Welcome to my world

Chick-fil-a rocks!

2018-04-12T13:34:00.001-05:00

Traveling alone with both Abby (special ed) and Millie (4yr old sister) to an appointment is never easy. I usually try to avoid it by having Dad, big sister, or a caregiver come, but sometimes I don't have a choice.

On one particular day, we had to go to an appointment an hour and a half away for Abby, and Millie was a rockstar! This meant we had to stop for lunch, but the prospect of Millie and Abby in a restaurant by myself was right up there with licking the doorknob at the doctor's office on the way out... no, thank you!

Dramatic? Not really! Somedays I feel like the ambassador for special needs and other days, I'm capable of biting the head off of anyone who looks at us cross-eyed or maybe even looks at us at all. I'm not proud of it, but it is a fact I'm aware of and aim to avoid contact with other humans on the "not going to play well with others" sort of days.

This day was the latter. I was tired of being hit, pinched, and pulled by Abby the entire one and a half hour trip to the doctor's office. Adding to the fun of a regular appointment, this one was particularly hard. Pretty sure it sucked a few years off of my life with the reality of a seventeen-year-old special needs child who will never be adulting. It's really too much to take in by oneself. I wanted to crawl up in a dark room and have a well-deserved pity party, not go to a restaurant! I was barely feeling sane enough to drive back home from Columbia, let alone take on dining out. I was hoping Millie would forget in the chaos, but Daddy had lovingly reminded her of the "fun day" last night before bed... nice SELL Daddy!

Abby had "Houdini-ed" out of her restraints and could reach me in the car before we even pulled out of the parking lot... UGH! It was going to be a long, painful ride home. I know she isn't trying to hurt me, but pinching, scratching and hair pulling are painful regardless of the intent.

On a necessary public service side note... I found out my smartphone is smarter than I knew as I redirected my guy, Siri with an Austrailian accent who calls me "Love", to get me to the nearest Chick-fil-a. Did you know Siri could do that? In maps, I asked him to redirect me and he did. I'm easily amused, so it temporarily lifted my spirits enough to put a smile on my face and get me to pull in to the much-anticipated lunch.

I took a picture of the location bc I knew I'd forget

Big breath...
Going anywhere with Abby is akin to dragging a stubborn donkey around. She either needs to be pulled in the right direction, restrained from taking off in the wrong direction or grabbing anyone or anything in her path. We're like a circus act without the stunts, unless you include me jumping around her like a crazy woman trying to keep her from pulling on strangers. She really is no respecter of people. She pulls on all equally regardless of size, gender, or race. That's beautifully politically correct, right? And her "vocalizing" (sounds way better than random screaming) gets the attention of those who may have missed our walking-hug-drag procession in line. I try to smile as we become the entertainment and wait our turn to order as if everyone wasn't staring at us.

I was wrestling Abby through the line, holding her in place while ordering and attempting to keep her octopus arms from tearing their signs and clearing off the counters loaded with hot food! I was sweating from the process when I remembered another reason why I love Chick-fil-a, they acted as if nothing was out of the ordinary and took my order. Actually, it was "their pleasure" to do so!

Millie doesn't quite get Abby still being in diapers but she understands helping her eat!

They politely brought our order to the table (another huge deal as there is no way I could've done it). I've actually had fast food folks watch me wrestle her to the table as I darted back for our tray. I fell into the booth across from Abby hoping she couldn't reach us after wedging her far enough into the seat so hopefully she couldn't escape.

I urged Millie to quickly start eating because Abby eats like it's a race to stuff as much food into her mouth as quickly as possible. Surely she'd win an eating contest if speed was the goal. Our family knows once the food is gone, we are all done eating whether our food is gone or not. Either we leave or we keep feeding her our food because that is the scope of her world. We do work on it, but being able to eat in public is a big deal... baby steps. I did not feel up to working on that particular skill that day.

"Happy Dance" for ice cream

Becuase not all fast food restaurants are created equal, Chick-fil-a clientele isn't either. As we finished up our lunch, an employee brought us a dish of ice cream. Some fellow diner anonymously bought us ice cream. They never stopped to say anything but just blessed us because they noticed and wanted to. I could've cried on the spot!

If that wasn't' enough another employee asked if she could bring my girls little-stuffed cows they had in the back. Um... yes! Millie was in love and another nice gesture was just too much!

She hugged the cow on her own... no posing because I'm not that good

Indeed, life with Abby is a bit overwhelming, but her crazy is at the very least matched but usually exceeded by the blessings! We may get stared at more than anyone else, but we also get doted on by perfect strangers more than most. It is truly humbling, but once again the hard of that day was brightened by the love we were shown by strangers at a Chick-fil-a!

5 Reasons to Make New Friends

2018-03-22T17:04:00.000-05:00

*I started this post and shelved it more than a dozen times in the past couple of years. I struggle to press the publish button because it's still rawer than I'd like to admit. It needed to come from a place of peace and gratefulness for so many new friends who took a chance on me.

I remember being super excited to re-invent myself and make new friends when I went away to Liberty University at eighteen. As college students do, we jumped into new relationships with reckless abandon, spending endless hours pouring out our hopes and dreams to each other. Oh... the beauty of those days. It was so natural, seamless, and filled with innocent optimism.

Fast forward twenty-some years, after marriage, kids, sickness, more moves and a large dose of messy life, the fear of never having friends again started to suffocate me. I found a very different girl in this new place than the one who had bravely made several moves before. Not only was I was timid and nervous, but I had some sharp edges I didn't recognize. I was skeptical of new people, tainted by past relationships, wary of the effort it would take, and more insecure than I had ever been before. I wasn't sure I was up for the challenge of building friendships again, nor did I see myself as a friend worth making. I don't think I knew who I was anymore, who I wanted to be, or what kind of person to seek out. I couldn't see past my broken mess and didn't know how to ask another to do so either?

Lifelong friends... maybe not the best pic of us but I love it because it shows some hard life among us

Life happened and I've changed. My friends and I have evolved over the years. We've loved each other from where we were right into who we are and made unwritten promises to endure through to who we will become. Those relationships were hard fought for. They embody endless amounts of grace given and much more received. How do I start over at, "Hi! My name is Allison?" I just couldn't bear it!

Starting over is daunting.

I may have known in my head making new friends wasn't a luxury but a necessity but it didn't help me find them. I knew success or failure in this place lay in the balance of being bold or hiding in a corner but I felt helpless to choose. I had to persevere to find gals willing to open their hearts when presented with mine. It's a vulnerable place to be. After leaving my friends and family, being exhausted without help (Abby), and still sorting through my belief that God was good after Millie's brain bleed, I was sure my heart couldn't handle anymore. Was it even worth it? I've been unpacking that question and here's what I found...

5 reasons to make new friends:

1. New friends challenge who we are today

New friends don't know who we were. They don't give credit for what we've done in the past. They force us to be the person we want to be each and every day. We don't get to live in the glory days of high school, college, or early ministry. They see us for who we are today, and can challenge us to keep evolving and growing into who we will become. New friends force us to answer questions like, "Who am I? How do I want people to see me?" It's easy to tell someone what I used to be, but it matters little compared to who I am today.

There is such a chasm between telling about the past and going through it together. Today we are still becoming who we want to be rather than just celebrating who we once were. New friends challenge us to be the person we think we are or the person we've spent a lifetime portraying. We cannot build on who we once were but have to start with who we are.

2. New friends add spice we didn't know we needed

People who have moved know what it's like to be new and tend to be better friends because they have had a little more practice... successes and failures. When we live in one place our entire lives, there's a chance we can still boast the friends our moms made for us when she and her bestie had babies. Sure, we may have learned to make a friend or two on our own, but there is a chance we may not have needed to. New friends, on the other hand, have learned to go the extra mile and teach us how to love bigger and better. They can bring an exciting perspective to our lives with new places and experiences.

new friends

3. Our hearts grow with each new friendship

It's been said we only have so many connectors, but is it Godly wisdom or human perspective? There may not be room for unlimited besties, but there should always be room for more. If we limit friendships based on my perceived capacity to love, we could be trying to love with our own power instead of letting the love of Christ flow through us. We love best when HIS love pours out onto others. We don't love well on our own. If it is HIS love flowing through us, then there are no limits on our capacity to love. We don't have to let go of the friends behind to embrace new ones.

4. New friends give us space to let go

New friends help us let go of old friends. Sometimes we hold on to people long after their expiration date. There is a friend who is meant for short seasons, others for longer, and a precious few who endure the test of time and distance. All are valuable and a gift, but not all are supposed to be forever friends.

When we make time for new people, we are able to hold other friends loosely. There are times we need to love people enough to let them go with our blessing. Letting go hurts but can free both of us to be all God wants us to be. We may be holding each other back or getting in the way. We need not choke the life out of friends because we're white-knuckling their shirt tails worrying they may find someone they like better. Give them room to find fresh air instead of sucking it out of the room.

surprise blessings

5. God protects us with new friendship paths open and closed

We don't like to think of God removing people or hindering a friendship because we may not be good for each other in personality or during a specific season. He may also be making room for a better match at the time. When we hold on to a sinking ship, we could go under with it and that loyalty would be lost at the bottom of the ocean. When we are a strong lifeboat, we are more capable of pulling the damaged to safety; but when we are patching our own holes, we add dead weight.

I tend to get overly excited when meeting new people. In doing so, I can get discouraged when we end up being "high five" friends instead of the sisters I envisioned. God may be protecting me (or them) from a better suited connection. He may be saying "no" or "not now," but I can confidently trust when a door is shutting. I don't need to barge through ripping it from the hinges because that never turns out well. It only amounts to heartache and a waste of time and energy.

Wasting time

I've been guilty of feeling I wasted time investing in the wrong folks, but time spent on people is rarely wasted. And the time they spend on me is a gift I grow and/or learn from. Even if we aren't meant to be soul sisters, we could be happy acquaintances, right? Our kindness is never wasted. We don't need to let fear of overwhelming attachments hinder but nudge us to set healthy boundaries.

Everyone won't fit into our "family". We are unique. I've found some LOVE us and others are positively frightened by the way we do life. We live with a large measure of chaos. There are types who are drawn to us and others can't get away fast enough.

I'm finding we can have a level of friendship either way. I can learn from and enjoy those who seem to require inordinate amounts of peace and those who entertain heightened crazy. I enjoy having both in my life because variety is good. LIfe is largely about learning to accept, embrace, and get along with those who are different.

#INAM

The last thought on friendship is the hardest for me to actualize, but it may be the most important...

It's Not About Me

I want to think friendships are about enriching my life, rather than focusing on what I have to offer. I want to move on when I am injured or pained rather than stick with it when I am offended and assume the best. Friendships are multifaceted in the sense we add to each other's lives by giving life and helping each other grow. If God exists in three persons it's a good indication He intends that for us as well.

New friends may need us even though we don't think we need them. Sometimes they can be hidden or surprise blessings. I tend to reach out because I know what it's like to be new, but I've found some beautiful gems I hadn't sought for any reason other than empathy and found true friendships.

Satan strives to isolate because when alone, we are easier to conquer or at the very least discourage. We need people to speak truth into our lives when we are believing lies, lift up our arms when we are weary, and often just simply witness our lives.

Give it a try... make a new friend today!

Another birthday... 17

2018-02-02T08:41:00.003-06:00

The picture I was striving for was juggling fewer plates so everything wouldn't shatter when one broke or went askew. I'm seeing the need for s-p-a-c-e in my life to do the expected unexpected. I've had a short season of wondering if I am doing enough. I'm not used to it and my natural response is to add something. It's weird to have time to get my groceries, make dinner most nights, spend time with my girls, and nurture friendships.

I was feeling uncomfortable in this new skin used for competitive swimming rather than the old treading water after being thrown overboard during a storm. I started to wonder if I was amiss in what I was doing?

I ask HIM to "order my days" but question the results. Hmmm...

A not so gentle reminder

The last couple of weeks have been tough. A not so gentle reminder why I needed the extra space I'd been growing. It didn't make the days any easier, but I was in a better place to absorb the "hard" required. Rather than pushing the adrenaline button, I'd have to recover from later, I switched gears and could let a few things fall by the wayside (Christmas tree is still up) rather than taking years off of my life. The situation was partly emotional baggage mixed with some extra physical. It was the sixth anniversary of the loss of our baby, Abby's seventeenth birthday and Abby's caregiver has had some changes in her life highlighting a need for more help at home and school.

Baby loss and Abby's birthday

Abby's birthday falls a few days after the anniversary of the baby loss part of our story. It is usually a melancholy day where I dream a little about what it would look like to have another one around here and wonder what our house would look like with a little guy. I think the Lord heals us in bits and pieces as we are ready. I don't think I'll ever "move on," but I know I hurt less and long a bit more for eternity.

Abby's birthday comes a couple days later with a mix of emotions. It's historically been tough for different reasons. It was hard when she was young because she was unable to open gifts. As soon as she acquired the skill to open, she really had no desire to do so and could care less about the process. There may have been some playing with the paper but gifts were of no consequence to her. This pretty much sums up how she feels about cake or any other treat, decoration, or party affiliated activity as well... completely indifferent. I think this year I was tired of faking a party for someone who really didn't want it.

She has seemed to grow in her affection for "the birthday song" which makes all the birthday wishes more pleasant as my family likes to sing to each other for birthdays. I do believe it is my sister's fault because she is a birthday crazy and is the one in the family with a lovely voice.

We decided several years ago that Abby's birthdays were for her sisters. We didn't want them to get the picture that Abby was less by not celebrating and were content to do a family party because everyone else seemed to enjoy Abby's cupcakes and the excitement of her "opening her gifts" which is really just a game of "finding her toys" we put in bags with tissue paper. We usually add something she needs so we don't feel like loser parents entirely.

It's more me than her

Most of the angst of each year lays on our shoulders rather than hers and for this I am grateful. It is my heart that hurts when we've never had a friend birthday party or a friend of any kind for that matter. She has friends but not peer friends, nor is she capable of making, maintaining, or even caring about that missed aspect of her life like this little guy...

This struggle is real. Please watch and have your kids watch because there are many kids like him. Friendships are hard, especially for those with special needs, but also for those of different races, physical features, and personalities.

Future Fears

The fears usually churn silently inside of me. I think I'm doing well, but my body often tells a different tale of a sickness or flare up. I hold on to known and unknown fears looming in the future. We've seen a view of life without Abby and it hurt more than I could've ever imagined. My hands were empty as I sat next to her hospital bed because there was nothing I could grasp for control. It's taught me to "Number my days," (Psalm 90:12). Watching her motionless with tubes breathing for her was a painful reminder that tomorrow is not guaranteed. I hate this picture but love how it takes my focus off what doesn't matter and unto what does... I don't want to miss a day.

