Untie the Ribbons

The Sissy Test

2011-09-14T20:30:00.000-07:00

When my sister and I were back in elementary school, we played this game where you scratch your hand over and over and over again, to see who can keep at it the longest and not give in like a sissy! I was horrible at the game. With the least amount of pain, I caved and gave up. My sister was much better! I remember she had quite the scar from the silly game!

I was reminded of that game recently with Sam's favorite past time at home. He is very subtle, but it is consistent. He loves, no seriously it must be a passion of his, to just sit and irritate his little brother over and over again. If we are in the car, he moves his foot to Noah's leg and just taps. He does it over and over and over again. Of course, this drives Noah crazy and he gives out a blood curdling scream with every tap.

If the kids are watching a cartoon, Sam will sneak up behind Noah and just tap his head over and over again-causing the same screaming reaction from Noah. If we are eating dinner, he will try to steal his food or hit him or sometimes just give him a mean look, but all result in screaming from Noah.

The affect of this, on my nerves, is exactly what I used to feel when I would try to play that dumb sissy game. It's the repetition of discomfort that almost creates a feeling of craziness. Yep, this is currently my life, the entire time that Sam is awake or not at school. It's no wonder that most days I drop him off in a daze, just longing for quiet or why I can do no more than stare at the wall in blankness, once they have all collapsed in bed for the night.

This much I know, raising a child with special needs is not for sissies! If this is my test, each and every day, the fact that I haven't been committed yet, is a good gauge for how my pain tolerance has grown! I still may not be able to scratch a hole into my hand to prove my inner strength, but the fact I'm still here, says enough.

Snuggle Time

2011-09-13T21:19:00.000-07:00

Every night when I put Sam to bed, we like to snuggle for a few minutes. We have our little routine and then he is very good to fall asleep. Tonight was kind of a busy evening and I didn't really have time to snuggle. I didn't tell him that or anything, I just didn't go in and chat. I was busy doing other things. I walked past his room and noticed that he had gotten out of bed.

In my exasperated voice, I said, "Sam, please go to bed."

In the cutest voice ever, he says, "Mommy no like me." And started to cry.

Of course it pulled at my heart strings, but it also made me happy because he expressed his emotions so well. I already know that he is hypersensitive to me ever getting impatient (which continues to happen probably more than it should), but seeing him with his hurt feelings felt so normal.

I instantly snuggled up with him in his bed and reassured him that I loved him so much, more than he could ever know. And then, as he does every night, he asked me "what we going to do tomorrow." I gave him the run down-step by step of the plans for the next day and he was happy again. And just before I got ready to leave, he said, "I love you."

I sure love snuggle time.

I'm the mom...I'm in control

2010-10-15T20:26:00.000-07:00

There once was a time when I truly believed that all control lay within my grasp! It's so wonderful, isn't it? You bring that first baby home and although you are scared, you have spent nine months reading all the books you can find. You have it all planned out! You are going to do it different than your mom did, you're going to do it different than your mother-in-law, you're even going to do it different than the mom down the street because this is your baby! It's a marvelous feeling as you decide when bedtime is and what the daily schedule will be. Of course, the baby does throw a few snags into your perfect plans because he or she needs to eat 30 minutes before you planned, but even that goes with "your" way. If you choose to feed on demand or if you let him or her cry it out until the clock says its okay-either way-you are in control! You are in the driver's seat and it's an absolute feeling of power and control! Heaven forbid the well-meaning friend or family member who tries to tell you a different way. And whether you want to admit it or not, you do have a few smug moments when you are out in public and your child is doing everything right and someone else's child is having a fit. Let's face it, your child "must" be behaving so well because you fed him at the right time or made a sacrifice to get that nap in.

Maybe not everyone is as psychotic as I was when I first became a mom, but I truly thought I had it all figured out and I was going to do it perfectly! I was even lucky enough to get a really easy first baby who rarely cried, did everything early, was at the top of the charts and never got sick! This only added to my delusion that I knew what I was doing!

I'm not sure when that perception was shattered, maybe because it was a gradual process and no one likes to document the moment they have to eat humble pie. I just know that with each child and every year of parenting, I realized I knew less and less. Even through that, I still clung to my control! If I could control what they watched on t.v. and what friends they played with and what chores they did and when they went to bed and what they ate for dinner, then I still felt like I was doing my job! And if I could bribe them or threaten them to be really good in public, then maybe I could cling to some inkling of perfect parenting.

Fortunately for me, Sam has taught me a new way to parent and it's about letting go of that all important control. Can you imagine? Can you fathom what it feels like to let go? Well, I still cling to what I can, because I'm imperfect and it's a step by step process. But, when I do let go, when I let the moments be what they are and just follow my children's lead, magic happens! It is the best feeling! And sometimes letting go of that control can be terrifying, but it builds strength too.

