00

3 weeks out & I'm finally posting Christmas!

Here's to more timely updates in 2014.

(And WOW! Thanks for those comments earlier - seriously I figured only my mom read at this point. That was so affirming & nice to hear from people. Thanks, guys!)

We did Christmas with R's family in our home the weekend before Christmas. On Christmas Eve, my family showed up!

Lovie & Cookie travelled a long way (7 minutes) and spent the night with us so we could pretend like they were really visiting.

Will woke up on the 24th sick and I quickly took him to the dr. Thankfully, it was strep and not the flu. He was miserable most of the 24th but once the antibiotics kicked in that night, he was doing so much better.

Having a sick kiddo kind of made for a weird Christmas Eve - we were so sad to miss church at our new church and had looked forward to taking Cookie & Lovie to our church for the first time. But a day hanging out at home together was nice too.

Lovie brought her parts of the dinner to my house to prepare - with sous chef Ellie assisting, of course!

Ellie stuffed her first Christmas turkey!

(Which means she is one turkey ahead of her mama. I've managed to avoid the stuffing part for 30 something years.)

I was so excited to host not only my side of the family at our dinner table but also our dear friends, the O's & their grandpa.

But - with a sick kiddo, those plans changed.

My sweet friend brought over the salad and dessert she had made for the dinner & I loaded up items I had made into tupperware for her.

So I guess we still all shared a meal - just not the table or the watching of kids opening a gift.

(This is a terrible, terrible picture of me. Why am I making that face? Should have put on some makeup & brushed that hair. Sorry - I blame it on sick kiddo.)

Ellie & Lovie preparing dinner

By bedtime, Will had perked up & the kids each opened a gift from their grandparents.

Ellie is in a funny stage where she makes hilarious faces and poses for pictures.

Stockings all ready & kids ready for bed

Christmas Eve story time

Will had written a thank you note to Santa and was beside himself with excitement when there was a reply note waiting for him in the morning!

Ellie was beside herself with excitement at bedtime. She really got into Christmas this year - singing carols all the time, yelling Merry Christmas to strangers, and announcing,

"Santa is my favorite old person!" Smart girl.

She later modified that to, "Santa is my favorite old person but I really wish he was a princess."

After reading the Christmas story from Luke 2 in our bed, the kids rushed to wake up their Cookie & Lovie (who had been awake for awhile because my kids still don't wake up particularly early for Christmas but C & L are good at pretending.)

Finally!

It was stocking time!

More than anything, Ellie has wanted a pink flashlight for months. I have no idea why but it had something to do with her babies.

Basically, she already thinks like a mommy & every gift on her wish list had to do with taking care of her babies or something she thought they might like. (like a lamp - she requested a new lamp to help her babies see better in her room.)

Thankfully, Santa pulled through and managed to get her a pink flashlight. She was so very, very happy!

New soap!

Ellie got some fun feathery bracelets which she shared with Cookie & Lovie

After stockings and coffee refills & Mimi got here, we headed to the living room for presents under the tree.

Interestingly, the kids had walked by the tree already a few times & even posed for this picture yet neither one had noticed the big, unwrapped gift to the side of the tree! Might need to work on their observation skills.

Will had really really wanted this switch & go dino. He loves it.

I kept noticing how fun it is to have Christmas gifts with little kids - they want really big items that don't cost a ton so it makes the tree look really exciting. I know as they get older, eventually they will prefer very small items that cost a lot and the tree won't look nearly as exciting.

Finally, we directed Ellie's attention to her big surprise gift -

a new trampoline!!

I think she was ecstatic!

(For some reason I am having a hard time uploading videos but trust that I have some awesome videos of her jumping not only in her splints but then barefoot!)

Excuse the soapbox for a moment...

As I watched her jump and laugh and show off, I was filled with such pride in her accomplishments and awe and humbled at how far she has come. Tears filled my eyes. Initially, I wanted to email the video of her jumping independently to a few certain doctors who told me she would never walk or wouldn't have a good quality of life (again - I reiterate as I did to that particular doctor - We do not define quality of life based on mobility.) And I really wanted to send it to the doctors who suggested we abort her.

I kind of wanted to send a "take that" message.

(I know - not a very good Christmas message.)

But then.

God convicted me and instead gave me eyes to see with grace.

I realized that really I wanted to send this to doctors and to pregnant moms and dads to be who are given scary prenatal diagnoses.