Yet all of that is swirled with so much uncertainty. She's getting older, my hope for more independence shrinks, and I'm tired... 17 years. This warrior mom is weary. I see the lines in my face and the gray creeping into the corners of my skull, but my caregiving duties haven't faded. I'm still on my knees each day putting on braces, lacing shoes, changing diapers, feeding, bathing, and begging God for more purpose. I know there is purpose but I want more, fresh purpose poured out just for today. I know instinctively it is there, but asking for God's grace to allow me to see it. I want to need less, but find myself needing MORE. But in the wanting I find more... so much more.

Jeremiah 29:13 (NIV)"You will seek me and find me when you seek me with all your heart."

Birthdays... such a dichotomy of emotions swirling together in a heart that is both entirely filled up with gratefulness and fears. Thankful my fears don't cancel out my faith.

Each day is a new set of "challenges". We will adjust; we always do. God has no problem leading, carrying, or wiping away my tears. He holds me close when the tears and fears are fresh rather than pushing me aside in frustration over my lack of faith. Patiently He continues to teach and helps me grow stronger with each new obstacle course. He allows me to be faint but never leaves me alone in my weakness or dark places. He's teaching me to pray for stronger shoulders rather than a lighter load.

2018 New Years' Resolution: Wasting Time

2018-01-16T07:59:00.000-06:00

A to V images

I've written down New Year's resolutions in the past.
This year is not one of them. I felt a sense of relief in releasing myself from the ritual, but still aiming to move forward with an alternative approach. I will amend and reassess my goals, but for New Year's resolutions?

I ain't doing it! (random link because she kills me... you're welcome)

Don't get me wrong. I like goals. I want proof that I've been here and made a difference... something I can see or at least a box I can check. I think it's important to assess our lives and be intentional in how we do them rather than cruising on auto-pilot or being like a pinball machine and getting knocked around without purpose.

I'm striving to quit fighting this life stage of overload and find simpler ways to make changes. Every year is different. Putting too much on myself leaves me frustrated and disappointed, but doing nothing isn't a stellar approach either.

So what do we do?

The Lord has been challenging me in themes during the past four years. It may have taken me some time to realize they were God driven goals because I've always thought of God's leading as complex and something I had to figure out like a puzzle... not so much!

Be still

The first year back in SC was hard... really, really hard. There were a lot of tears and despair, but all I kept hearing when I cried out to the LORD was, "BE STILL". I wanted to DO something to make my situation different, but I needed to give myself time to draw closer to HIM and grow before I'd be ready for what he had next. I thought it was a waste to be still until I realized it was the goal rather than the means to a goal. Being still and listening isn't a skill to master but a way of life I'd need to adapt.

Time with God is never wasted. I needed to learn the value of the quiet and trusting the process HE was walking me through. I wish I had spent less time fighting this stage instead of pushing to get through it. There is such value in leaning into the hard places until the purpose is fully brought to fruition, but we have to be tuned in to HIM to see it.

http://www.christianstatements.com/be-still-and-know-that-i-am-god-psalm-46-vinyl-wall-decal-3

Get healthy

The next year ushered in another pair of words... "GET HEALTHY". I kept wanting to feel or be different from my quiet, still place. I wanted the "hard" to go away and return to some kind of normal; but instead of getting any easier, things got harder. It was somewhere in that second year I realized I had to be the one to make changes and take steps to get healthy rather than waiting for a fairy godmother to show up and magically fix me and the crazy life swirling out of control around me.

I lived at least part of my days in despair. All I could say was, "Lord, this is too much." I wasted far too much time blaming or trying to change the situation rather than letting the Lord change me to match the place HE had me.

Instead of getting back to a healthier place, HE wanted to move me forward to a new, better place. I had to surrender my despair and start taking steps to be healthier. The steps often seemed small and insignificant, but as I strung them together, they helped me to slowly move out of despair into doing what I can do rather than lamenting what I couldn't do.

incourage.me

Order your day

The third-year in SC started showing signs of life and living. Our circumstances hadn't changed, but I had. In the midst of getting healthy, I found the one thing that radically changed my life and it was asking the Lord to ORDER MY DAY.

There is one truth about my life I have fought and/or denied for the better part of almost seventeen years. I hate to admit it, but life with Abby is often... too much. Sometimes it is physical lack of sleep or caring for her growing needs. Other times it is the mounds of paperwork, scheduling, and unknowns that emotionally take their toll. No matter what the cause during each season, the reality is I cannot do this life well without God leading or carrying me.

I need Him to pick and choose what I do each day. This frees me up from the guilt of all I cannot do. I am doing what I am called to... nothing more... nothing less. HE orders my day. I hand HIM my "to do" list and listen.

Godminders.org

Choose people

"CHOOSE PEOPLE" was squeezed into the midst of this past year. I have to keep choosing to invest in those around me, even when it is hard. Friendships are hard and messy.

I think I'm an easy friend because I need friends, and I have little expectations of most people. Yet maybe I'm hard for some because I ask for authenticity and digging deeper which may be too heavy at the speed of lightning I engage? I don't really have the time in my life for shallow, casual relationships. I don't care to discuss the weather or fashion trends. I'd prefer to get right to our stories and what the Lord is doing in our lives.

Even when they hurt,
even when they're hard,
relationships are always worth it.
People are always worth my investment of time.
They may be in my life to teach me something or I may be in theirs to teach them something. I may never know.

What I do know beyond a shadow of a doubt is tucked away in all those endless cups of coffee are hidden gems fashioned to walk this life arm-in-arm with me. Some people come for moments, some for seasons, but others remain for a lifetime. I've wasted far too much time mourning the distance between "kindred spirits" (Anne of Green Gables fan) rather than investing in new ones. I don't have to unload the old to make room for the new like I may have once errantly thought. God gives us what we need and he only gives good gifts.

bible app

Tell your story

"TELL YOUR STORY" has been the theme of this stage of my life. I am making progress, but I still fight it. It's not that I don't want to share, but it's the vulnerability and emotion that accompanies it that causes resistance inside me.

The Lord obviously knows I need to remember HIS faithfulness to be able to trust HIM more in the future. He also knows my story encourages and challenges others.

While I desire to be a beacon of HIS light in my strength and accomplishments, HE shines brightest in my weakness. I'm learning to take the opportunities to share what HE has done and what HE is doing in our lives because it's actually crazy amazing! I also want my girls to know this kind of stuff isn't normal... but God.

Psalm 145:4-7
"One generation commends your works to another;
they tell of your mighty acts.
They speak of the glorious splendor of your majesty—
and I will meditate on your wonderful works.[b]
They tell of the power of your awesome works—
and I will proclaim your great deeds.
They celebrate your abundant goodness
and joyfully sing of your righteousness."

New Resolutions?
So what does this year look like?

Wasting time...
Nice resolution, right?
I want to not only spend time with Jesus and human beings but to be frivolous and extravagant with it!

I know time with Jesus is never technically "wasted" but we know we waste time every day. So... If I'm going to waste time, I want to see what HE can do with it! I want to be frivolous in spending what I think is too much time with HIM and less time on what I think needs to happen.

I just finished the book Unseen by Sara Hagerty. I HIGHLY RECOMMEND IT! In it, she writes about the novel idea of wasting time with Jesus and it has stuck with me.

I often think the places I'm in are unproductive but am learning they may be just the opposite. They could be the greatest possible opportunity for the best return on my investment in "not busy" time. I can wrap myself in guilt from of all the activities I miss or cannot be a part of, or realize the value of the space I have to draw closer to God, family, and friends.

An unexpected benefit comes in being more purposeful in the places I chose to be rather than resenting all the obligatory places that seem to steal my time, leaving me exhausted, spent, and generally unhealthy. Hopefully, I'm also more present and pleasant when I am out. It makes me more of the person I desire to be rather than the crazy lady running around like a chicken with my head cut off? I'm not desperate for downtime or thrilled when practice is canceled because they're events we've intentionally chosen and look forward to.

If I'm going to waste time, it's going to be investing in God and people because in the end that is all that matters. Feel free to give it a try too! Let's waste time on the Lord and the people He puts in our lives!

Learning to Treasure

2017-12-12T08:09:00.002-06:00

Random moments... beautiful pictures... all reminders of the blessings in the pictures and behind the camera... learning to stop and treasure. photo credit A to V images

Treasuring or missing

I was pulling Abby's shirt over her head as I got her ready for school when she leaned in for an unprompted kiss. Because it doesn't happen very often it snapped me out of my autopilot mode, and a deep sense of gratitude washed over me.

Millie took my hand after finishing up breakfast and said, "Mom, I want to cuddle you on the couch."
Without a moment's hesitation, I stopped to Be still with my sweet baby.

I wonder if these were rare moments or if I usually miss them in the "busyness" of my days? How can I slow down enough to tuck these treasures into my heart like Mary (the mother of Jesus)?

"But Mary treasured up all these things and pondered them in her heart." Luke 2:19

I've read that line more than a dozen times, but it oddly stuck this time. I desperately want to "get" Christmas but have no idea how to set aside this season to focus on the Lord when the "holiday" keeps taking over? Where is the line between obligations that heap unnecessary burdens and embracing opportunities to show love and worship more fully? How do I add to my already full schedule and still treasure?

A dental appointment turned sweet on this day with some encouragement from people there... treasuring in the midst of hard moments too.

Tug of War

Whenever I don't know what to do next, the answer is always taking a step closer to HIM and listening. This season is an opportunity to practice hearing HIS voice among the blinking lights and myriad of more intense distractions.

It feels like a tug of war between the manger and Santa with my heart in the middle. I keep thinking it's my actions that matter, but it's actually a fight for my heart. It's not exactly a good versus evil routine. How much easier it would be if there were labeled boxes of "good things" to take out and another for "bad things" to put away, and voila' I'd do Christmas right! Unfortunately, taking Santa out of Christmas or pulling down the Christmas tree won't change my heart any more than having a bigger nativity in my yard or better bible verse on my Christmas card does. There is no simple formula for us to follow to set our hearts on Jesus during Christmas.

We want our actions to define our hearts when it's our hearts that define our actions. Sometimes I may need to physically take Santa down because he's clouding my view, but it's only a temporary fix for the symptom of an ill-focused heart. This is hard. So very, very hard because there is so much about Christmas that is worshipful and good; but it is not all beneficial.

My dear cousin spent Thanksgiving with us... A Reminder to "choose people" in life because they matter the most. She could've done a thousand other things for this holiday but instead chose to spend it with us... Learning to stop and treasure

Please give me the formula to follow

Once again I need to sit with open hands and open heart. In the quiet of the twinkling lights and turn my heart to the only one who can "order my days". I really want to love the people in my life well, but how can I do it without letting the holiday overshadow the hope of all mankind coming to provide a way to spend eternity with HIM? Just typing that sentence makes my struggle seem ridiculous! Seriously, how can I let Holiday trump Savior of the world?

But what does this look like practically?

It's not about giving less but giving better or even more. It's about stopping to see those around us and meeting needs of the heart rather than throwing money in the air hoping it falls where it should go. It's about smiling at the guy ringing the bell and letting my kids put money in the red bucket rather than avoiding eye contact and hurrying by.

This tree causes me to ponder and treasure because it was a gift from a fellow mom who had a child in the hospital during my time there with Millie. She lived locally and couldn't bear the thought of me not having a Christmas tree up that year. She walked in one day before Christmas with this for me... treasuring friends for seasons.

It's not about working in the soup kitchen Christmas Day versus buying gifts for every family member but choosing where I put my time and money. It's about knowing God is just as happy with me cuddling up on the couch reading advent stories to my girls as he is when I'm volunteering to wrap gifts for a cause.

Sometimes my heart may be stingy and I need to spend money on EVERYONE until I realize it's HIS money and not mine. At other times, money may be plentiful and HE may call me to give the gift of my time to an aging grandparent or lonely neighbor when it would be much easier to drop off a gift basket than to stay and visit or keep a regular invitation to do so.

It's just so much easier to follow a to-do list for "righteous living" than to follow a Savior with my heart every single day. She who is the most worn out after Christmas is not the most righteous. Martha busied herself doing good things while her sister, Mary, sat at Jesus' feet. Jesus said Mary chose better (Luke 10). The one who buys the most or best gifts doesn't win any more than the one who buys no gifts and gives all to charity. Foregoing all gift giving is no more righteous than going broke buying too much.

He doesn't intend for us to live by a book of laws and regulations with a step-by-step plan. The Bible continually moves our focus from what we do to why we do it (Matthew).

A heart change is necessary to treasure

I want to be like Mary this Christmas and treasure up all these things in my heart without a side of guilt from unreasonable expectations... mine and others.

My body may turn from side to side, but my heart needs to remain steady, anchored, and focused on the hope wrapped up in the baby lying in that manger. I need my heart to steer my body because my body cannot lead my heart.

We are all called to different places, physically and financially. Being faithful to those people, places, and activities is how each best answers the call of this season. I cannot look at what my neighbor is doing and compare because The Lord doesn't' lay out their calling for me to view and reproduce in my life. He has a unique path for me that I must follow.

I am simply to be faithful to hear HIS voice, do what HE says, and encourage others to do so as well. This will help me to let go of judging others and release me to only please "an audience of one" I should be focusing on.

Abby's love has never been cheap. We've waited many years to have her express it in any way. I thought I needed it to be verbal, but these moments still take my breath away... she loves her daddy... treasuring family love. photo credit A to V images

A prayer for us

May we all take a step closer to Jesus this Christmas to find HIS voice among the carols and the Greatest gift in the midst of the presents. May we set our eyes on HIM and tune our ears to hear the story HE's been weaving since the beginning of time. I will pray this prayer for you and appreciate if you'd do the same for me.

This moment in this place matters. Time spent with HIM is never wasted. Let's give it a try and waste time on Jesus this Christmas!

The miracle of 4

2017-11-21T04:40:00.001-06:00

photo credit: A to V images

The reality of this day four years ago has me up tonight with more feels than I can contain by sleep. There is so much beauty and struggle in the fading memory. Some days it barely feels real as I fight to remember and forget at the same time. My sanity thinks I needs to move on, but my soul longs to remember... to never forget.

When one serves a God of miracles through the unexplained and medicine there is a happy medium of definite answers we strive for. My mind wants to sort it all out, but my heart knows life doesn't fall into nice, neat categories of answers sometimes.

Another trip to the hospital with Abby less than two years ago reminded me of that time with my newborn in a helpless, painful way; yet brought to surface things I had tried hard to forget.

There is what feels like a fog left in the aftermath of traumatic experiences. I don't fully want to engage it, yet the efforts to bury it four years later prove a unrealistic vanity or futile survival techniques. My inability to wrap my hands around something tangible leaves me gasping for air and wondering how to process through a painful time my healthy mind is diabolically trying to suppress and resurface together.