One of Sam's favorite things to do is explore the world! He loves to walk and walk and walk. Recently, we have learned to reign it in a bit by having him tell us he is ready to walk and we go with him. But it wasn't too long ago when those walks came in the form of him disappearing. The last major time it happened was in August and he was gone for 2 hours. We had to call the police (not a first time experience) and we had detectives here and everyone out looking for him. I was panicked. I was scared and emotional. I felt overcome by fear and the possibilities of what could have happened. During that time, I came to the realization that I truly have no control. The control I cling to is a false sense of security because only God knows what is really happening. In those moments, I knew that I had no idea where my Sam was, but God knew. And then I turned it over to Him. I stopped worrying and feeling so scared and just prayed that His will would be done and that no matter what, I would have the strength to handle it. Believe it or not, that was the most liberating feeling I have ever had. I didn't have to cling to my control anymore. I could let go and let God show me what His will was. We found Sam, barefoot and playing with some boys in a cul-de-sac about 5 minutes from our house. He was perfectly safe the whole time. But what if it had been different? What if he had drowned, been kidnapped, been hit by a car... Would my control have changed it?

This is an extreme example of control or lack thereof, but I think it shows the point of why it's important to just let go sometimes and let them take the lead. It's okay to follow them and let them decide what they are going to do for the day. Now, Sam and I walk every day, sometimes more than once. When he says, "walk mama", we walk because I don't want him to go to great lengths to escape and walk on his own. He has learned to trust me that I will not only let him walk when he wants to, but that I will let him lead the way. Most of the time, our walks look a lot the same. He has a pattern that he likes to follow of things he wants to see in the same order, every day. But sometimes, part way through, he will get an idea and off we go on a completely different path. I just follow. And I love the world he shows me.

Interestingly enough, although I have learned to let Sam take the lead on many things in our lives, I am not as good about that with my other kids. I still hold them to strict standards sometimes and exercise too much control. I know that children need boundaries and limits, I'm not talking about letting them do what they want all the time, but it's finding the balance. It's learning to let go when they are 13 and want to spend time with friends or have discovered girls. It's letting my 9 year old have a messy room sometimes because she would rather be reading a new book. It's about letting my 4 year old make a huge mess in the entry way with her dolls as she pretends and pretends. I think Sam was sent to me to teach me how to just let go more and enjoy life and the individual personalities of each of my children. They don't need to meet my every expectation to be loved, but sometimes I worry my control issues make them feel that way. And so I keep trying, letting them take the lead sometimes and watching where it will take us. Life is truly the greatest adventure and for me, my children and my husband are what make it worth every minute!

My Trip to the Beach

2010-10-14T18:16:00.000-07:00

Around the time that we learned that there were some pretty significant things wrong with Sam, I found a link on a friends blog to an amazing little story about a trip to Holland. It talks about what it is like to raise a child with a disability. I think of this little story often, but lately, I've kind of created my own version. So, in order to give proper credit and let people know that what I am writing is not my own original thought, you can read the Holland version HERE. However, I feel the need to write my own version, with a few modifications below!

I have always wanted to be a mom. I was the oldest of five children and my whole life, all I wanted was to have a gaggle of children of my very own! In highschool, I told everyone I was going to have 10 kids. When most kids my age were dreaming up amazing careers, I only thought about being a mom! When I met my wonderful husband, he talked me down to 5, or at least to take it one child at a time!

My first three children pretty much came without incident. They were healthy and happy and hit all the milestones on time or ahead. I thought I was becoming a pro! I used to joke that my first 3 kids were my first batch of cookies and they were my practice ones so that the next batch would be perfect! I mean, think about all you learn in parenting 3 kids-I was an expert!!

And then I became pregnant with my 4th baby. I was so prepared. John was just graduating from law school, he had a great job lined up, we had just bought a home in the same small town I grew up in. Life was going to be so smooth from then on. Nothing could have been further from the truth. And although life has not been easy, by any stretch of the imagination, I am thankful for all of it.

Imagine that you were planning a beautiful, exotic trip to a white sand beach in Mexico. You've been before, several times, in fact, so you know what to expect! You are excited to lounge on the beach in the warm sun and feel the sand between your toes. You pack several swim suits, a few pull over sun dresses and your favorite flip flops. You are ready to enjoy every minute of this blessed vacation, because you know from past experience that the minutes will tick away all too fast and your vacation will be over all too soon! This time you are prepared. You know the places you will eat at again, which beaches you want to watch the sunset from and you can hardly wait for the day to arrive.

With bags packed and wearing your favorite summer outfit, you board the plane that will take you to Puerto Vallarta. Nothing can quite prepare you for stepping off the plane, in mid December in Switzerland. It's cold and snowing and the wind rips right through the thin capri's you are wearing. You look around, waiting for someone to tell you there has been a mistake and they will fix it right away. You check everything, trying to understand how this is happening, but hoping that it really isn't. You are not prepared for this.

Soon, you realize that this vacation will be different than what you planned. Rather than relaxing on a hot beach, you will be hiking the Matterhorn and you've never hiked a day in your life. You know nothing about thick wool boots with spikes on them or the ropes and pulleys you'll need to climb many rocky summits. You have never dealt with the cold and the elements in this way and you feel nothing but fear and trepidation. What if you can't handle it? What if you fail? What if it gets the better of you? Those doubts and those fears can be a very deep dark hole that you wonder if you'll ever climb out of again.