The thing is - doctors know a lot. They do. We knew incredible details about each of our kiddos before their births.

And that information can be very beneficial. It enabled us to make better decisions to help have the best specialists we could have on hand at the birth of each kiddo. It helped us prepare our own hearts and our families and friends. It helped us make treatment decisions. That information was vital for us and could have been life saving in some cases.

But doctors don't know it all. And really great doctors know that.

As much as they may know about a baby in utero, they can't really predict quality of life. They can't know that in three years, that baby may jump barefoot on a trampoline on Christmas morning like a very typical three year old. They can't measure possibility. They can't predict perseverance.

They can offer hope. For the doctors who offered us hope, I want to send this video too. Thank you for believing in our daughter. Thank you for being honest with us, for explaining realities and possibilities and fears, but for never saying "never."

Thank you for encouraging our hearts in our darkest days.

For the moms and grandmoms and aunts and friends out there who may stumble on this blog in your own dark days as you wonder and worry about a prenatal diagnosis - you are the reason I write (when I remember to blog, that is.) I pray you will see pictures of my kids - both with rare diagnoses and differences - and that you would see hope and how we have embraced our normal - and it's often no different than the normal of their peers. I pray you will see pictures and read our stories and know that you too can have hope. You don't know yet what your child may accomplish. You don't know what they won't accomplish. You don't know how you may redefine what you thought was "normal" or "expected" or even important to you - how having that baby and child in your arms will make you rethink so many standards you set and that can be a good thing.

You can't measure possibility.

Every time either of my kids hops on this trampoline, I am so thankful. I am thankful for kids who can jump despite having joint issues or missing feet.

And I am thankful for a way to burn off energy on cold winter days. It has been a LIFESAVER!

Back to Christmas now...

more gifts (& funny poses by Ellie)

jumping break

I love that each Christmas, my kids have received books & they always stop gift opening for awhile to read. I just love that.

Will reading to the family.

Christmas morning books

We always celebrate Christmas night with long time family friends.

Will took his perplexus puzzle - which captivated men of all ages!

Ellie insisted on wearing her crown and also convinced Curtis to play babies.

I'm pretty sure I used to make him play babies a long long time ago too.

Dinner! The bearded plaid guy on the left is newly engaged! We are so excited.

Jane always has fun dinner table conversation starters - I look forward every year to our topics.

Curtis after being instructed on how to properly hold the baby

William David squared

Dish washing with Sarah (our flower girl 10 years later)

our little fam

Ellie & her fav Dr. Rick

Ellie apparently decided this was a fun party and part way through dinner, she had an idea.

She first asked Dr. Rick if she could spend the night. He sent her to Mrs. Janie - who agreed that she could but she had to wait 2 yrs. Ellie was in tears. We were cracking up that she wanted to spend the night so badly - she has never asked to do this with anyone besides her grandparents! When we got home, she began begging me to spend the night at Dr. Rick's if she potty trained successfully.

Deal taken.

I suspect she was just enjoying the attention of being the only princess there and wasn't ready for that to stop!

A few nights later, we celebrated R's birthday. We built a fire outside and I made his favorite dinner.

After dessert, we bathed the kids and tricked Daddy into one more trip out to the firepit...

where I surprised him with some of his best friends ready to hang out.

The kids were put to bed and R had fun with his friends for the night.

I couldn't believe I actually pulled off a surprise!

Our slumber party with friends New Years Eve party took a different twist this year into a party at our casa with good friends.

R smoked some meat, friends brought food and kids in pjs & we enjoyed dinner and hanging out

These two little mommy best friends are just precious.

Ready to roast marshmallows by the fire

Will read stories to baby H

at 10 something, I put the kiddos on a quilt with a movie on the dvd player - amazingly, they made it til 11:30pm and everyone was very happy!

So we rang out 2013 with a bang - lots of holiday hosting and parties and time with family and friends. The house was often messy and full of people and I love that. We made lots of memories, started some of our own traditions, broke other traditions, operated on not enough sleep, and laughed often.

It was messy and chaotic, busy and beautiful, full of restless anticipation, excitement, wonder, awe, peace and perfection all wrapped up together.... kind of how I imagine the stable scene must have felt a few thousand years ago.

Christmas 2013 (part 1) (finally)

2014-01-06T23:02:00.000-06:00

Well, Christmas happened.

2 weeks ago, apparently.