There are snapshots scattered in my head like out of place pictures. I sort through them tonight wondering if the weighty memories will crush me or if my shoulders have strengthened to the task of remembering... healing... telling that story.

I didn't think there was a box in my mind for when something went so terribly wrong because I didn't think I could possibly prepare for any more nightmares. I wonder tonight if I had been wrong all those years ago and maybe we had been more prepared than we thought? What if the God in the quiet moments had been building us up for this... the fights beyond our sight? It's not like a shot of steroids that speeds up the process, but more of a quiet increase that can only happen from finding that safe fold between HIS arms through our other hard places?

We want to be ready for those moments that shake us to the core but can feel helpless to do so. Could we be gaining the tools through other weighty circumstances? In order to reach out to a God of provision, comfort, and hope we need to be familiar with trusting HIM in the smaller, seemingly less significant steps along our paths. He promises to be close to the brokenhearted (Matthew 5), but we have to let Him ooze into the crevices of belief and unbelief in those moments of our deepest needs when our faith is tested.

He is faithful to fill in the gaps when our strength fails and the door between this life and the next is open or paper thin. In those moments what we believe about Heaven matters more than what we believe about earth and life. Going there with a loved one changes us if we let it. We grow to understand the faith of those who have gone before us. We lean into that faith we cannot see and trust in the hope we have no frame of reference to fully understand. In the darkness we choose to trust a God we know by heart or we will crumble into tiny pieces across the floor of a waiting space, hoping there will be enough heart left to get us out.

I think there were moments four years ago when I crumbled under the weight of my expectations of God and His role in my life. I expected HIM to prevent any more struggle than "life with Abby" rather than adjusting the suit of armor HE'd been infusing into my veins to prepare me for this day because of that journey. HE knew there would be darker days ahead. A grade four brain bleed didn't take him by surprise, nor did it upset his world or his plans for me. Whether he ordained it or allowed it matters far less today than it did back then because the answer no longer possesses the weight of the diagnosis in comparison to the disaster relief that followed.

I count it all joy (James 1) easier today because I get to see the other side. In the healing, I feel the miraculous deeply. Perhaps because I also live the brokenness of growing under HIS answer of "no" to our prayers of healing for my firstborn.

I hate to admit it, but I wasn't sure HE was a God who could be trusted to bring good when Millie was undergoing brain surgery. He hadn't changed, but I had unintentionally adjusted my view of "The Healer" to accommodate the disappointment I had felt with a diagnosis of disability again. My faith was fragile and I wasn't sure I could handle another "no". It was easier not to ask or hope.

photo credit: A to V images

The further I get from that time, the easier it is to forget the reality that blood in the brain causes damage. My girl has brain damage but God in His sovereignty is allowing us to live a different story.

In honor of a God who chose healing, and a little girl who bears only a bump on her head in remembrance, would you share our story today? Not just cutting and pasting or posting on social media but with your voice. Please let us remember this snapshot in time with grateful hearts. May it serve to remind us HE still moves stones, He still works in the miraculous. This Thanksgiving I'm particularly thankful for friends who bravely entered our story in spite of the pain, so they can bear eyewitness and help us remember.

If you were a part of those dark days four years ago, don't forget. Help us tell it because you witnessed it, making it your story as well. May God be glorified today in the life of Millie Elizabeth, and may each who hear be strengthened in their journey to take a step closer to that same God who can be trusted in the good and the bad. He may not take us out of the struggle or prevent a life with pains, but he is faithful to bring us through and redeem it.

Though He doesn't guarantee to heal on this earth, stories like Millie's give us a glimpse into the beauty of eternity where he will wipe away every tear (Revelation 21:4). He will right all wrongs one day. Sometimes we get a win here on earth and sometimes our losses grow our longing for an ultimate win in eternity. Either way, there is hope in Christ. This is why we celebrate differently today. Thank you for celebrating her life with us!

photo credit: A to V images

Could weakness be the path to strength?

2017-11-10T10:29:00.001-06:00

A good reminder that I can't always see the big picture of what HE's doing...
From where I stood this was an awkward pose but I trusted the picture taker... amazing, right?
photo credit: AtoV Images

I was out for a walk with one of my friends, and the conversations went something like this...

Her: "How was leadership council with CBS this week?"
Me: (sigh... trying to find the words) "I shared my story this week."
Her: "That's great! How'd it go?"
Me: "I pretty much cried through most of it." I felt humiliated. I was debating on even telling her about it, but God in HIS sovereignty led her straight to the wound I'd been nursing for almost 24 hours now; so I pressed on. "I don't understand why the Lord keeps telling me to share my story when I'm going to be such a train wreck? My emotions take over and I miss a lot of what I'd wanted to say. Why can't HE just let me write about it where the tears fall in private and the message is more clear?"
Her: "Tears aren't bad. They make it real."
Me: "I just want to be able to share it coherently. I feel like I'm looking for pity and that's not the purpose. How can they see what the Lord has done and is doing when I'm just a puddle, squeaking words out? I felt like a pathetic mess."

Then she said something, I'm going to have to chew on awhile to decide if I can accept and own it or not? Was she making me feel better as friends do, or did she have a valid point? Hope started to spring up within me and soothe my exposed soul as soon as these words spilled out...
Her: "The emotion doesn't make you look weak but strong. You've been through hard things and you're still fighting for God's best. Do you listen to women tell hard stories and think they're pathetic?"
Me: "Hmmm... I guess not, but why do I feel so awful when they're my tears and not when they are someone else's?"

P-R-I-D-E?

Two steps forward
...one step back
...still moving forward

The thing is, my story isn't over. It's still hard. If I'm completely honest today was a struggle. This past month has been a battle. I've had many days where I've questioned where HE's got me and where HE's sending me. Am I supposed to be doing _________? Did I misread the call?

Nope.
I know I'm exactly where I'm supposed to be.
Just because it's turbulent doesn't mean it's wrong.

Just like the disciples in Matthew 8, The big waves scare me from remembering Jesus is on the ship. He's resting because HE knows who HE is. I fret because I see the storm rather than the storm maker. His dominion surpasses the storm and I know it in my head but my eyes betray me by seeing only what is in front of me rather than who is inside of me. He's waiting to calm the storm if I'd just believe and ask...

My story isn't a distant memory of a time long gone, but bits and pieces glued together making up who I am today. Separating the emotions would be like disconnecting my heart from the rest of my body and expecting to stay alive.

The stories throughout my lifetime, the roads I've taken, are grafted into who I am becoming. They're not events that happen outside my body but they penetrate and infuse who I will be tomorrow. They define my past, present, and the future me. If God's not surprised at where I've been or where I'm going, then HE's orchestrating who I am to be... even while the storm rages around me.

The emotions make it real. The rawness of the words forms pictures in my head taking me back to those hard places. If it's not an impossible story, I am big enough to put the pieces in play by myself, but when I share in my weakness, He's the only one left to receive the praise.

TRUTH: My giant of a God doesn't need me to make himself look good. My tears don't lessen HIM or what HE's doing but distinguish the pride threatening to tell my story in my strength.

This photoshoot is a story all on its own...
God sees me so differently than I see me. (story to come later)
photo credit: AtoV images

My job is to say "YES, LORD... to whatever you ask of me... anytime... anywhere," and let HIM decide how it comes out and how it is received.

Letting go... a bus story

2017-10-12T09:16:00.005-05:00

Abby walked away from me this morning, down the uneven brick pathway, across the yard, and climbed onto the bus... all by herself. I gave thumbs up to the bus driver, closed the front door and balled my eyes out.

My baby girl is sixteen. She isn't a baby, but it is so hard not to continue treating her like one. Most days I need Lucinda to remind me. She's unstable when she walks, especially on uneven surfaces. I wonder if she'll fall and if I'm doing the right thing? Is she ready? Do the bus drivers think I'm just being lazy? What about the string of cars behind the bus waiting on my dancing caterpillar to inch her way onto the bus?

I never really know how to respond to, "I don't know how you do it." In some stages of life, it has made me angry. Other times I feel grossly overpraised and embarrassed at the assumption of being impressive when I know the reality... most days I'm barely hanging on to the hands carrying me.

How do we do it?

We let go, and then...

We let go again... and again... and again.

We start letting go earlier with special needs kids. Somewhere in all the chaos of machines and tubes running everywhere we realize "this gig is above our pay grade". It is, beyond a doubt, entirely too much... physically, mentally and emotionally.

There is something innate that triggers the panic button inside of us during those days upon days in hospital rooms, but much unlike a fire alarm, it is eerily silent. It feels the same as the scene of a catastrophe, but people aren't running around and screaming like I think they should be to match the screams in my head. Instead, we sit beside a quiet bedside with little to no movements and find...

The strength to keep holding on, yet the capacity to let go. I don't know exactly how it is done, but we have the ability to grieve those moments while still maintaining hope they will pass or get better.

Friends, we don't walk away or cease fighting. It's not that kind of letting go. In fact, we do quite the opposite. We dig our heels in and hold on tighter, but our view from the bedside reminds us we have little control and we must let go. We cannot just enfold them in our arms shielding them from the pain or even tuck them in our arms and run away from it all.

We know we need the help of those in this place to be the hands and feet of Jesus because we don't have the tools to breathe the life into them like we want. But at some point, we have to go home. We must let go in order to come back.

And then when we leave the hospital it's like a victory march! We can do anything! We are empowered as a warrior after a hard-fought battle. But it doesn't take long for a special needs parent to realize another battlefront emerges.

"This too shall pass," my dad used to say.

"Something else will take its place," I learned all too quickly.

It took a few (probably more) years for me to understand what this means, but it looked more like learning to live in the tough instead of waiting for it to pass... because it might not. It may actually get worse. We have to learn how to find joy and hope outside of circumstances in order to be healthy and occupy a happy home rather than a padded room. This is a daily pursuit. I'm not there. Maybe never will be?

We have to let go when...

We send our kids off to "school" earlier than many of our peers for early intervention services;

We trust a perfect stranger to change diapers and feed long after their peers have mastered this skill and hope they incorporate love and hugs into their care;

We walk out of an operating room when the gas does its job, trusting the masked professionals to do theirs;

We interview caregivers to take our place so we can be wives and mother other children;

and when we put non-verbal kids on big yellow buses and wonder if we're doing the right thing.

We learn to let go long before our kids are "ready" because they may never be "ready" like our typical ones, but they still need as much independence as we can give them. But how?

We let go...

Over and over and over again... We let go.

When every fiber of my being wants to hang on and protect my girl with my physical body in the closest proximity to her as possible, I know I must let her stretch her wings... today that was down the brick pathway to the big yellow bus by herself.

How?

The same way we all do it... one step at a time.

I can step out of the hospital room for a few moments or go home for a shower,
put her hand into a paraprofessional's for an entire day, or
visit that group home one day because I know and can trust...

The eyes that watch her from above are capable.. far more than me.

The invisible hand that guides her... is kind and powerful.

The heart that formed her... finds her perfect, exactly the way she is.

And I can trust He has a good plan for her life and loves her more than I could possibly imagine.

Summering in MN 2017

2017-08-04T11:04:00.001-05:00

"Summering" in Minnesota sounds fancy doesn't it? The beauty and deception of social media....

We got to celebrate the adoption of two new ones to our family!!! (please don't tell my beautiful "T" that I posted this pic bc she looks nothing like herself, but this was the only pic I had) ***fun challenge: find MaryAlice (story for another day)

A few days into our trip to MN I legitimately questioned my sanity. There were tears. The calmer, contented Abby got lost somewhere between Florence and The Atlanta-Hartsfield airport. I figured the travel would be at the worst "one really bad day." Somehow I didn't factor in all the details of the five hour trip to Atlanta, overnight with Nanny and Papa, early morning to the airport, flying Southwest needing crucial airport accommodations (which didn't happen), and finally 2 1/2 hours from Minneapolis to Duluth... and eventually back again. OKAY, so it was two pretty rough days... maybe 4 (evidently, I'm still a bit in denial).

It was my choice to make. No one pressured or forced me to tackle a three week trip myself. I think somewhere deep down, I needed to just go home. A girl needs her safe place to fall, process, connect and be surrounded by her people.

It may have been a bonus...

To prove to myself (hopefully not as much others) I could take care of my own kids (pride always comes before a fall... I fell)
To see how much Abby remembered. She hadn't been "home" since her hospital stay which seemed to wipe out her recollections (Still unsure if she remembered and was happy or had no idea where she was and was frustrated).
For me and my girls to reconnect with old friends and family (SUCCESS!!! one out of three isn't bad)

How we do life isn't an accident that's happen to us... we have a choice. Relationships need time in order to grow. I want to live my life in "choose people" mode, so I must make the effort to invest in the people I care about. Sometimes this means setting aside simple things, but sometimes it's about the big gesture. A trip home is obviously not just a big selfless gesture, but enduring and remaining hopeful enough for the sake of time with people I care about is. (I was so caught up with trying to be sane that I took few pictures with all the friends I got to see... so sad).

at least we got some pics! Miss this gal!

Seriously spent most days with Danielle this may be the only pic we got :(

Having our kids reminded me to take some pics! Old friends are some of the best! Loved this gal since middle school!

New relationships are fun and fresh. I remember loving college because I could re-invent myself, but into my forties I don't really want to re-invent myself. I have worked hard to love those around me well, invest in people, and build a reputation worth keeping. At this age, I would really just like to bask in the aftermath of those hard fought battles and do easy every now and then with those I have built a shared history. I know "hard" isn't over or a thing of the past, but being closer to these people in this place seemed like it could be a refill for my soul.

I expected Abby to be tiring because her cares alone are just that, but I had hoped against all odds she'd be the calm sweeter variety we've been experiencing.
Not so much.

Pretty much a reflection of at least half our time in MN... on the deck while Abby played on the trampoline and the kids ran around the yard!!!

Safe places to fall

I recently realized I needed to take Advil before attending social gatherings. They are so taxing because I have to work hard at "friend-ing". There is so much history and people facts to remember, stories to share, and other's stuff to take in if I want to be a good friend. We all have so many layers of who we were that contribute to who we are. There is also the calculating what to share and how much is falling on safe and open ears? Not to mention my brain capacity must be declining or reaching capacity most days because I can easily forget stories or I cannot place the person it belongs to. Being in a good place without distraction is kind of a big deal when it comes to making friends, and it's not a life option right now.

These sweet buddies picked up where they left off without skipping a beat giving their mamas some soul sister time!

Finding "kindred spirits" (I'm back to Anne of Green Gables thanks to Netflix) means I weed through those who are nice and the ones who actually have time and space for new relationships. Then we start the process of finding those who are like-minded and we enjoy each other's brand of crazy.