So, you do what you can. You find the right equipment and you very clumsily learn to use it. You buy the right clothes and find others who have learned to hike this same terrain. They are a Godsend to you, not only because they can do it, but because you actually see joy in their eyes and that gives you hope. Maybe, just maybe, someday you will learn to love this new adventure as well. During quiet moments, perhaps at night when you have put your hiking tools away, you let your mind wander back to life before you arrived in Switzerland. You were able to do so many other things and now you feel consumed by snow and ice and cold. You think about that trip to Mexico that you didn't get to take and you feel a deep sense of loss. In fact, it takes a very long time before that sense of loss doesn't make you sick to your stomach.

But those self-indulging moments are few and then you stick out your chin and get back to work. You feel determined to learn all you can about hiking and surviving the cold! You feel a sense of passion at not only wanting to survive, but to someday find great joy in what you are doing. You work and you work and you fall more than you actually climb, but eventually, you discover a strength inside that you never knew you had. You realize that you are learning to climb and now you don't fall near as much. And there are even brief moments, when the sun sets just right and you've conquered a particularly hard cliff that you look out and see an amazing world around you. You see a landscape that you would have never seen in Mexico. You see a world that many never get the chance to see and words are lost as you stand and take it all in. Your joy is complete in those moments and then, you get back to work.

And eventually, even if it takes years, your old life and your dream vacation and this new reality all merge together into a comfortable place. It becomes home and you find peace with what you now have. You learn to thank God for the littlest of things and you notice others in a way that you never knew how to look at them before. And as those heights teach you to climb and climb and climb, you realize that you have been given the power and the gift, to touch heaven, just a little each and every day.

Pumpkin Patches

2010-10-13T05:49:00.000-07:00

I will update the post later with pictures, but this is the week for pumpkin patches! On monday, we went, as a family to Hee Haw Farms. We got in for free because of an event that was sponsored by the Angel Network for families of special needs children. What a blessing people like this are! They truly are angels. It is nice to do something that would normally cost our family about $60 so we don't do it because we never know if 10 minutes into Sam will have a complete meltdown and we'll have to leave. When things like this are free, it makes it more possible. Plus, it's nice to be in a place where everyone else is dealing with the same issue! There were so many beautiful children there with downs syndrome, autism and a whole array of other challenges. These children are so special and bring such an amazing spirit with them that the whole evening was just awesome!

And yesterday (Tuesday) was Olivia's preschool trip to pumpkinland! We had a blast! She was so excited and loved every minute of it. I think her favorite thing there were all the picture boards that she could put her face in and have me take a picture! She had to do every one of them!

Tomorrow starts Fall Break and I'm so excited! There are many things I want to do and hope that we have time for it all!

Last night, after dinner, Sam wanted to go for a walk. He, Olivia and I walked around the neighborhood looking at all the Fall decorations. It was so fun! He is obsessed with spiders and wants to be one for Halloween! It was just cute to see their excitement over the decorations and their faked fear! LOL! I just love this time of year!

Still Here

2010-10-10T22:31:00.000-07:00

I didn't realize how much I would like this blog until six months or so went by without me writing anything and then I came back to read some of the posts. It's amazing how many little details of a day can be so easily forgotten, if they are not recorded. So, I'm going to try to get back to writing every day again, even if a chunk of 2010 is missing.

I spoke, in one of my last posts, about Sam going to the super awesome private school, but that it would be expensive and hard to get into. Well, he did get in and started this Fall. It has been an amazing experience and the changes that we are seeing give us so much hope! He isn't perfect there, which is actually reassuring! And it is nice to work with teachers who are open and honest about his progress. There are no hidden agenda's, there is no double talk, it is simply a program who wants the best for Sam-just like me. We work together, have rewards set up at home and at school and it is working! He loves getting his "Wow" tickets, both at home and school!

Today is a Sunday and it was a crazy morning trying to get to church on time. You would think that I would learn that life runs at a different pace with Sam! But I often need reminders. So, as I hurried through our schedule of getting kids bathed, dinner in the crockpot, snacks and activities packed, clothes found, last minute items tossed in the dryer and enough shoes for everyone's feet scrounged up, I felt like I was pulling teeth in trying to get Sam to listen. Everything became a meltdown, and in looking back, I think most of it was the way I was talking to him. I was hurried and rushed and exasperated and those emotions don't do well for him!

Finally, as it was time to walk out the door, he was in a heap on the floor in tears. He had pants on (backwards) and nothing else. I sent John to church with everyone else and I sat down to take a deep breath. I waited for him to calm down and then told him we could walk to church when he was ready. Well, Sam is a boy who loves walks! He lives for walks! So, as I waited patiently, he got ready and we headed out. I knew I was already late and part of me wanted to hurry him along, but I knew better. So, we took our time, we walked slowly-taking everything in. He had to stop and look at every roly poly and walk on the rocks in different yards we passed. My frustration was gone, and I let myself just enjoy our time together. We were halfway there, when he decided to veer off the path, towards the canal that runs through our neighborhood. I called to him, but then followed. He had been drawn to a yellow sunflower that he picked and handed to me. It was so sweet and such a reminder to me how beautiful life with him is. His pace is different than most and he sees things in a completely different way, and I love it! I love what he teaches me each day!