It was wonderful... and I just never sat down at the computer to blog. Not once. In fact, I forgot to check email for over a week. I confess, I didn't really miss emails. Or blogging.

We hosted four different groups for two Christmases, New Years, & R's birthday. It was perfect - except when it was messy and tiring and chaotic - and somehow that felt exactly perfect for the Advent.

Blogging just wasn't high on my priority list - menu planning, cooking, reading Christmas books, cuddling, being with friends and family, reflecting on the coming of the Christ, long naps, - so much just seemed more important.

So - just in time for the Epiphany (barely) - I present part 1 of 2 of our Christmas:

attempting to take a perfect Christmas photo with these two budding entertainers was hilarious

Ellie informed Will this Christmas that she has 3 best friends but he is her favorite. She also plans on marrying him. She says "Because I love him."

We made some Christmas crafts and did lots of Christmas coloring.

I keep piles of Christmas books by the fire and loved catching the kids frequently reading

(I love having holiday themed books for major holidays that I only pull out for that holiday.)

I'm telling you - these two are constantly putting on shows. We laugh hard around here.

More story time

Holiday in the Park

Tubing!

Ellie loves to cook! She also loves to eat - this makes cooking with her kind of difficult. The cook must work quickly because the sous chef eats the ingredients.

But I LOVE it.

Ellie helps me every single night prepare dinner. She begs to help and loves cooking and learning about different foods. This particular instance, we were making whipped feta cheese with kalamata olives, tomatoes, garlic, and shallots. Ellie loved it. What kind of 3 year old eats that?

(Notice her hand in the tomato container - I'm telling you - she is sneaky.)

One day, I took the kids to see Santa at a friend's party. I figured this would be perfect - we could see Santa without the long lines of the mall.

My kids were scared.

This was as close as I could get Ellie and she refused to smile.

Will finally agreed to go talk to Santa and basically he reviewed the list we mailed.

(Ellie's list actually ended up printed in the newspaper!)

The week before Christmas, Ellie's dance class did a little Christmas show. Lots of moms and dads and grandparents and friends came to watch and the girls were so cute. Dance class with Ellie is one of the highlights of our week.

Ellie's Daddy brought her flowers after her dance show - she was one proud girl and insisted on putting them in a vase in her room.

Will celebrated Christmas with his class with a pjs and pigs party - the kids had fun eating breakfast together and getting really excited for Christmas!

Silly kindergartners - group hug on their teacher

Ellie loved to help me "decorate" - and even did some of her own decorations

she hung up one of her aprons on the tree and I loved it - so it remained up all season!

(and still is up because I have yet to take down the tree.)

We hosted Christmas this year for the very first time... and decided to go big by doing it twice!

First, R's side of the family travelled here from all over Texas. The kids were beside themselves with excitement.

We celebrated Daddy's bday a little early while his family was in town.

The kids LOVED having their cousins spend the night. We filled Will's room with mattresses and my kids were so excited.

Rainy, cold weather changed our plans for Saturday so we improvised to wear off energy with a little Dance Dance Revolution.

and some woods exploration in our backyard in between rain showers

The kids were so excited for gift time on Saturday!

I found these perplexus puzzle balls right before Christmas and they were such a hit - with both kids & adults! Santa managed to get our family one too.

Playing with new toys and cousins all afternoon is a perfect way to spend a rainy day

I love to set a pretty table and had such fun setting and resetting my table for each meal. I have to admit - it was one of my favorite parts of the hosting.

This was my first time to do a real Christmas dinner. By the time I sat down, I realized that one of my dishes was luke warm... so I think I didn't quite get the timing perfect. That was hard for me - when feeding a big group of people and trying to get the timing right on the food along with everyone to the table. Oh well - learning experience. I did love cooking for family and being in my kitchen while I listened to kids playing.

In between Christmas celebrations - more cuddling and reading by the fire... with sweet Meow Baby (now a year old!)

One cold morning, I took the kids to a nearby indoor water park for some much needed water time. Water is my happy place. It makes me feel peaceful and centered - even if its highly chlorinated. The kids loved it (except Ellie resented being made to wear a life jacket by the lifeguards.) It was a great way to wear off some winter energy on a cold day.

Round 2 coming up soon... I promise (not that anyone cares except my mom who told me she was ready for me to update pictures...)

Will is being honored all week at school as "special kid of the week" so I do want to do a school post soon!