Home in Florence hasn't been a safe place to fall. I've learned to do more crying alone with my God and found HE is always enough. Being back in MN I found that those relationships weren't crucial to my survival like I had mourned early on, but the one with my Heavenly Father is. Those people I was holding on to with expectations were instead gifts of the most precious category to feed my soul.

Aubrey and Millie... love these two little friends!

The Lord has surrounded me in my new home with some amazing women, whom I've grown to love and deeply respect. They are treasures of encouragement and have extended their hands and hearts in true friendship, but it takes TIME. We fight for our time together by giving each other a lot of grace and often going to great lengths to invest in each other.

Fragile masks

I'm not much for fake. I don't like shallow relationships, but the deep waters take infinite amounts of time and brain power to grow and maintain... I battle growing weary in the process. I lead with honesty and may err on the side of too open too often. I came to Florence at the lowest point in my life. I led with broken. The Lord has been putting the pieces back together in many beautiful, better ways, but easy hasn't been a part of that process. Grown, stretched, and refined are familiar terms in this season; but so are broken, worn, and weary.

I've often told others who struggle that it's okay to cry as long as you stop. I stopped the tears, but it was before the cleansing was finished. I've somehow learned to hold it together (other than some rogue moments) in fear of total breakdown in front of strangers who don't know me well enough to come back. I don't want to frighten people, but the tears seems to creep up on me at the least opportune times.

Sweet Solomon wasn't ready for all the love... being #10 means a lot of extra squeezes!!!

Brothers and sisters

Brothers and sisters by blood and those chosen by God, have been bonded together through time and often extreme fires. There is no replacement for TIME. It is a commodity we cannot collect quicker. We cannot infuse life experiences into an afternoon, but only with the passage of days.

I have never been more thankful for the homes I could walk into or the places I could go with the people who share my past, present and future. They remind me of God's faithfulness and His numerous blessings. I needed a safe place to fall during this trip and it was a gift to re-visit those whose love remained unchanged despite the miles of road between us.

The love here is like nothing I've ever seen from Abby!

There was something beautiful about all being in the same place at the same time. It didn't matter what we did or what went on around us. I took in the laughter along with the hard of less sleep and unsettled kids. We squeezed in many moments together. Most were amidst chaos but the few where Abby occupied herself in the car, bounced contentedly enclosed on the trampoline, or dancing to the breeze while walking were precious. There were indeed many walks, but I never walked alone.

Our Ethel... miss this lady!

Abby update

Abby was happy during the bulk of our trip. She wasn't mad or even upset most of the time, but she was significantly aggressive. She went back to the kind of pinching and pulling that produced blood, bruising and handfuls of hair. We had to hide everything that wasn't nailed down because it was dropped or tossed. I think she only ended up breaking a few things, but it wasn't from lack of effort. We spent a good part of every day taking her for walks or trouble shooting how to keep her in a defined space. Most cares often required two sets of hands but it wasn't an unfamiliar place. It just was not a place I would have brought her across the country by myself in.

There were still many opportunities to visit and reconnect with friends. Visits may have been shorter or canceled altogether, but I immensely enjoy the ones who could accommodate my limited time and circumstances. Like most of my life requires, my friends understand.

Grandma is amazing for helping MaryAlice pull off a tea party for the girls!

We'll have time

A few months ago something profound settled over me in a life giving realization. I looked at my girls and the sixteen years I had been a mom. It seemed like an eternity and a day all at the same time. I felt the years passing by at lightning speed. The desire to be present in my life and not miss the moments pushed through the "busy" and settled onto my heart.

These days pass by quickly. Some day I will be able to have coffee everyday with a friend, but I will miss the chaos of a full house. All the days I long for just a few moments of quiet will melt into days of longing for someone to step in and create noise.

Today, I will learn to take the short moments of solace amidst the crazy. I'll be content to build relationships at a snail's pace. I will take the trips back home even when it's hard. I will be all the more grateful for the safe places of shared history and the new ones that give time and space to forge new ones.

Not Awesome

2017-06-13T08:31:00.000-05:00

There are days I appreciate people who notice the struggle and encourage me,
but then there are days...

I JUST WANT TO BE NORMAL

I'd like...
to go unnoticed
to hop in the car without restraints
browse around the flowers without struggling to maneuver a wheelchair
constantly distracting a resistant child, and
not be like google maps to "recalculate" a less populated path.

Don't get me wrong, most days I fully appreciate those who...

ask questions and wait for an answer
allow me to arrive late or leave early without offense
come back after being on the receiving end of an emotional vomit
are present with a hug and a prayer because sometimes there are no answers

After sixteen years most days I don't mind being the ambassador for special needs. I can paste on a grin when I'm stared at from afar and be content to be present. But on other days, I beat myself up over the desperate longing to fade into the crowd, or even just stroll around without so many eyes.

Most days I don't even notice the incessant music from the same toys that have been playing for over a decade, yet others I'm cringing at the simple screeching and clicking noises wishing they'd go unnoticed. Those are the days where the pinching, hair pulling and digging get under my skin and I need to walk away.

Maybe its the anxiousness in my soul that needs to settle before I can engage on those days? Maybe the emotions of the moment need to be worked out in my own head before they can be released in an intelligible string of words? Maybe those are the days where there are too many words and they're all too clouded in the struggle? Or maybe I'm just human and some days I'm just weary. Maybe it's okay to not be awesome.

I know I'm not afraid of communicating the hard, but I think I need to work through to the hope before I can be honest with the pain.

I've been battling the reality of walking out hard places lately. I decided to take a trip to MN with all four girls by myself. I felt confident when I purchased the tickets, but packing bags and the reality of the five hour car ride before the plane ride was making me sick to my stomach. All the "what ifs" of caring for Abby without Andy or a caregiver started to seem more crazy than challenging the night before.

Abby hasn't exactly been herself after the hospital stay over a year ago. I had to get over the fact she didn't seem to recognized me when she woke up. Those weeks in the hospital had taken away our relationship in some form or fashion. I had to become her mom again and I think I've done that. I was oddly looking forward to solidifying "us" during this time. It was a really nice thought, but the reality of her care giving needs is definitely overwhelming.

Knowing I need the Lord desperately every single day doesn't mean I've figured out how to practically do it without angst. There seems to be a gap between the knowing and the doing. Being aware of my need just isn't enough. How can I keep moving forward when the blanket of fear starts to suffocate my courage? What does walking in faith look like? I think it should feel less frightening. I didn't think the pit in my stomach would be there if I fully trusted. Being a work in progress is often more humbling than I'd like. I want to measure success in concrete terms with definable edges, but that's not exactly how it goes.

I want a magic revelation of some undiscovered biblical truth to hit me over the head and take away the anxiousness creeping in my stomach, but ironically in the midst of a walk last week the truth settled in with a lot less fanfare then I had hoped for. Life is far more simple than I make it out to be.

Keep walking...

The choice is laid before us each day... hide in the closet or keep walking. I've tried the closet gig... not so great. Choosing to move forward can be hard but its definitely empowering when our faithful God carries us across the raging rivers unharmed to remind us who HE is. Refusing to be stalled because we trust the hand leading us gives us the courage to get out and do hard things again each day.

We keep living and answering the call on our lives makes the faith we read about come off the pages and live in the space between theory and reality. Trusting "He who began a good work will be faithful to complete it (Philippians 1:6)."

I make the choose to keep walking. Today it isn't easy. Tomorrow will be a new day...

Psalm 23

A psalm of David.

1 The Lord is my shepherd, I lack nothing.
2 He makes me lie down in green pastures,
he leads me beside quiet waters,
3 he refreshes my soul.
He guides me along the right paths
for his name’s sake.
4 Even though I walk
through the darkest valley,[a]
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.
5 You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
6 Surely your goodness and love will follow me
all the days of my life,
and I will dwell in the house of the Lord
forever.

Doing one thing will radically change your life

2017-05-01T09:17:00.003-05:00

Arriving in a new place with four kids, two with significant special needs (at that time) was like having the floor come out beneath me. It didn't take long to realize I couldn't physically, mentally or emotionally handle all I needed to do each day. I had two kids that required one-on-one care, two others who were mourning the loss of everything they've ever known (Belle was 6mo old when we moved to MN and MaryAlice was born there) and trying to figure out their place in this new world.

It was just too much.

I started by creeping in and out of despair. I fought it in the beginning with hope God's plan would magically appear and turn this impossible life into something possible. It didn't. I spent most days just surviving, going from one emergency task to another. There are some things that can be shelved for later, but eating, hygiene, clothing, clean-up, and sleep ruled my days.

Soon those first few weeks turned into months and months into years, and despair set in. All I could say to the Lord each day was, "This is too much." The worst part of that constant plea for help was the answer I kept getting. I assumed it was satan tormenting me or just the craziness in my head. The response was, "I know".

What the crap did He want me to do with that? I was drowning! It took me some time to realize it was HIS voice reassuring me I was being heard and HE was near.

Small moments of light broke through with the words I heard in CBS (Community Bible Study) and church. I needed someone to lift the spoon and put them in my heart because I lacked the strength to do it alone. Being on empty each day and living in despair zapped my ability to take in what I needed. The tyranny of the urgent screamed at me constantly and blindly functioning became my new normal.

"Trust the process," She said (lecture from Stewart our CBS leader). God has a plan. It may be dark today but He hasn't forgotten you.

This truth worked in me to keep me moving forward to hear God's word and choose to believe the best was yet to come. Nothing practically really changed in my life. Some days were less hard, but I continued to remain behind in everything I needed to do.

My house was never completely scrubbed or straightened,
The doctor's appointments were never caught up.
There was always school projects we worked on from behind.
Time spent with my kids was lacking.
Our marriage was taking a backseat because for the first time in our lives we couldn't physically go out.
I had few budding friendships in the fragile (needs tending) stage, but the best I had to offer was some moments of prayer and a short text every now and again.
I wasn't keeping up or doing anything in my life well. Mediocre or bad was the best I was giving my priorities. etc... etc... etc.

My attitude was unstable and volatile. I was unhappy most of the time, and doing my best to fake it around my kids so they didn't feel responsible for my grief.

One day that small voice turned from "I know" to "Get Healthy".

I initially thought that assignment was more ridiculous than the first. But after I chewed on it for a few months, I realized no one was going to rescue me. Feeling sorry for myself hadn't gotten me anywhere. Despair was not my friend. Getting healthy actually started to make more sense because I needed to make some changes to my life. I needed to figure out what kind of life I wanted to live and go after it.

The next three words changed my life and I promise will change yours dramatically and permanently if you start to do it as well. They are a game changer...

"ORDER YOUR DAY"

I needed to ask the Lord what needed to be on the top of my list each day instead of a "willy-nilly" or "tyranny of the urgent" approach. It may seem insignificant because it's simple, but it actually has taken some time to figure out how to do it right. It's not physically hard or necessarily taxing, but there are three main components to do it right.

First, I have to quiet my soul. This quest always starts with my head. I have to carve out the minutes at the start of my day and learn to hear the voice of the Lord. I set my timer to concentrate that period of time just on listening. I hate to admit I initially spent most of that time clearing my mind of all I need to do in order to make space to hear. I then put all the "necessaries" on the back burner and place quieting my soul front and center. I know for me it will always be a challenge to set aside the chaos that screams for my attention and choose to listen, but the benefits outweigh the struggle.
Secondly, I have to listen to the right voices. The voice of being overwhelmed and living in despair is never of God. Hope, love, and encouragement are. This includes an increase in quiet listening before I ever open my devotions or make requests. The "Martha" in me finds "doing" much easier than listening, but taking in the word of God and doing nothing with it does not reflect God's intention for HIS word. His application in my life happens in the quiet when the words come alive to produce the fruit HE intends and I so desire.
Thirdly, being content doing the small things. I have the choice each day to act on what I hear or not. I have to choose not to worry about all that goes beyond my call for that day. Some days I'm called to do laundry. Other days I'm called to enjoy coffee with a friend. I not only need to hear the right voice but act and live contentedly with it. It frees me up to be present for the tasks I have that day, and not to worry about the laundry list of those that must wait. I think I know what is best for me, but I'm often wrong (Proverbs 16:25). I may opt for "good" if left to my own priorities, but why not trade up for "His best"?

The only non-negotiable of my day is spending time with the Lord

My days are not less full than they were a year ago, but my contentment in where I am is growing. He has refocused my eyes on what I am called to. My priorities are clearer. I'm okay with some days being called to tackle the fourteen loads of laundry; whereas, it would've seemed like a waste of a day before. I can be fully present while sitting on the couch and reading books to Millie, coloring with MaryAlice, watching a show with Belle, or letting Abby cuddle on my lap until I can't feel my legs. Because I have kids, I am called to be a mom. I can freely be who I am called to be in each moment without any guilt because I am hearing and answering HIS call on my life.

I can wholeheartedly promise the simple step of seeking the Lord to order your day will change your life because it is HIS promise, not mine...

Jeremiah 29:13
"You will seek me and find me when you seek me with all your heart."(NIV)

The Haircut

2017-04-16T16:09:00.001-05:00

My vanity took a hit this week. I knew Abby's hair needed to be cut off, but my "Beautiful Blondie" (Uncle Ben's term of endearment for his girl) had the most beautiful locks I'd ever seen. It had become a total mess most days because she was literally pulling it out of her head. We tried to trim it up in case she was pulling because it was heavy, but it seems that she may simply like the feel of pulling it.

I've seriously been disturbed all week. I couldn't even post a single picture of it on Facebook. I was a little embarrassed because it seems trivial in the scheme of life because in and of itself, it totally is. With all the major life things that she deals with, it's really no big deal. Besides, she could care less. She was even a rock star getting it cut!

Abby and her sweet stylist

Sometimes we need to refrain from making a big deal out of everything.
Sometimes it's okay to realize the little things are bigger and more important than we think.

Don't get me wrong, a haircut isn't a big thing.

Abby's hair represented more to me than just her lovely locks. It was one of the only things about her that was "normal". It wasn't just typical but it was enviable. Her thick, naturally perfect shade of blonde, hair was lovely.

Still girly... not a fella :)

I like to fix hair. Some of you may doubt this if you haven't been aboard our ship for very long, but before she pulled everything out it was often braided with cute hair clips and fun bows.

I also have convinced myself her well kept hair reflected a well cared for child. I used to be so critical of parents whose kids were a mess.
I'm not anymore. ( If I could go back and apologize to all the parents I judged so harshly when I was a teacher... UGH!)
I too am just glad when we all make it to church without a complete breakdown from anyone (especially me). I choose to let the "cool points" drip off when my kids hair is a mess, completely undone or they made a last minute shoe change to rain boots and sneak out of the house before I intervene. I'm still pretty adept at convincing myself I have points to spare.