We did eventually make it to church about 25 minutes late, but he was calm and happy when we got there. It was such a stark contrast to a Sunday, several months ago when I forced my schedule on him. We ended up in the foyer, in the middle of a HUGE meltdown, when he decided to pee on me. Little by little, I am learning to not push, to not pull, but to just follow along!

Funny Moments

2010-05-04T21:30:00.000-07:00

Lately I have been spending a lot more time with Sam, just trying to let him be him and seeing the world from his view. I've decided that he doesn't need to do thing my way to be normal, I just need to understand things the way he does. This has been an amazing gift and given me so much insight into my darling little man! Getting his ideas out can sometimes entail a lot of charades, but it can be fun! I thought I would share a few things tonight.

Olivia talks daily about getting a puppy. She is obsessed and is planning and planning for this new addition, even though we have told her it will be at least a year before mom is ready for another "baby". At first, Sam would always say "no (insert panting dog sound), horse" Yes, he believed we should get a horse instead of a dog. Well, yesterday as we were walking, he said, "mammy, no (insert panting dog sound), ooh ooh, ah, ah" I said, "you want a monkey?" He nodded, with much excitement and said it again. I found it so cute that he had really thought it out! Of course, Olivia was quick to put things in perspective, as she said we don't have a tree for a monkey.

The other cute thing, took a bit more work to get out of him, so I'll save the actual dialogue. We were discussing hair cuts, and he kept pointing to his chin and jaw line. Finally, we figured out and he confirmed that he wanted a hair cut and a beard-at the same time! He was convinced that I could just use the cut hair to make the beard.

He is a delight and I find myself enjoying him so much more than I ever thought possible. Don't get me wrong, I've always held a special place for him in my heart. As a baby, he was in and out of the hospital on a regular basis. I was with him during most of those times and we had quite the bond. Many times, when he is upset or scared, I am the only one he wants. This can be draining and rewarding all at once. But, I will admit, the past few years have been hard. As he would make mess after mess and give me countless scares, I just felt worn out all the time. I truly felt like he did those things, just to punish me, and sometimes he truly did. If I didn't give him what he wanted, he would storm upstairs (to his room-or so I thought) only to find that he had locked himself in my room and ruined all of my makeup or flooded the bathroom while throwing in my blow dryer and curling iron with all the water.

But he has taught me that those things don't really matter-they are just things. And as I strive to understand his frustration, I feel great compassion for him. I feel bad for the times I get upset and rush to judgment. Someday, I hope to have true charity-unconditional love that overwhelms every other emotion. I know if I have any chance of having that, it will come from these precious moments with Sam. What a blessing he is in my life!

And because I do have 5 other children that I absolutely adore, I don't want to make it sound like Sam is my only focus! I adore them all, and I'm so grateful for this role of motherhood! I'm so imperfect and some days feel that they deserve so much more, but my love and admiration for each of them grows more each day!

Up, Up and Away

2010-05-03T21:34:00.000-07:00

Tonight, after the little ones were in bed, I went for a walk. It was right around dusk and the weather was amazing. The view from our little development overlooks the entire Utah Valley. In one glance, I could see budding trees, green grass, the blue lake and beyond that, amazing mountains still coated with snow! It was breathtaking. As I was walking, I noticed 3 helium balloons had been released into the sky. They were attached together and just made me ponder. They were so free! They floated slowly into the beautiful heavens, with hardly a care in the world. I pondered at how I felt like those three balloons, on this particular evening. Amazing how a good day with a difficult situation can make you feel as if all the cares of the world have been lifted! Compared to how heavy and dark the load was a week ago, those balloons reminded me of how good things can turn and change. After pondering this for a second, I looked back towards the balloons, but they were completely gone. They had disappeared into the vast sky's and no trace of them was left behind. I searched and searched the sky, perhaps because it felt so fleeting, but there was no sign.

I continued to ponder this, and again, I felt inspired by their brief moment in the sky. Perhaps this is life. The challenges come and they can feel so overwhelming. We wonder how we will ever get through it. Life seems unfair and relentless. And then, all it takes is a moment. A smile, a look in the eye when you know your autistic child is really seeing you and everything lifts! The joy is exquisite, the moment is priceless. You feel on top of the world and like anything is possible. You rejoice in the work it took to get to that moment, you feel the strength you didn't think you had, and you know you will get through another day, another month, a lifetime. And just like those balloons, those moments are fleeting and you return your feet to the ground, put your head down and get back to work! However, those little moments are what make it all worth it. You continue to hope, you continue to dream and you live for the next smile, the next gleeful giggle and that joy once again.

Mixed Opinions

2010-04-28T21:39:00.000-07:00

I am continually amazed by the people and opinions I come across in this journey of ours. I truly had this image (before I ever started) that every professional I would have to work with, would have the best interest of every child in mind, they would know what needed to be done and move forward. While I truly believe that those in the medical and educational fields do mean well, I am amazed at the double talk, I constantly get. Everyone wants to undermine the other person and they contradict themselves wildly. That is just appalling to me.

Several months ago, I approached Sam's preschool teacher with the idea that he could have autistic tendencies. I have noticed things from the time he was little, but whenever I bring them up, people often brushed them aside. This time, I pushed harder. I requested an evaluation be done. But I didn't stop there, I went out and set up my own evaluations to be done privately. I wanted to cover all my bases.

The first evaluation to come back was from the school. We didn't get the initial results from the school psychologist, but rather from the preschool teacher basically telling us that the testing showed he was fine and that he wasn't on the spectrum. I was so excited! I told everyone. A week later, we got the results from the private psychologist. He diagnosed Sam with PDD-NOS secondary to his xxyy syndrome. We took that information back to the school only for them to try and undermine what this Dr. from the University of Utah had told us. They said he used outdated tests and basically that he was either wrong or it didn't really apply to Sam in the classroom. The school pyschologist actually told me that his social problems were not a big deal and didn't need to be addressed now, however, they would keep that diagnosis on file so that if he struggled with friends at a later date, then they could see about doing something about it. What? That makes no sense to me.

Then there is the ongoing debate for children with ASD (autism spectrum disorder) and other developmental delays on whether they should be taught with a behavioral approach or a sensory approach. The school (at least in our district) will only approach it from a behavioral approach. However, new studies show that if you can reach a child at that core level and work on fixing what is causing the problem, you have a chance of building a real relationship with them and helping them to develop into higher levels. The behavioral approach mostly teaches patterns and scripts. I'm sorry, but I want more for my little boy. I don't want him to go through life with memorized scripts to say in social situations. I believe, with all my heart, that he can have more! I want him to feel and share love! I want him to experience this big, beautiful world in the way that most of us are able to and take for granted.

I have been reading "Engaging Autism" by Dr. Greenspan. It teaches DIR or the floortime method. When I asked the school psychologist about her thoughts on this method, she told me she didn't know anything about it. Am I crazy that I don't want my child to go through a system that is not even willing to look at other types of beliefs and methods? Am I crazy that I don't want something so strict and structured that it forces my child to behave perfectly within their model and completely fall apart at home or in outside social situations? On some levels, Sam has improved over the past year in school. They say he is perfect in their setting. However, his behavior at home has completely deteriorated. His relationships with those closest to him are distant, most the time. He pulls away from my touch 90% of the time. He rarely makes eye contact with me and he has yet to spontaneously express love to me in any way. If I tell him I love him, he looks away. I want more, and I refuse to put up with what this school is offering. I truly don't know how I will accomplish this. There is an amazing private school that I would love to send him to, but there is a waiting list and expensive tuition. But, I want something different then what the school is telling me to do and what they are offering.

I know I will find the answers, and I know there will be little moments of pure joy because I am willing to fight so hard for him. One thing is for sure, I am done fighting with "the system". I only have so much energy. I choose to put that energy into Sam and my other children. I won't spend another precious bit of my time on a system that is broken and failed.

Long overdue...

2010-04-27T21:22:00.000-07:00

Well, I don't have any pictures for today, and I know that I am over a month late in updating. And I will be honest, I don't know that I have anything of interest to say, but at the end of the day, I need to write about so many things. Especially after days like today, when I feel like the weight of the world is on my shoulders, and I can hardly breathe from the weight of it. I realized that I need to write it out. I need to keep a record of how hard and yet beautiful this journey can be. There is just one thing, if anyone besides me reads this, I am not writing this for sympathy or pity. I don't need anyone feeling sorry for me on tough days, because this is just my life, and I have to find the joy in it, any way I can. And part of finding that joy is recognizing the painful and dark days. There really can be no light without dark. So, please know that my ramblings are for me, more than anything else. Maybe someday, when I am better at handling these challenges, I can look back to days like today and see the progress I've made.

The day started very early for me. I was tired and went to bed early last night, but woke up at 2 a.m., wide awake and thinking about all the things I can't seem to get done during the day. I think about the visiting teaching appointments I meant to get made, I think about the kids' bikes I keep forgetting to drop off and get fixed or the eye appointment for Abby I need to get made. I think about how I didn't get my exercise in for the day nor did I eat the things I had planned to eat in order to lose some of this weight. The list goes on and on. And when the rest of the world is sleeping and infomercials are the only thing on t.v. these lists seem even more impossible then they do in the middle of a crazy, busy day. Finally at about 6 a.m. I was able to doze off. 45 minutes later, I was awakened by Sam, slamming a door and hurrying down the stairs with Chipper's monopoly game. He had wanted to play it the night before, but I told him to wait. He never forgets those things, from the night before. The first half of today was spent trying to appease his obsession with wanting to play a game. We don't have any that would be appropriate for his age, and I didn't feel like another trip to walmart just to appease it. Yesterday the obsession was bubbles, and there was no rest until I bought new bubbles.