Abby doesn't feel if her clothes are twisted or her pants have fallen to her knees (it seriously happens). She doesn't care if she's dropped food or if she's drooling down her front. She will walk around in a wet or even a dirty diaper without skipping a beat. She thinks nothing of smearing diaper contents and smelling like a trash can no matter how long I soak her in the bath to remove the odor. She eats trash if it's left out or rocks if they're within reach.
It's Abby... It's okay

Dad declared she has the best hair ever!

I adore this crazy girl. From the way she looks at me to the way she pulls me to her room to cuddle. She lights up my world!

I walked through the mall with her yesterday in an attempt to buy her new clothes because she's grown out of hers and she's so hard to dress these days. I bought her some new jeans a couple weeks ago, but after three separate trips to the mall for exchanges I knew she needed to start trying things on before I purchased... YIKES!

It wasn't easy, but a good reminder how much Abby affects people. No one really would've noticed me if she had not been there. She's like a neon sign blinking "LOOK AT ME" wherever we go. It doesn't bother me as much as it used to because I see the good stares along with the odd ones.

When we go out with her, we always have to factor in the time we will spend with at least one random person who will come up to Abby and interact with our family because of her. Which is a GREAT thing!

She can change someone's day or life in those moments.

Abby's hair, all nice and cute, represented a child well cared for to me. My pride took the hit because now she looks a bit more like the high maintenance special needs child who requires easy to deal with hair.

She's seriously this sweet these days... kissing Sissy!

It felt like a loss.

A loss of something that I had defined her by, and a loss for me... points docked on my motherhood. I felt I had let her down or that I was a loser mom because her hair wasn't the way I envisioned it.

...once again, it's not about me.

Today, I let go of the pressure to care if people judge me based on how my special needs daughter dresses (a constant battle) or how her hair is styled.

Like most battles... It is probably between my ears rather than a fact living in reality. It's also likely low on the totem pole of things anyone else thinks about, especially those whose opinions matter most to me.

Summer reading

2017-03-23T09:32:00.000-05:00

Add The Variable Life to your summer reading list!

It's time to start collecting your summer reading books! I don't know about you, but I'm always a bit torn between a novel and an "educational" book. I want to have a book that allows a brief escape, but I'd really like to learn something or at least be inspired at the same time. This book fits the bill!

A new friend of mine, John Weirick, just wrote a book! I was excited to read it because he is on staff at my church and we share a Minnesota connection. Can you believe he graduated from the same college as my little brother?

This book is great for young people searching for meaning in life, but also older ones who may be at a crossroads trying to figure out what they're supposed to be doing. We can all relate to John's journey as he shows us how life is just a series of choices. We answer God's call on our lives in the context of these choices or we miss out on a lot of life changing opportunities.

As a special needs mom, I was surprised how much I related to this story of embracing change even when it's scary. I appreciated the raw honesty John offers in openly sharing his weaknesses and struggle to step out of his comfort zone and embrace the life where God was leading him.

If you want a book with an engaging story that will inspire and challenge how you do life, this is a really good book from a fellow expatriate living in the South!

Building walls

2017-03-02T09:51:00.002-06:00

In my own personal experience, I've found the first ones to reach out to help... are those who can't. They are the ones who are too far away or obviously unable in some way. I'd like to just point a finger in my cynicism and condemn "others", but I have to be honest and admit I've even found myself doing this too. It's easy to say, "I wish I could help," or "I'd be there for you if I was closer," but would I really be? Am I the first one racing to the doorstep when I actually am in a place to help? I'd like to say "yes," but reality is closer to... sometimes. I could do better.

Refugees... a crisis of words?

This thought of empty words seems to be stuck at the front of my mind lately as I see so many people posting about the "refugees" stuck in airports or awful camps around the world. All the finger pointing about loving through government decree is on the surface as a loving plea. We must start by owning our own individual action plan as well. Are we just posting on FB about making "tables longer instead of our fences higher" have or are actually welcoming refugees or anyone for that matter into our homes? Do we legitimately love on anyone who is different? Are they projects or do we pursue lifelong connections?

Do we hear a foreign accent and find ourselves drawn to the person/family or is our knee jerk reaction to be polite and get away as fast as possible? Do we invite them to our kids' birthday parties and share holidays with their families? Do we take the table next to them and engage them in a conversation at McDonald's or choose a seat across the room and join the crowds to stare?

We are a sight!

Stared at community

Being a reluctant card carrier of the "glass house" community, it's not a great position to hold. We're not often engaged or invited to the table perhaps because most people fear what they don't know. I too, have bombed with my words to families and acted incredibly politically incorrect at times, but the only way to do better and learn is to keep trying. "I don't know what to say," is a legit challenge but not an excuse. We can all affirm it is hard to engage someone who is so decidedly different from us, but we must agree it shouldn't paralyze us from loving altogether.

There are too many who are hurting and lost to let that be our "get out of engaging" card. There are less "in your face" approaches to reaching out. We cannot live in our safety bubbles with our two comfortable friends throwing rocks "at everyone else" for not loving, when we refuse to even say hello to the throngs of new, different or hurting people we pass at church or on the street.

With our moves across this country, we've been strangers in a new land (on an obviously smaller scale) and have at times felt the lack of love as an outsider. There have been times where MN and SC seem like different countries. It's hard, friends, not to be disappointed with those around us who are taking up the torch for immigrants, but wouldn't cross the street to offer a handshake or even a smile.

Refugees... open hearts and homes?

Our country is a place of vast immigration. We have people from all parts of the world within our borders right now. I'm only a few generations away from my ancestors who immigrated to this country. Of those of us who are burdened over the current situation, how many legitimate friends do we have of different ethnicities? Are we involved with the current settlements of refugee populations? How about adopted or foster kids who are displaced from their homes? Disabled friends? Do our facebook feeds, churches, or family gatherings reflect the melting pot we live in or a family reunion?

It's easier to point the finger at others for not loving, but what are we doing with current "outsiders"? Do we see a women wearing a hijab and invite her and her kids into our homes or even to church? At the very least do we extend a warm smile or exchange pleasantries at the grocery store? Are we chomping at the bit to share a meal with them? Do we engage in conversation and offer assistance as we would anyone else who was new to our area?

Building walls

Please, dear friends, regardless of where you stand with building a wall or allowing refugees please note this isn't new. There have been bans from specific people groups throughout history. The last one was as close as the last presidency. There have been walls built and blessed by God (Nehemiah) and there have been walls felled by the same God (Soviet Union).

He is sovereign in both.

He is also above both.

Any government isn't able to thwart any plans of God.

We should be loving the people within our walls well and reaching out to those outside our walls. There's nothing wrong with letting your voice be heard among friends or even social media in regards to public policy, but we must make sure that voice has hands and feet as well. We must first be the difference we're asking others to be.

May the wall be a symbol in our hearts for us to be a bridge for those who are different and isolated in our communities. May we not just post pictures of bridges, but fail to create and cross them ourselves. As Christ followers we are called to fight and defend those who are abused and oppressed near and far. Don't stop fighting for the majority of refugees who really just want to live in their homelands free of war and violence. This is a multifaceted issue. May we see the bigger picture and make a difference with our own actions toward our neighbors here rather than just words for those afar.

Call to Action

Reach out to someone from another country today. They are all around. My family is in MN and we feel the loss of family around, but how much more for those whose family is too far to visit or spend holidays with. When we start looking is often when we start seeing.
Think beyond immigrants to those who are just lonely, lost and marginalized in our society and reach out to them as well. (special needs families are among this group).
Make a point to smile bigger, engage in a conversation, or show an act of kindness to All those around you. Make your mission to break stereotypes today.

Disability in the church: Givers or Takers?

2017-01-31T07:01:00.001-06:00

“I’ve even been guilty of seeing my girl as burden in the church to be accommodated rather than a gift to be treasured.”

Disabled… differently abled… handicapped… special needs…

Even though I have a child that fits these terms and I am pretty well versed in the etiquette of this community, I often feel awkward and confused with how to deal with other families in the disabled community. Because we are all unique, there isn’t a perfect formula for navigating this population.

Some may avoid people with disabilities altogether out of the fear of saying or doing something offensive. Others may be oblivious to their existence in the church if their lives haven’t been touched by it yet. Yet some may see a lowered capacity and even wonder what’s the point of teaching them in the church?

Whatever camp we fall into, it’s always helpful to lead with what God says.

What does God say about disability

In John 9:2 the disciples inquire who had sinned to cause the man to be born blind, and Jesus responded that neither had sinned, but he was born that way to glorify God. Therefore, we can conclude disability is in our world to glorify God, just like the rest of us.

2 Samuel 9 shows King David honoring his dear friend, Jonathan, by giving his lame son, Mephibosheth, a place of honor at his table. Here we can deduce those with disabilities are equal in the sight of God and welcome at His Table.

Although the previous verses are nice and helpful to specifically call out purpose in disability, let’s go a step further and consider the rest of the Bible in regards to how God’s people should treat those who are “differently abled” in the church. I Corinthians 12 talks about the body of Christ having many parts, but ALL are necessary and needed. What if all the promises from in the Bible were indeed for ALL, including the handicapped?

Let’s dare to go a step further and propose disability doesn’t negate his promises, but could actually expand them? Could an area of apparent weakness actually be a strength? Evidently, Paul thought so as he wrote In 2 Corinthians 12:9 that he rejoiced in his weaknesses because through his weaknesses God’s strength can be more greatly revealed.

Let’s consider the possibility of the nonverbal boy rocking in the corner, the deaf person in need of an interpreter, and the blind lady tapping her white cane in the hallway to not only be vital to the body of Christ but rather a huge benefit to the body.

Givers not takers

I’ve even been guilty of thinking too small in regards to disability in the church. I’ve thought of my girl as maybe even a burden in the church to be accommodated rather than a gift to be treasured.

I’ve been around long enough to boldly say, “People with disabilities are givers not takers.” Disability doesn’t erase or negate a purposeful life serving Christ, but rather ignite a greater story to tell.

People with special needs can spend a great deal of their lives “fighting” just to live and access the world most of us take for granted. Participating in worship and attending services can often feel just as burdensome and often not worth the effort in the one place that should be inherently loving, patient and welcoming.

The church seems to feel proud of themselves for their accommodations rather than embarrassed for the lack of forethought in simple areas such as steep, inaccessible stairs just to attend a service. When at least fourteen percent of South Carolinians fit the term disabled, it is a large chunk of people to not prepare in advance for their attendance. There are no backdoor accesses for the poor or lame in God’s kingdom!

What if the church expanded the narrative from “A group to be served” to “A prize to be won over”? What kind of church would we see if we saw differences as assets rather than liabilities? What if we used a bit more of our time helping those with unique challenges think outside our traditional box of doing church and ministry to find their unique niches and areas of gifting to be a working contributor?

SpringZone and perfection

Those who volunteer in SpringZone, the special needs ministry at NewSpring, know a secret that many others don’t. These kids are all not only vital parts of the body of Christ, they are perfection. Their beauty and perfection is seen when it reflects onto all those around them. The beauty of all our lives can only be fully measured by how we affect the people around us and disability is no exception.

Our Abby displays all of God’s perfection in being exactly who God created her to be. She glorifies Him with her mere existence. We have to willingly lay down our lives and choose to serve God each day; whereas, she can touch lives by simply entering a room.

Her perfection might not be the obvious beauty we’ve all grown accustomed to admiring, but if we will take the time to lift the mask of apparent physical or mental deficits and/or deformities we will find the treasure hidden beneath. Revealing more exquisite and unique perfection than we may have ever seen before. Her perfection can best be seen in how He uses her to perfect us.

The challenge

Dear Friends, God calls all of us to the table! How different would our churches look if we valued all as equal at the feet of Christ? In the Creator’s hand, all are beautiful, perfect and a vital part of His kingdom. Let’s throw open the doors and welcome the abundance of depth beneath the vale of disability… differently abled… handicapped… special needs to find some of the church’s greatest assets revealed.

What I Love About you at Sweet 16

2017-01-25T07:05:00.002-06:00

16

I always tell other parents to let yourself mourn the loss of milestones or things that hurt. We like to say, "It's okay to cry as long as you stop." I want to give others room to mourn, yet arrogantly I expect more for myself. I've been at this longer than most of my people and feel like I should be better at it by now. In some ways, we've grown to meet new challenges, but they're by no means easier and sometimes more difficult.

Each year brings new accomplishments and new losses. I get to follow the kids she was in preschool with and sixteen is a hard one. It is one of significant independence and our comparison is significant dependence. The gap widens each year and the future feels more fixed than ever before.

The hug

This year Abby has perfected the hug. She will take her own hands and put them on our shoulders for a real hug. It's one of my favorite things in life. There's nothing more precious than returned affection.

What I love about you at 16...

My list is shorter but bigger this year because not much as changed in who Abby is since the 15 post. This year may not have had a lot of growth or change to show in Abby, but it marks some monumental changes in us. Who we are because of our Abby is what we celebrate today. Her little life has so greatly impacted the people we are today, and by the grace of God who we are becoming. The highlight of this milestone of sixteen years today infuses so much purpose in one life. Oh! How I adore this girl's life!

Seven lessons we've learned because we get to be Abby's parents

1. God is Able. He continues to turn our "Darkness into Dancing"... After 16 years, we've learned there are so many hard days, but God... Today we celebrate Abby because God is able to do immeasurably more than we ever could've asked or imagined (Eph.3:20).

2. LOVE without expectation of anything in return. We give our hearts away knowing they'll be broken over and over again. Knowing if we do this LOVE thing right, it will hurt. It will be a lot of ugly cries. We choose to Let our souls grow through the loss instead of growing hardened and bitter with life. We make this choice because we know what we're called to. Abby is teaching us to love fiercely through the pain.

All of Me by Matt Hammitt

3. It can be well with my soul. No matter how crazy life gets around us, it can be well with my soul. The crazy is big, folks. It even surprises us at times. Our pastor asked last Sunday what was the one thing if lost that would wreck us? Immediately I knew the answer was Jesus, only Jesus. I couldn't say that even a year ago, but today, by the grace of God, it is my truth.

It Is Well by Bethel Music and KristeneDiMarco

4. Every line of our story has purpose. Even when the struggle seems worthless, it's all part of a bigger story. Nothing is wasted.

Every Line by Newspring Worship

5. Who we are is less important that who we're becoming. I spend too much time worrying about the future because I live too close to the scary of the past. After moving I've wanted to get back to who I was, but I realize now it doesn't matter. We can't go back but we can #STARTOVER. We have to keep getting up and moving forward. Each stage is a new normal to be discovered rather than another season to mourn.

Tell Your Heart to Beat Again by Danny Gokey

6. When I don't know what to do, I trust. I don't know what our tomorrows will be, but I chose to trust. I will cry, I might scream, but I trust in a GOOD GOD who is sovereign and working things out for my good regardless how I feel in the moments.