By 10 a.m., as I tried to spend a few minutes on the phone making visiting teaching appointments, he found a marker and in just seconds, he had drawn on the couch, the bean bag and the piano. When I took it away (while still maintaining a conversation) he ran upstairs screaming and locked himself in the bathroom. As I tried to get the lock open, he pounded on the wall until Noah woke up. Noah had only been down for a nap about 10 minutes. By the time, I got Noah out of bed, Sam was back down the stairs and outside on the trampoline. It was exhausting and I feel so out of control. This is a normal day for me. I don't get anything done I just do damage control. I feel like he is running the household and we are all on pins and needles, as we ride out the meltdowns, try to keep him from running away and don't even get me started on what it is like to leave the house.

I was very happy when that bus pulled up, just after 12. I sighed a breath of relief and collapsed on the couch. I had no energy for the growing list, although I was able to get the bikes to the bike shop and my appointments made. He was gone for 4 hours, and by the time he returned, I felt better. I love him so much, he just wears me out. I feel like my other 5 children get the worst of me, because I have nothing left. I told John today that I feel like my emotional reserves have even run out. I truly feel so empty and sad. I feel jealous by the smallest things. That is so bad of me to admit. But, I saw a woman out jogging and I felt jealous that she had the time and energy to do that for herself. I can't even shower unless there is someone to specifically watch Sam for me during that time, and even then, I usually can hear him screaming when I get out. I no longer have a life. I feel like I wake up and survive until bedtime and then I collapse for a few hours only to wake and worry and feel guilty about all the things I'm not accomplishing. I hate this so much. I'm tired of crying every day. I'm tired of getting my hopes up about one new thing that might work, only to have it fail miserably. I want to feel normal. I want to blend in when I go out into public. I want to feel happy again. And to add to all of this, we just learned that Sam will not get summer school. So, I will have no break for 3 months. John will be gone some weeks for days at a time, and I will deal with it alone. I know that so many care and want to help, but the reality is I don't even know how to ask. I don't know how to reach out. And I worry that when I talk about these challenges that people get sick of hearing about it. I know that there are far worse challenges in life, and things could always be worse, but for me, right now, I feel like I'm drowning and I will never get out. I also worry that by the time things get more easy and doable, then I will look around and my other children will be all grown and gone and I will have missed so much.

Anyway, I know things will improve. I know I will find answers, because I have to. Life is meant to be enjoyed, and I will find a way to do so. I will find success for Sam and I will find a way to help him without it being all about me. I truly can't imagine how frustrating the world is to him, right now. I'm sure my hopelessness can't even hold a candle to his.

Belated Birthday Post

2010-03-20T15:38:00.001-07:00

I don't even know why I didn't post last night. I guess I was just too happy from that end-of-the-day birthday bliss! It was such a nice day! I was reminded how many people in my life I love and how many of them love me back! I am blessed in every way!

We went to a church couples dinner/dance and had so much fun! We have some awesome couples in our ward/neighborhood and it was so fun to hang out with them! We listened to music and even danced. It was so much fun!

So hard

2010-03-18T22:33:00.000-07:00

I think this project gets harder and harder each day. I really don't feel like I have much to say! There really isn't anything exciting about my life, so I worry about boring any potential readers! Today was a good day. I stayed home most the day, did some cleaning, caught up some stuff on the computer and watched a lot of basketball! I love March Madness! Tomorrow is my birthday, and I can't believe I will be 38. Mitchell was so excited to give me my present early, so I took a picture of it for my day! He wrote me a book of poems, and I thought I would share just one:

Mom you're as sweet as cake and ice cream
38's not as old as it seems.

Maybe that just says it all! I sure love my kids!

I love my Son

2010-03-17T21:17:00.000-07:00

Well, I love all 4 of my boys, but today, I felt like spotlighting my eldest. He is such a sweet and great boy! I am so thankful to know him and have him as a son. He sets a great example for his siblings and really sets the tone in our home! He was cast as Gaston in the school musical, and I think he loves having all those silly girls chasing him! He is such a fun actor, and I love seeing him love something so much!

Stop Jumping on the Trampoline Naked

2010-03-16T22:08:00.000-07:00

If I had a dollar for every time I find myself saying these words, I would be a very rich woman! Sam LOVES to jump with all his clothes shed on the lawn. My poor sweet neighbor. She is a wonderful sweet elderly woman who just loves me and my kids and makes me smile everytime I see her! I'm sure Sam has given her a chuckle on more than one occasion. Most of the time, I don't care. Maybe I should. But I don't. There are way too many other things I can worry about. It makes him happy, and hey, if that's all it takes, well, for now, go for it! However, I did draw the line today when he headed out the front door (still completely naked) to ride his scooter down the driveway. I explained that he had to keep the naked thing to the back yard!

(I know I'm still lacking like 2 weeks of pictures. Things have just been crazy, but I promise the picture for today does have Sam clothed!)

Busy Wonderful Day

2010-03-15T22:41:00.000-07:00

I know I am so behind on pictures. Hopefully I will have time tomorrow to catch up on them! I'm seriously slacking on all things computer! It has just been so busy and by the evening when I have a little time to catch up, I'm so tired! I have lots of pics, even uploaded, I just need to crop, size and post them!

Today I took the kids to a little farm close to our house. They loved it! It was so fun and Sam did so well. He didn't run away once and he interacted with us just like a normal boy his age. His speech is still a bit difficult, but he really says so much. It is just mostly vowels which can be a bit tricky!

He found a worm today too, that he fell in love with. In fact, on the way home (yes, I actually let him carry it in the car) he sort of split the worm in half and who knows what else, but it clearly had gone to meet its maker by the time we arrived home. Sam didn't care though, he promptly buried him in the dirt. A few hours later, when we went to pick up kids from school, he had to bring wormie. Needless to say, the poor dead worm was still waiting in the same spot and got to take another road trip in the hands of Sam. I was just thrilled at his level of interest. He has been making so much progress and it thrills me for the future. For so long, I allowed things I read to tell me what to expect for and from Sam. It created a lot of ceilings for him and me. I mourned the loss of all the things he may never be able to do. Lately, I have decided to throw all that out the window. Sam may have a diagnosis of several things, but they do not define him. He still has all the potential for a wonderful future that my other children do! And honestly, I love exploring each new day with him and seeing who he is becoming! It is an amazing adventure!

Happy Baby

2010-03-15T05:51:00.000-07:00

I fell asleep last night without blogging. It's the first time that has happened since the beginning of the year. I was so tired though, and this darn time change isn't helping any! We had a good day at church today, and a really nice afternoon. It just went way too fast! I love this picture and the amazing smile on Noah's face! He laughed and laughed last night as Chipper played with him! It was adorable!

Crazy Weather

2010-03-14T03:17:00.000-07:00

Even though the date stamp and time show it to be very early on Sunday morning, I haven't technically been to bed yet, so I can still count it as Saturday! It's 4 am, but I couldn't go to sleep without blogging! Am I crazy?

Today was a good day with crazy weather. It started out cloudy, then rained, then turned to sleet, then to snow and when I went out this evening to a friend's house, it was that super cold windy snow! Definitely did not feel like the almost 60 degrees we had the day before!

I had a great day, though. First, I got to meet a friend that designs with me at my shop, Brownie Scraps. She lives in Salt Lake, and it was fun to go meet her and her two children! We had a lot of fun! Then I hung out with the family, ate yummy food and just enjoyed being together! Tonight when everyone was headed to bed, I went to my friend Angela's house where she was having a raw foods party! It was a blast, and I'm even more anxious than before to learn more! I have been intrigued by eating all raw food for about 7 years now, but have never managed to fully make the switch. It is coming slowly, but I gained a lot of new info and some yummy recipes tonight that I can't wait to try! After the party, several of us stayed and talked for hours and hours, but it was so fun! I haven't done that in years!

And now, I'm thinking I better go get a little sleep since the baby will probably be up in about 2 hours!

Big Brothers

2010-03-12T21:38:00.000-08:00

I couldn't help but having to snap this picture (it will be here tomorrow, I promise) of Sam and Noah walking. Sam isn't always Noah's favorite person. In fact, often when Noah sees Sam getting close he screams! There is a bit of history there, since Sam likes to hit Noah (softly, but still) and other not so nice things. However, lately, Sam loves to help Noah learn to walk. It is so precious and Noah thinks it is the best thing ever!

Every, Every Minute

2010-03-11T21:36:00.000-08:00

As I sit here, ready to write tonight, I struggle finding anything exciting that happened. Life can be funny that way sometimes. Lots of big things can happen in a few days that you feel like you can't write it all out. Then there are days that are just as normal and quiet and well, boring that you even wonder if you have anything worth writing about. Nothing exciting happened today. Nothing bad happened today. It was just a day.

And even though, most who may read this, could care less as to how many diapers I changed or how often I had to sweep the floor, or how quickly I tried to pull a naked Sam off the trampoline before any neighbors wondered what was going on, to me, it was a precious day. It was a day of normal living. It was waking up to the sounds of my 10 month old and hurrying to get others awake, breakfast on the table, hair done, shoes found, faces checked as some rush out the door. It was a day of doing laundry and washing dishes and wiping noses. It was a day of noise and play and fighting. It was a day of grocery shopping and music lessons and song practice for the upcoming Easter program. This is my life and nothing could represent the beauties in it, more than a simple day like today.

When I was in high school, I played the part of Emily in the Thornton Wilder play, "Our Town". I loved this play! I even used a monologue from it to audition in college. My very favorite lines in the play are at the very end. Emily has just died while in child birth and she gets to go back for just one day. It was an ordinary day, nothing special about it at all, and yet at the end, she is overwhelmed by the memory and the specialness of it all.