Trust in You by Lauren Daigle

7. Broken Together... With each passing day we're figuring out how to be live in the broken... beautifully broken. "Marriage is one of God's best refining tools" (Beth Moore) and "Marriage is evidence to the world the gospel works" (Clayton King). We aim to submit to HIS work in us to show our girls, family, friends, and a watching world how to be broken and stay together. It's a fight, but by the grace of God "We press on to the goal to which God has called..." (Philippians 4:13)

Broken Together by Casting Crowns

***If you could share how you are different because of Abby and/or her family in your life, it would greatly bless us...

surgery update

2017-01-10T07:37:00.001-06:00

Abby didn't appreciate the chaos of opening gifts this year.
She came into the room, picked up her favorite gift and walked out!

Fifteen, almost sixteen years into this disability thing and I'm discovering something new...
profound peace in the midst of the unknown. HE usually... eventually leads me there. Often it includes kicking and screaming after every attempt to figure it out on my own before I hand it over as "above my pay grade."
but this time I sat in the doctor's office to a new sensation...

Skipped the troubleshooting
jumped right through the tears
admitted I have no answers
laid open my hands with nothing to offer
felt the gravity of my child once again being more than I can handle
Was reminded HE loves her more than I could ever imagine
HE can care for her better than I can
I'm a simple, inadequate vessel
...totally unsure what that means or what it looks like today
Made the choice to trust while my body and emotions followed into rank behind my will

Every step of this journey beckons me to take a step closer to the one who has all the pieces of the puzzle and is fitting them together without any help from me. I have the option to join HIM in this work or continue to fight against what HE's doing.

When it's hard I want to get back to easy
When it's easy I want to cram as much into that space to maximize wholeness

So many demands I'm not entitled to

He never promised me answers, but HE did promise he'd walk or carry me in this path.
My "rights" as HIS are to be;

held
carried

belong

peaceful

fruitful

gifted

joyful

hopeful

When I'm at the end of ME...
I give in and look to HE

Our visit with Abby's urologist marked one of the first times in my life that I actually appreciated name dropping. I'm not easily impressed, moved or in awe of people in general. I'm not the star struck kind of person, but this day I liked the fact that our new doctor appeared to be connected to the best in his field. He had an audience with some of the best of the best in pediatric urology and the consensus was...

Good news

The urethral diverticula might not affect her. It may not have caused UTIs and it may not cause them in the future. She may get them because she is incontinent and/or doesn't drink enough. There are a lot more questions without answers and uncertainties that beckon us to wait.

Bad news

We really don't know what to do. There aren't doctors who do what Abby needs. I'm sure there are some who could, but it isn't a common thing or even an uncommon occurrence. It's really unheard of. They could come up with a plan and give it a go, but they're really not sure it wouldn't cause other problems in the attempt of performing such a surgery on such a little gal or if it would take care of the UTI problem.

Boston would really be the only place to go right now. If it becomes apparent this must be taken care of than we will need to go to Boston.

Good and Bad

Wait and see... I'm usually more of a bulldog kind of person. If there's a problem, let's solve it. This isn't that kind of thing. We could push it and go for surgery, but it makes more sense to make sure this is causing her problems before we go to such lengths to attempt a fix.

I don't like feeling like a ticking time bomb, but if I'm honest this is what life is all about. None of us are promised tomorrow. This is much like most of our lives...
Take a step closer and trust in WHO I know rather than WHAT I know

Big breath

We've had a lovely, quiet Christmas break. We stayed home as a family this year. It was different but nice. Abby has been great at home! She sat on my lap with MaryAlice next to me and the puppy for at least an hour as we watched a Christmas movie. This is a Christmas miracle! Abby never sits for extended periods of time unless she's in the mood for watching one of her shows or I'm singing her songs.

She's even started hugging everyone. She puts her hands on the recipients shoulders and leans in for a kiss and hug. We've been lifting her arms and saying "hug" for so I long I automatically cue her arms and almost didn't realize she would do it on her own...

Sweet blessings :)

How to interact with Abby

2016-12-05T08:50:00.001-06:00

How to Interact with Abby

We got a dog... Abby's not impressed

I was doing my usual distract and redirect with Abby during a visit with a friend when she asked why I kept moving Abby away from her. I was a little mortified because I hadn't even realized I was doing it. It's second nature to protect our guests, I suppose I assume the best way to keep friends is to avoid hurting them?

I know Abby's not trying to be mean. I know she's trying to interact, but somehow I've forgotten the importance of teaching others what to do in Abby's world. Somewhere in the course of the past few years I guess I've grown weary in teaching... or people aren't as open to a big special needs child who may lead with what seems like aggression?

I don't want to think through the reality of an aging child who is no longer the tiny person everyone flocked to. Things change with her growing up physically, and my feelings are more fragile on this topic than I'd like to admit. The crowd that welcomes her has dwindled. I haven't let my heart deal with the fact that these people didn't grow up with my sweet angel. They haven't watched our journey for fifteen years. They're not vested in us... yet. Walking into a new community with a small special needs child may require a lot of work, but a big kid with the same needs isn't embraced in the same way.

Maybe I've lacked the patience and energy to re-educate our new community? It is odd and disheartening when we're at a gathering and the majority of those in attendance seem to act as if she doesn't exist. I've gotten used to the idea that some won't make an effort, but I realize I may have grown too pessimistic in assuming that encompasses most. It's difficult to guard my heart because I could grow bitter at those who still ignore Abby or us in their discomfort or indifference. When I tell people and they still ignore, that's even worse.

**Disclaimer: If you continue reading this, you're are now responsible to use this new knowledge...

FRIES... one of Abby's favorite things!

The Stats

Abby is fifteen but developmentally like a two year old. She is non-verbal but understands more than we think. Much like any toddler, she really doesn't like to be ignored. She may grab at those who pass by because she's trying to get their attention! I always think of the book Horton Hears a Who to describe this. Grabbing is Abby's way of screaming, "I am here! I am here! I am here!"

The awkward part about realizing she wants to interact and stopping to try is the fact she processes your words significantly slower than most people. You may say, "Hello!" and reach for her hand to shake it or give a "high five," but when you only wait a few seconds for her to respond it's just not enough. Be patient because she'll often raise her hand for a high five up to a minute after it's offered. I heard this delay best described in terms of mental pathways to process information. Typical people have superhighways with waves zooming around delivering messages to and from the brain in fractions of seconds. For instance, when I decide to turn on a light in a room, it takes a fraction of a second for my brain to send the message to my hand to do it. Abby operates more in deer paths through the woods. Hers are slow moving rocky paths or undecipherable altogether where information gets stuck. This is also why interactions with too many words often get lost in those paths because she lacks the capacity to take it in. It's like loading a classroom of children into a two person plane. Simple one or two step interactions are more likely to register; although, they may be lost too. Think of what you would say and how you would say it to a toddler (minus the baby talk... that drives us crazy). I know it's hard to see a teenager and think toddler, but it is the best way.

What to do with the digging... and blood

The next best thing to know about interacting with Abby is her sensory system is screwed up. She is sensory seeking and sensory defensive. This means that she seeks input (touch), but can recoil at it as well. This is what makes interacting with her confusing. She is reaching out to you with her hands, but once she grasps yours she may start digging her nails into you drawing blood. Try to take her hand in yours and you'll see the recoil.

When she was little we tried to "pop her hand" (like you would with a little one going toward an outlet) once or twice to correct aggressive behaviors before we realized she didn't feel a thing and that wouldn't work. We don't think it is fine that she draws blood or pulls your child's hair, but we haven't found anything that seems to deter it. We have seen every specialist in the book about giving her other sensory input but it boils down to the fact we don't have a discipline strategy for a two year old. As annoyed as you may be to have her dig her nails into your hand or pull your hair, imagine living in the same house with it for over a decade? She just wants attention.

We've found the following 3 things to be the best way to deal with this behavior:

Know she's probably not angry or upset with you
She really, really wants to interact and will be puzzled if you scream and run away. We've tried a big negative reaction and she actually likes that response. Like Pavlov's dog, it only trains her to do it more so she can get that kind of amusing reaction. Telling her it hurts or hurts your feelings is just a waste of words and annoying for us to hear. Announcing your displeasure is equally annoying to the parents and all those around who will have to hear it over and over and over again at any gathering.
Become familiar with the release switch... her pinky. Gently pull her pinky away from your hand first and the rest will follow.

Walk away

She is seeking input inappropriately. The best natural discipline is to take that away by removing yourself from her reach. She's not fast but she is persistent. She may follow you around seeking what she wants. It's usually because she likes you rather than because she's eerily trying to hurt you. The important thing is to come back to her after a minute or so. I know it feels so odd to see her smiling as she inflicts pain. Understand this is because she is happy about the interaction rather than rejoicing in your suffering. This has been a process for her family to fully grasp. She has three younger sisters.

She is seeking input and touch from you, so give it to her in a different way

She likes BIG hugs. I know this will seem contradictory for those of you who have hugged her only to have her push you away. You only would have to see her face at the initial squeeze to know she desires it. Because she lives in a world of unusual and complex, the hug gets to be too much and her body rejects it. Temple Grandin (grown lady with autism & spokesperson) explains it best by saying it's a weird dichotomy of feelings and emotions. She wants it and she can't handle it all at the same time. She actually built a "hugging machine" to get the input she needed. Therefore, we just envelope our little lady in big bear hugs and then let her be free when she pushes us away without letting it hurt our feelings.

We will also give her deep pressure message on other parts of her body. I'll rub her head, arms, legs or back when she is seeking my hands. This may decrease her insistence on obtaining your hand. Foot massage is also a great input for those with her for longer periods of time. The good news is she is sometimes just hand holding for moments now, so don't feel like you must avoid her hands at all costs.

Abby love... nothing like it :)

"NO"

We do tell Abby "no," but it's more for the benefit of little ones who may be watching or get caught in the pinch/pull. While Abby doesn't comprehend that she can inflict pain, other little ones don't either, and we don't want them to think it's okay for Abby to hurt them. It only potentially adds to the fear of our big girl hurting them if we don't step in to protect them. We want them to seek her out and find ways to interact rather than avoid or be scared of her. Think about parents who correct their children and pull them away when they come up and ask questions. It breaks my heart because it teaches the child to avoid or, worse yet, fear Abby and kids like her. I'd much prefer them allow kids ask questions.

Part of our world

One of our greatest desires as a family is for Abby to be a part of our world. This may seem simple to you, but it's so not an easy task. It's WAY easier to just leave her home with a caregiver. Although we may need to do this at times, it would be a much more accurate reflection of our family to have Abby with us as much as possible. With that said, it requires our people getting used to Abby and learning to interact with her. It is good for society as well. The trend in our world is to remove kids like Abby from institutions and have them in our communities, but this is tricky when people don't learn how to interact with those who are different from them. If you don't see people in need, you may be a different kind of selfish and not be looking. We often fear what we don't know and it's easier not to try than to do it wrong. I'm begging you not only for our sake, but for others like us to open your eyes and do it wrong... until you learn to do it right.

Ambassadors for disability

One of the best things about our family's role as ambassadors for disability is that Abby doesn't understand. You may freely ask me anything without offending her. You must be careful with other kids because they may understand more than they can communicate and talking about a child in front of them can really be hurtful. Abby won't be offended or deterred if you are awkward or do it wrong. She is really forgiving (maybe forgetful) and will gladly be the guinea pig to practice interacting with different kids like her.

Don't get me wrong, there are plenty of days where we tire of educating everyone. All too often we lack the capacity to take on another group and just stay home. I admit I did this yesterday. I skipped a Christmas party because I didn't want to educate. I am more tired of this now that I'm older. It's also exhausting to start over with this task in a new community that knows little of our girl, but it is also part of her greater purpose in all of our lives. You can pray for my heart in this. It's more about me or us than her these days. We don't take her because I'm too tired to teach you how to interact, and my head has a hard time with so many who simply seem to be choosing not to. Ignoring Abby grieves me (us).

I'm not hyper politically correct because Abby doesn't understand, and I choose grace because the rules seem to keep changing. With that said, some do understand, so you may find it helpful to think about using "people first" language. Abby is a girl first; therefore, she is a girl with special needs rather than a special needs girl. A child with autism rather than an autistic child. We all get it wrong at times, but loving people well requires we learn from our mistakes and try to improve. Also, I invite you to ask questions, but know it is offensive for an adult to ask "what is wrong with her?" There is nothing wrong with Abby. Ask me to tell you about Abby. Ask me how to interact, if she talks, or how to dislodge your bleeding hand; but don't ask me to remove her from the room when she is "singing" (joyfully raising her voice).

Ask question rather than avoid us in your life. Ask how to make accommodations at a gathering (or just your house) instead of crossing us off the guest list because you don't know what to do. Be flexible when we show up 30 min late, have to leave early, bring a caregiver, or need to hide breakables from our 4'8" toddler who likes the sound of breaking objects.

Danielle... one of Abby's favorite people :)

*Warning... this might wreck you*

I will warn you becoming apart of Abby's world will mess you up. Her love and devotion is so raw and genuine. When she backs up onto your lap like the toddler she is in her head, there may be public tears. When she dips her head into your chest to get a hug it may be your undoing. You'll never be the same. I don't fully understand it, but I know it to be true after fifteen years of Abby. She's so complex and simple all at the same time. My friends, she is beautiful and perfect... exactly who God created her to be.

I don't know all that God has planned for her in this life, but her innocent affection is seriously moving. If you ask for a kiss... wait for it... she will plant one gently on your cheek or give you hers. If you've never seen her smile or heard her laugh, you've missed one of this life's greatest pleasures. True joy bubbles up from within her and the only way to describe it is the joy of the Lord coming through her.

She is a simple vessel, existing for HIS glory as her life changes ours. If we haven't formally done so, we invite you now to be a part of our world and thank you in advance for taking the time to do so.

Surgery needed... prayers requested

2016-11-14T09:16:00.001-06:00

There's always those times in life where we know this moment in this time will forever change our lives... I answered the phone to the voice of the urology doctor that afternoon and knew this would be one of them, but not in the way you might be thinking.

Let me explain.

After Millie had the brain bleed and we spent those months in the ICCU, I realized Abby wasn't going to be "our thing". Birthing and raising her wasn't going to be the only thing that defined our lives. It is just one of them (albeit still a a big one), but not the only one. It was one of those "Ah-ha" moments. I'm pretty sure it was just the Holy Spirit preparing me for this life. I was oddly not discouraged or dismayed, but calmed and maybe even weirdly empowered.

We can spend our entire lives "waiting for the shoe to drop" or "that phone call that will change your life", but then we realize we've wasted SO much time waiting for bad things to happen rather than loving and living the life we've been given.

That one event taught me two important lessons about hard things:

Our lives would always be bigger than us. I'd never be able to handle my life without HIS help.
He always provides. This event was "above my pay grade" like many before it, so HE'd have to handle it. I could not.
There will be more tough days ahead, but I need not fear them.