Here, at this point in my life, when I feel that I can barely catch my breath somedays, I find joy and sadness in the every day. Even the monotony of days goes way too quickly. And I find myself, tonight, remembering Emily's words at the end of the play, "Do any human beings ever realize life while they live it?--every, every minute"

Tired

2010-03-10T22:17:00.000-08:00

I have no idea why, but I have been so tired all week. I just feel like I'm dragging. As a result, we didn't do much today. I did some cleaning, but mostly tried to rest. Rest isn't exactly easy with six kids and a hubby out of town! But, I'm off to bed now, and hopefully tomorrow will be better! I will catch up the pictures tomorrow. I have them all taken and even most of them uploaded, I just need to resize and post!

Quiet Ordinary Day

2010-03-09T22:38:00.000-08:00

It was kind of nice to have a quiet day. I didn't have to go anywhere outside of our little section of the world and it felt like a normal day. I have enjoyed seeing family and all the fun and activities, but it was nice to just sort of exist today!

Sam is still enjoying the trampoline and sneaks out there at every opportunity. The other children are enjoying it as well, so its very nice! This evening I was able to go to a church party and it was so fun. I just love the women in our ward and have so many wonderful friends!

My Cutie

2010-03-08T21:40:00.000-08:00

I just love this picture of Noah! I took this today while we were out and visiting the dinosaur museum with cousins! We had so much fun, even though it was pretty crazy! We had five adults and 8 children under the age of 5! Yeah, definitely crazy!!! We only lost Sam once though, so that is a huge bonus in my book!

Things have improved so much with my little guy. Since taking him off all dairy and wheat, he has cleared up and has actually gained a couple of pounds. I'm so excited by this! There is nothing worse than worrying about your baby!

The trampoline is still paying off, big time! That is the only thing Sam wants to do. In fact, as I got him ready for bed tonight, I asked him if he was excited to go to school tomorrow (normally he ADORES school). Tonight he said, "no bus (meaning riding the bus to school and attending school), boo (food) and bump bump (jump jump). So, its good to know he has his priorities in the right place!

Family

2010-03-07T21:18:00.000-08:00

Today we had a wonderful time with John's family. Everyone was there except for his sister, Merri's husband who couldn't get off work back in Florida! But other than that, everyone was present and accounted for! It was fabulous! 10 adults and all 12 of the grandchildren (1/2 of whom are mine!) were crowded around tables set up in the dining room and living room! It was crazy and loud and hectic and complete bliss! We don't get to see some of the family very often, so it was wonderful to catch up and see all the cousins in action! My nieces, Morgan and Ashley are 14 and 12 and live in Las Vegas. They are both preparing to do a production of Beauty and the Beast, just like Chipper! It was fun to watch them bounce lines off each other! Noah was in heaven, just bouncing from one person to another. He wasn't shy a bit! The weather was beautiful and we even gathered outside for some pictures! It was a very nice day!

Tears

2010-03-06T20:44:00.000-08:00

I will post the picture lately, but I am worn out tonight from many many tears.

I have often felt cursed, in my life, for how close to the surface my emotions are. I can cry at commercials! Today was one of those days that I wished I could have held everything inside and not shed a tear. As we said goodbye to Grandma and laid her earthly body to rest, I couldn't control the flood of emotions and the waterfall of memories. At moments, it was a bit too much to process and I had to remind myself to breathe. Don't get me wrong, I am so thankful that she is no longer suffering, and I know that she is where she needs to be. I know she lived an incredible life-the type we all dream of living. It was just that I remembered every kind thing she ever did for me, the squishy hugs she was so good at, and the amazing amounts of love she had for her family and everyone around her. For just a moment, I wished I could pause time and rewind. Not that I wanted to go back a few days and see her one more time. I wanted to go back through the years and relive all the moments. Life is beautiful and heart wrenching at the same time. Each day comes and goes and there is nothing we can do to change that. And no matter how hard we try to cherish it and hold on to it, it still slips on by. And with that, new generations are born and old generations must pass by. At one point, just like me, she wrestled with 6 children and the daily chores that needed to be done. She held them and kissed them and poured all the love into that job, just as I try to do each day. She watched them each go away to school, get married, have children and watched them grow. She attended all the important events, held the new babies, kissed the toddlers and watched each day of life come and go. I'm sure it all felt like a matter of moments, as she prepared to end her life here. I guess part of my tears today were not only for my deep love for her, but also an appreciation for the life she lived and in part, my tears were for me, knowing that I too must pass through the trials she did and in the end leave it all behind. I'm thankful to know and believe with all my heart that this life is not the end. I cling to that faith as I feel that life is just a big whirlwind, going way too fast!

I will miss her so much. Even today, I expected her to walk in and brighten the room with her smile. But, I will always hold her dear. And I will work to live my life like she did and look forward to meeting her again.

Snow, Snow and More Snow

2010-03-05T21:46:00.000-08:00

I finally get to blog about snow! Yay! We actually had a real snow storm today! It was beautiful! And it was the perfect now. Almost a foot, but not cold outside and most had melted by night! The roads weren't bad, but it was that perfect snowman building snow! Of course, the fact that it is March means that I couldn't build a snowman! Heavens no. Those are for December and January! I build the Easter Bunny!