"urethral diverticula," the urologist said. I asked him to spell it because I had no idea what he was talking about.
"How far are you willing to travel," was the next thing out of his mouth.
(deep breath)
"You won't find it if you google it for a child because it's congenital. I've only seen a case, and I'd like to send you to Boston, Philadelphia or Seattle for the surgery," he proceeded.

Now he had my attention, so I asked a few more questions such as the urgency of the surgery and the need for a specialized specialist. We concluded with a plan for him to contact some doctors and try to find one who would take on her case since there weren't doctors who do this, and we'd follow up in a week or two to discuss what he found.

It's not acute, thankfully; but it will need to take place in the near future or it will cause infections and become emergent. We want to take care of it before it comes to this. It may have caused the one that landed her in the hospital. It is similar to intestinal diverticulitis which is pouches in the intestines as this is a pouch off the urethra.

There was a peace that came over me like a blanket in the days that followed. It seems cheesy to say, but this is how it came...

I felt a picture of royal blood pumping through my veins. This strength HE is building in me through the struggle is real. As in Jewish tradition of daily prayers that include remembering the God who delivered them out of Egypt, HE too reminded me of the events where HE has carried me. I usually try to start on my own strength, but then refer to HIM when it gets too big for me. This time I could feel the strength building inside of me.

It was different because I know the LORD will take care of us. I don't speak out of hope or just promises in the Bible (although we can take those to the bank too), but from experience. Those promises I've claimed in the past are seared into my soul. They are no longer words on a page, but a part of who I am because of who HE is in me.

I know HE has a good plan for our lives. If it means taking a trip across the country, then he will provide the details. See? I've done bigger than me. I'm not going to enter my cycle of despair. Been there, done that. Not fun or helpful.

I'm hopeful the doctor with come back with an option closer or in a place I have close family or friends, but if not there's a reason we go where we go.

My tears now are not for me but for Abby. I hate this for her, but I know MY GOD is HER GOD too!

We ask prayers for wisdom for our doctor and favor with other doctors to take it on. When we find out details, I'll post with prayers for specific provision.

With a grateful heart, I thank you in advance for your continued love and prayers for us. We are blessed by you.

Answered Prayers

2016-09-08T08:56:00.000-05:00

Could this be what I asked for or did GOD misunderstand my prayer? Do I need to be more specific next time, or is this like the time I asked HIM for a break and ended up sick in bed to relax?

I spent the long weekend one-on-one care giving for Abby. It was exhausting but definitely beneficial so I don't lose touch with where she's at, nor will I likely take for granted the Saints that help me with her. Abby likes school, routine, her toys, and her bed. I like having my mornings with her, but I really enjoy spreading the love with other caregivers. Being without our conveniences and care givers, is a good bit less enjoyable than most view a weekend away.

I'm living a life I didn't chose, yet maybe it's exactly what I asked for? I never wanted to me normal. I wanted to make a difference in this life, but pretty sure I didn't expect to feel so weak and vulnerable in it.

The struggle is my strength

What if the struggle is actually the strength? What if the difficulties are what bring the most meaning to life? Could those tough jobs, difficult kids, and strained relationships be what refine and define us into the best parts of who we are? Could the parts of my life where I fight for joy, exhaust and disgust myself the most be the best parts of who I'm becoming?

What if all the pain is stretching me into the person I've asked the Lord to make me? I know if it wasn't hard, really hard, it probably wouldn't change me. Perhaps I wouldn't see the need for such a big God and get to know Him in this desperate way. What could happen if the words weren't from a trained pen, but a big GOD pushing (sometimes dragging) them out of me?

Over the past decade or so I've been desperate to find a place where "Happy Abby" could be found. I would do anything to help find the magic key that unlocked that door and released all her frustrations and subsequent stages of destruction and aggression. I've searched high and low for the right doctor, therapist, weighted blanket or swing hanging from the ceiling in our living room to bring her peace; yet it's always evaded us.

I've been desperate to find her calm for her sake, mine and her sisters. I'm almost embarrassed to admit that I've spent the past twelve years despairingly pleading for her sisters to get out of her way because I can't be everywhere all the time... and she'll hurt them. I had to separate the truth of her hurting us from the need to urge the smaller to realize they were quicker. It breaks my heart to say it, so I push it aside unable to deal with the fear of the damage it could cause. Every fiber of my being wants them to be apart of her life. I want them to experience the beauty in their sister, but I wonder if these seasons have darkened their lives instead of enlightened them.

What if...

What if this lack of emotion and different interaction is a heightened understanding or breakthrough in communication that's needed to usher us into a new Abby where those unsettling days fade? Or maybe her not choosing me is her settling into her reality with a variety of care givers? Maybe she's widening her spectrum of preferential people to the point of not needing or requiring so much of me? Maybe her crying at night and in the morning are new attempts to tell me she doesn't want to be in her bed anymore. Maybe she's finally aware of her ability to move me and she's using it? Maybe she's not grabbing her sisters as much because she's accepted them and wants them to stay close?

Answered prayer?

What if HE is giving me exactly what I asked for, even if it's been a painful process? Could it be the gift I've given a lot of prayer to... a less aggressive Abby?

&

What if HE is preparing the sisters for the life HE has for them instead of the life I WANT for them? What if the chaos is shaping them into the tenderhearted, compassionate girls who love God and others fiercely... just like I've asked Him?

I really don't know, but...

Today I HOPE
Today I TRUST
For I don't understand the METHODS, but I know the MAKER.

Abby is not the same

2016-08-30T09:07:00.000-05:00

"How are you doing?"

Does anyone else ever feel there are too many emotions all jumbled up inside like a huge game of scrabble needing to be put together before answering a question like that? So... we choose "good" or "fine" and walk away feeling disingenuous. It's as if we desire to have a real conversation, but the words are just too much for us to handle in our own heads, let alone pass out to others? I've felt that way when talking about life these days. I so appreciate those who take the time to ask the question and wait for an answer, but am so disappointed when my words aren't up to the conversation. I want to connect in those difficult moments, but the voiced, aloud words are painstakingly hard to push out in a way that reflects what's going on in side of me.

What do we do when we're having a hard time formulating a word picture of our lives we want to invite others into? We don't mean to isolate but the moments are too heavy for words. We know we're just sad, stuck, insecure, frustrated but cannot connect them to the situation in any kind of semblance of order to make sense out of our own feelings let alone usher someone else into the mess without heightening our insecurity.

How about when the words finally find the right sentiments, but they're delivered onto not-so-ready ears? The listener may not have the framework of your relationship or be in a place to respond appropriately. Her mind may be down the hall chasing a child or back in an ugly early morning conversation.

It's easy to feel naked and alone in those moments. You finally feel safe enough to let a tear roll down your cheek and the receiver grabs a tissue and shames it away rather than inviting the dam to ahead and break down. Knowing those words and emotions need to find place in her heart as they come from yours.

Oh! I want to be that person whose heart is open and capable to stop and hear those words when they are spoken. To ask the question and not rush by while it's answered. To have the people in my life know I'm not a machine chugging from one place to another, but real live skin and bones loosely covering an open heart. One that beats just like theirs with joy, pain and all the beauty and sadness a life can absorb. To know my heart can always take more because that's who I am created to be. Knowing I can take infinitely more because I am not just me, but HE in me.

My emotional vomit

I write because I can more easily find the words without a person staring back at me.

I'm stuck in the three weeks of Abby being in the hospital. I've actually chosen to set it aside over the past few months because I need to do other things and remaining there paralyzes me. All the "what ifs" are just too much. I know some need to be thrown away as a bucket of unlikely fears, while others need to logically be dealt with. I've resisted the emotional ones because "going there" makes it more real.

My fears... truth...

Abby could die She will die. Everyone dies.

She might live longer than me He's capable of caring for her w/o me

Abby will suffer "His grace is sufficient" for me and Abby

I could no longer care for her I need help now and he's provided

I could've done something better I give my best and trust God to fill in the

that would've made a difference blanks

One thing I have learned is sorting through the emotional dirty laundry is just as important, and maybe more, then the physical because left too long it will start to stink. The odor can even spill onto other areas of my life. For instance, my fear over my lack of control and the severity in the range of possibilities in Abby's hospital stay has heightened all my general fears. I've become fearful in ways I've never even thought to fear. I fear to the point of resisting new things, even when they could be fun and exciting. Uggg...

Abby's not the same

Abby's different. Those are hard words to write and even tougher to read. And not just different where she likes green instead of blue, but...
I'm not sure she recognizes and prefers me anymore.
I thought she'd come out of it. I started this post awhile ago, but decided I was being a "Debbie downer" and should give Abby time to come out of it. I also didn't want to get caught up in mourning something that wasn't true or would change. I've also wondered if her emotions have just changed? Maybe she does recognize me, but isn't as happy about it as she used to be? The cynical me wonders if she remembers that pain and sees my face doing nothing beside her? Probably not truth, but the ability I've had for almost sixteen years to calm my girl seems to be gone now. She no longer dances and sings when she sees me in the morning. She no longer seeks me out above a stranger in the room. When she cries I cannot hold her and sing as I feel her body relax beside me. I feel like a caretaker... an advocate, but not the mom.

She didn't really want to get in the water at all. She wanted to sit in her
chair in the hot sun.

Therapy: Aging out

I battle between acceptance and fight. That answer I assume is somewhere in the middle. I need to let myself mourn the changes that are hard, but fight for the ones I still have control of. I've leaned toward trying to help her communicate, but it's not an easy road. It's brought to light another hard reality about a growing child with special needs... aging out of systems.

Therapeutic services aren't near as accepting or easy to obtain with a fifteen year old like they were for an infant or toddler. In fact, they haven't returned my calls at all. We got put on a wait list, the same list we've been on since we moved here almost three years ago. I had forgotten about it because I got tired of waiting and went somewhere else (30 min away) and hadn't realized we never got a call. Finally got a call from speech therapy and she just referred us to someone else. It may end up being a good referral but it feels discarded today.

There's something I hadn't processed about my teenager with disabilities... it gets harder and the help available is dwindling. Those days of the whole therapeutic practice cheering Abby on as she walked for the first time are probably in our past. We used to have the whole world "ooing and awe-ing" over our special little angel, but now we've joined the "strained pity smile and don't make eye contact" crowd.

Naively, I thought the fight would get easier. I thought the days of attending therapies would be our most challenging days, but not being considered a candidate for therapy is vastly tougher. We have to show she can be rehabilitated, but that's doubtful at best because we don't really know what kind of gains she will have.

It's so hard because I'm not giving up on her, but I am mourning the fact that I'll have to figure it out on my own. I imagine a bigger city would be easier, but there's not guarantee and that's just not where we live... literally. I know God's not surprised, but I'm frustrated.

Step closer

The answer is always to set aside my plan and ask God for his. I cannot do all I think needs to be done. I must block out the big picture sometimes and do just what He's called me to do in each moment. I cannot fix or change the past, but I can choose how I walk into the future. God's answers always begin in the same place...

"Take a step closer"

As school starts for my three big girls, I'm trying to embrace the silence (as much as possible with a two year old). I need to listen in order to heal and heal in order to move forward. I refuse to stay in the same place. I don't know where this next season will take us, but there are four things I do know:

It won't be any easier, so I can stop trying to get back to that imaginary place here on earth and set my sights on Heaven. I can mourn the losses, but ultimately strive to find contentment in the here and now as I continue to move forward.
I won't have to do it alone because He's always there, and he provides the people in my life to navigate each new season with me.
Although it might not feel good all the time, I can trust He has good things in store for me. I can look with excitement to the future embracing the unknown rather than fearing it.
If I can be honest with these struggles, then Lord can lead me to the correct balm for each one. Until I'm honest with the thoughts and fears I'm trying to shove down and not deal with, they are just holes in my armor that will leave me more vulnerable later on in life when I am most weak and least expecting.

Recharge

2016-06-30T07:46:00.000-05:00

Missing this one...

Woke up this morning with the headache I had yesterday, popped a couple migraine pills and quickly raced around the house to get Abby ready for summer school. All I've thought about this morning is how I could recharge to make it through this day. Actually, I've obsessed all summer on this topic.

I just want to be rested in the morning and feel capable of taking on my days. I want to be enough. My deepest desire is to find a pill, an exercise, or the right inspiration that will "jack-in-the-box" me out of bed in the mornings being ready to take on my day. Instead I roll out bed willing my legs to hit the floor lest I fall on my behind, drag myself to an upright quiet place, and sit empty asking Him to carry out His plan of "...exceedingly abundantly more than I can ask or imagine..." (Ephesians 3:20).

Hope. I'm asking and hoping for more than just making it.

I'm sipping my regular coffee waiting for my chia seeds to gel and praying once again for the God of the universe to refill my cup... to overflowing.
I am empty.
I don't like being so desperate.

I have to shelf the "to do" list of doctor appointments I need to attend and those I need to make, the plans to "spontaneously have fun" with my girls, the mess of a house sprawled all around me and...

BE STILL

This Martha is accustomed to doing something, but there's not enough of me for that. I cannot recharge myself. I'm not supposed to. I'm supposed to be empty and come to the fountain. I'm not good at this.

I planned to go home with the girls this summer. Somehow I thought in my mind if I could only make it home, I could rest. I could trust the Lord's people to care for me when Abby was in the hospital, but I wanted "my people" to recharge my soul. He wants to do that for me.

Now I have to go to "Plan B" which should've been "Plan A" and let the Lord give me enough for today, and trust he will do it again tomorrow and the day after that. In my head I know HE is capable, but my whole being tries everything else first.

Matthew 11:28
"Then Jesus said, 'Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.'"

3 Truths When Grace Feels Out of Reach

2016-06-21T08:34:00.000-05:00

A couple of months ago I could physically read "His grace is sufficient" (2 Cor 12:9) and "He who began a good work in me, will be faithful to complete it," (Phil 1:6); but my weary body just didn't feel it.

What do we do when we know the promises of God, but just can't wrap our minds around them and feel them inside us? I so WANT to find my calm regardless of what is going on around me, but seriously I'm so BAD at it. The whole tone of our home rises and falls with the circumstances of this life. Usually it's closely tied to the state of Abby. I get stressed when my normal is like a boxer bouncing around the ring dodging a punch. I stay at a hightened state of anxiety trying to love on and entertain the sweet sisters, tend to Abby's cares, or find another specialist with the hope of unearthing a new remedy.

A blanket of sadness covers our home when she has to be contained in her enclosed bed. Even though she likes it and doesn't seem one bit upset about being in there, it still breaks my heart to not have her as an active part of our family.

Abby is not the thorn in my side, but her aggressive seasons seem to be. Her little life has been God's greatest tool to change me. I love being her mom, but each time she enters these aggressive states I feel so helpless other than to pray that this time we will figure out the cause or just beg God for it to be brief. She seems so unsettled as she grabs at me to tell me something, yet my efforts to figure it out or calm her by osmosis when I wrap my arms around her just end in more pain and frustration.

Three truths I found in my darkness:

1. "His Grace is Sufficient... His power is made perfect in my weaknesses..." (2 Cor. 12:9)

Even when I feel I can't go on from the exhaustion of caring for her while she hurts me and the emotional strain threatens to drive me insane, I continue to wake up each day and have a measure of hope that gets me through. I'll have my sweet Abby back. This hope doesn't come from me, but it wonderously appears each morning.

2. "Be still and know that I am God." (Psalm 46:10) I draw closer to Him every time we visit this place because, as Jen Hatmaker said in her book Ms Understood, "...all a Christian wants in the night is her God. We experience single-minded devotion othat sustains us in the night and changes how we live when the sun rises again." These days always bring me to my knees. When I'm paralyzed with the circumstances in my life, I stop the rat race I let myself get sucked in to and run to the one who sustains me. I grow more because I listen better and more often. I need Him more, so I seek Him more and find him immeasurable more than I could have ever asked or imagined. He fills me to overflowing, and gives me the strength to... wife, mother, daughter and friend again.

3. I don't pretend it's okay and that I'm fine. I acknowledge my pain and share it with friends who carry my burdens with me to a big God. "Two are better than one... if either of them falls down one can help the other up. Pity the man who falls and has no one to help him up." (Eccl 4:10). I've been blessed over and over in this life with some of God's best jewels in the form of blood siblings and body of Christ sisters. They don't grow weary with my pain but lock arms and carry me... over and over and over again because that's what real friendship is like.

When we least expect it, she comes out of it. It's as if she wakes up a different person one day and we have no idea where she was or how and why she came back all "sugar and spice and everything nice." As much as the blanket of stress washed over us, the giggly gladness permeates us as well. Abby hugs, kisses and smiles. She sits and plays, eats without grabbing and navigates around her sisters without incident. Undoubtedly, we love her the same through every season, but it sure is easier to show it during these times. I admit I pray over and over for The Lord to let this version of Abby stay and keep the other away, but once again He has other plans as he proves his ways are higher than mine.

We've began a journey this past week into another Alaskan winter of long, dark nights as we prepare for our first trip back to MN in a year and a half. My fight wanes at the thought of close quarters and an exhausting visit with an aggressive sidekick. Despite my tears and fresh wounds, I choose to trust in what I don't see and have faith in the beauty He can bring when all I have are ashes.

Carried in SC

2016-05-13T08:57:00.000-05:00

Grandma spending a couple nights with Abby

Writing can be cathartic, but in order to write I need to feel...
and sometimes the "feels" are just too much.

HELP!

"Seriously, Lord, I need my people. THIS is really all too much," I prayed. He said, "How about I show you my people?"

He reminded me...

of Millie's time in the hospital and the journal of blessings I recorded during that time.
the friends who had already kept our girls that past week during spring break and several more who had offered.
the amazing friends He had worked into my life in two short years.
even though I couldn't see what He was doing, I could trust Him.

Mrs Jeanette, one of her teachers from school, loving on Abby

New Blessings

"I'll be there Monday," the text from Danielle (one of the people I love most in life) popped up on my screen. "Rock Hill (our church back home in MN) is helping me come." None of us had asked for any help. Danielle just walked into church that morning and one of the assistant pastors walked up and said, "You need to go there and we're going to help get you there. Just because they moved, doesn't mean they're not still family." Heidi followed about a week later after my mom came with the help of her small group (also from our church back home).

(Go ahead and find a tissue if you need. That's the kind of folks we left in MN... family. Now you see why I was so broken to not have "My People"?)

That's great, God, but now what?

Each week there were moments of panic because it was all too much for us. We couldn't be in that many places at one time, not to mention the sanity of trying to be. God provided one thing after another, but I still had thoughts like, "That's great God, but what about ____?" Because my faith is bipolar like the Psalmist's, I went there more times than I'd like to admit. Thankful He is faithful even when I doubt and question. He showed us once again how his blessings always outweigh the struggle. Who else could work out over three solid weeks of people who knew us well enough to step right in and help? How does one put that kind of extravagant love into words other than just God? He was showing me over and over again that I wasn't supposed to figure things out, but He knew what I needed long before I did. The only thing I continually got from the Lord was, "Draw closer... I got this."

Cuddling with Heidi

It wasn't me

I honestly lacked the brain capacity to plan or schedule anything. Our days were ordered from above because there was no earthly way to take in that much and be able to do more than just breathe. Broken in a pool of tears was the best way to describe me during that time. I could do nothing more than hug my girls at night for a few hours and get back to the hospital with my Abby.

One of several baskets... feeling the love

Exceedingly, Abundantly...

There wasn't a single day at the hospital in three weeks where there weren't multiple visitors. There were times I had to send people home without seeing Abby or tell people to delay coming because there had been too many visitors.
Coffee, coffee and more coffee. I don't think I paid for a single cup in three weeks and drank it like my life depended on it.
Baskets of snacks, books, chocolate, gift cards, and essential cosmetics showed up in my room from different groups of sweet friends. I was never hungry or out of snacks for even one day.
Meals for my family. We had meals for three weeks. There were even a few from people I didn't know.
People just dropped off bags of groceries at the house.
Because coming here and helping wasn't enough, friends back home gave Danielle money to help out while she was here. She went out and bought some groceries, and picked up gift cards.
My CBS (community bible study) family took time out of their regular schedule to stop and pray for us. The leadership team also took a few minutes to write down special verses. I set them out on the table, stacked them and read through them many times. Would you believe they were all different verses? My core group spoiled me over and over again with gifts, visits, hugs and prayers. They are such amazing ladies who loved me in such personal ways.
Our church friends came by daily, organized meals, brought meals and gifts, and prayed.
The hospital provided meals for me every day and as long as there was room on the hall, a private room so I could stay the night close to Abby. Guests are not allowed to stay and sleep in the PICU, so I would've had to go home if they hadn't. Being there allowed me to get way more sleep than I would've otherwise.

Prayer

I felt so defeated many times that I could do little more than bow my head in silence. I knew He was close. I trusted in a plan I couldn't see or feel. I knew my strength came from Him, but there were times I was too shattered to find the words. I coveted those who came, took my hand and prayed with us and for us. Those are times we just needed someone else to take us to the Father (Mark 2:4).

Thank you

My heart is so full as I think about those hard days, yet all those who chose to walk with us. There's something about having someone else witness your deepest darkest nights that is oddly life giving. Knowing I'm not alone in my struggles is powerful.

I'm so grateful for all who were physically here with us, yet so aware of those who followed and lifted us up in prayer from afar. Humbled by love doesn't even quite describe it. Every message, text, card and gift was truly treasured. Each brightened our day and reminded us that we weren't alone.

With a grateful heart, I Thank you!

Abby's First Hospital Stay

2016-05-03T11:29:00.001-05:00

I curled up behind Abby's bed to the sound of the ventilator breathing for her. It was a mix of relief and numbing fear. I opened my CBS (community bible study) lesson to catch up from the past week, and the title was "Call to Courage". Silently the tears ran in streams down my face as I tucked the earbuds into my ears and pressed play because "All a girl needs in the night is her God." (Ms Understood)

(If you haven't read my last post, stop and go back here because it really sets the stage for Abby's hospital stay. We were pretty beat up before we even took her in.)

It all started with an increase in agitation that developed into yelling, trying to pull the fan off the ceiling, throwing her food and attacking anyone within reach. We didn't know what else to do, so Easter Sunday we headed to the ER instead of church. The doctor didn't even come in the room because she attacked anyone near her. Instead she handed us some restraints, and the kindest "tough guy" nurse graciously took care of us in the sweetest way possible while he was attacked. After several hours we found she had a UTI (urinary tract infection). With an admirable effort to calm her with no success, we wrapped her up and headed home praying the meds would kick in soon and knock her out. Evidently, people with "diminished capacity" can have a sort of psychosis with a UTI. We figured we'd have to just wait it out?

They next day, Monday, was the calm before the storm. She slept pretty much all day. It was a nice reprieve and a relief to know we had a cause for her craziness. Tuesday arrived and angry Abby was back in full swing. We took her back to the ER for a new IV antibiotic a calming drug. They decided to admit her to make sure it was all working. She eventually calmed for the night and by noon the next day, Wednesday, we were even able to take off the restraints.

Two hours later all hell broke lose. The drug used to calm Abby so well the night before, Haldol, caused a severe dystonic reaction. Her whole body was spasming and contorting, unable to straighten. She was awake the entire night as they futilely tried to stop the spasms and calm her little body down. They even did a CT to see if she was having seizures because the reaction was so big. Early that next morning, Thursday, the sweet nurse that battled all night with the Doctor and Andy to help Abby, pushed her into the PICU (pediatric intensive care unit). Even though they eventually found a med cocktail that would knock her out for a short period of time, the dystonic reaction continued for a few more excruciating days. She would eventually cry out every time the spasm would come as her body was so tortured. Think continued charlie horse over several days. At one point her oxygen was even falling because the spasms were constricting her airway. It was the most pitiful, heart wrenching thing to helplessly sit by and watch. I know it was only the prayers of our people and a really BIG GOD that willed us to endure those days. I had to trust Him to carry her because I could not.

During the two hours she'd get of rest with the valium shots and other drugs, the intensivist found a bowel impaction (thought it was an obstruction at first). He said it was very painful, so they needed to be aggressive with treatments get things moving. By Saturday night things still weren't moving and she had started wearing off the skin on her elbows and her voice was hoarse from the screaming. It took four nurses, my dear friend and me to do the last enema attempt, catheter, and a new IV since she had blown three others with all the meds. That night was the closest I've ever been to checking myself into a padded room.

She slept little that night and by morning the meds had stopped working at all. I sat by her bed and wept. I didn't know how much more her body could take. My cup was empty. A friend showed up with coffee and we gathered around her and cried together as we prayed.

The only answer now was to intubate her to calm her down. I left the room as they put her into a medically induced coma. We knew it was necessary but a new level of complete helplessness washed over me.

The next day her lung collapsed and a few days later a bronchoscopy was done to try to clear things up. It took most of the week and a half to get that back in working order. In the meantime, her bowels cleared out with a "graphing" procedure done by a surgeon. That was followed by an Ileus, which is basically a paralyzed colon. After about a week on IV nutrition, they put an ng tube down her nose to see if putting some liquid food could jumpstart them into working, An MRI was done as a follow up to the spot that was found on the CT scan. It gave us a scare for about a day as a cyst was found, but we "put it on a shelf" to deal with later as it didn't seem to have any bearing on what was going on now.

Her lungs started working into the next week as they started weaning her off the vent for the first time. She had graduated to the apnea mask all in one day when something went wrong and her oxygen dropped to nothing as she turned blue. Thankfully I was spared that scene but dad was there. After that they gave her a day to rest before trying it again. The next try was successful and another hurdle passed before us.

She woke up pretty much paralyzed. She couldn't even hold her head up. She seemed to reach for us until we noticed she reached for anyone at her bedside. I was crushed thinking my Abby was gone. There were many private tears that week as Grandma left and Heidi came in. Danielle had spent her entire time with us as she was under. I gave up trying to be strong and just cried again. It was really too much to take in. The next few days she went through withdrawals complete with agitation, constant vomiting, shaking, fever, crazy low heart beat and high blood pressure. So many intense highs and lows.

Speech therapy came into see her and she aspirated again with her stats bottoming out because she was too weak to control her swallow and protect her airway. She went for a swallow study and failed it. Physical therapy came in and it took two of them to position her to prop her up. She asked me about the positioning equipment we had at home and how many stairs in our house. I'm not new with equipment and went into panic mode. I was new with being this sick and knowing what to expect, and I really thought she may not move again.

Despair was knocking at my door, but God's grace surrounded me with so many sweet folks who held us up and prayed us through. Every day she improved with her strength until she was trying to climb out of the bed (she would've fallen on the floor). Once again we had come full circle and she couldn't be contained without restraints or drugs and neither would've helped her at all. The decision was made to let us go home with the PICC line to see if being in a familiar place would calm her. We all knew she wasn't eating or drinking enough to go home, but we had to try.

That first night Andy and I broke down together as she didn't calm down at all in her bed. She was agitated and restless. She was trying to stand up when she totally couldn't. She had to be watched constantly and I still wasn't sure she recognized any of us.

After that night, I stopped crying. I usually give myself time to grieve and then dry it up (for the most part) and tackle what is ahead. I made doctor appointments, tracked records down, got to her pediatrician in Columbia to help with a plan, and set up therapy evals (thanks to Millie we already had sweet connections).

We've seen Millie's neurosurgeon in Charleston and he wasn't a bit concerned over Abby's MRI results. He said it's not even a cyst. We got in to see a GI the same day and despite losing ten pounds and not eating/drinking much he thought she looked surprisingly well. He was willing to give us a month to get her back into shape before we talked more about a g-tube. Physical therapy and speech therapy are on call as the only thing they can do is encourage her to move and eat. Since we can do that, they really didn't need to come out unless she got stuck or stopped progressing.

I want to say it's been a slow road to recovery, but I actually think it's been quite fast. She's up and walking now, eating more and even taking drinks by herself. She got back on the bus this morning to go to school. Her previous shadow had quit about a month before Abby went into the hospital, so our Lucinda decided to go to school with Abby too! What a sweet gift. God always provides.

...As I finished my CBS study the first day on the ventilator when all felt so hopeless, there were several quotes our teacher, Stewart, the Lord used to inspire me to keep moving forward. I pray they will encourage your heart wherever you are today.

"The only way to lose is to quit"
"What do I treasure most and have I given it to God"
"How I suffer matters"
"Courage is not the absence of fearing but walking scared"
"He has already given me everything I need"

God's blessings always outweigh my struggles...
Stay tuned for my next post on His amazing blessings through this time.

Welcome to my world

Chick-fil-a rocks!

5 Reasons to Make New Friends

5 reasons to make new friends:

Wasting time

#INAM

Another birthday... 17

Jeremiah 29:13 (NIV)"You will seek me and find me when you seek me with all your heart."

2018 New Years' Resolution: Wasting Time

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Tug of War

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We let go, and then...

We let go again... and again... and again.

Summering in MN 2017

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Psalm 23

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"ORDER YOUR DAY"

Jeremiah 29:13"You will seek me and find me when you seek me with all your heart."(NIV)

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***If you could share how you are different because of Abby and/or her family in your life, it would greatly bless us...

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Abby's First Hospital Stay

Jeremiah 29:13
"You will seek me and find me when you seek me with all your heart."(NIV)