Eating

We eat for all kinds of reasons. Whether it is a social activity or for survival eating is essential to life. 

If you know us at all you know that eating has been one of our biggest hurdles with Evan. This year has truly been a year of growth for him and us. In fact talking about it is hard for me, not because I don't want to talk about it but because it is so complex an issue. 

For the first month or so of this journey I talked with a counselor at the hospital almost daily because I was having such a hard time with everything. I was really looking forward to summer and having Evan with me full time again so I could hopefully discover more strategies and get Evan to develop acceptable innate eating habits that he has fought so hard against. 

Evan had an appointment with his dietician this week. It was the first appointment with the dietician that I didn't go into crying and walk out crying. In fact I am really happy with the place we have come to. We still have improvements to make but baby steps in a positive direction is enough to keep this mama happy. 

Now that summer is drawing to a close I would be lying if I said that I wasn't nervous. I hate that Evans school keeps him away all day as it is but now I have to let him leave and pray that the progress we have made in regards to eating will continue without me there. 

I am going to just hold on to the fact that, for now, I am doing a good job, and that for now things are improving. 

Great job Evan! He was pretty proud of himself for gaining weight.  

I love my kids so much that sometimes my heart actually hurts. I don't know any other way of saying it. Don't get me wrong there are definitely some times that I don't like them very much and then they will do something wonderful and all is forgiven again.

This morning I got to see Landon race in a kids spartan race. I was that loud and proud mama taking pictures from the sideline. I watched him run and complete obstacles with so much determination I cried. Literally I stood there on the sidelines crying. (I've always been a sap and I wear my mommy tears proudly!) 

It made my whole day to have him run up to me afterwards screaming with so much pride and excitement that he had placed 3rd in his age group. 

That enthusiasm is so much a part of him. Whether he is angry, happy, or sad he is enthusiastic about it. When that kid is joyful you want to be around to get just a little taste of the sunshine he exudes. 

I don't want to miss this

Most days lately end in exhaustion for me, but I am sitting in a hotel room tonight surrounded by the snores of my babies and I don't want to miss anything. Now that I know our family is complete I feel like time has sped up. I feel like I can't keep a hold on any of my kids and each one is growing up faster than I want them to. I don't want to miss this time when they are little and I am going to make the effort to at least write something every night so I can remember my life as it is, right now, in all the crazy beautiful chaos that surrounds me. So here is to resolutions and striving to keep them. I am not a writer but I am honored to try and keep up with my story.

My baby is 7!!!

Seven years ago a young girl changed my life forever.  She gave birth to a perfect baby boy and made me a mother.  I will never forget the moment we met our child.  I will never forget the moment he was placed in our arms forever.  

Evan's tummy mommy is a woman of courage and she has passed that courage on to her child.  He has so many challenges in his life and he has met them with all the courage in the world.  Evan is funny, witty, kind, and polite.  I'm in love with his long blond hair, which he requested to grow out.  Evan is very musically inclined and loves to sing.  He sings to himself in the car.  This year has been tricky and I am hoping that the next will be a little easier this coming school year.  Evan makes me laugh daily and I stand in constant awe of him. 

Happy Birthday Evan!  Happy Birthday my beautiful boy!  You are my life!  

Reflection

I am feeling very mixed feelings right now.  Even though I know that it is common for first time pregnancies to go past their due date I still can't help but feel a slight disappointment at going past that date the doctors gave me.  I am big, very few of my clothes fit, I am in constant pain, I am exhausted all the time, my heartburn is out of hand, and sometimes I literally can't move.  So it might be surprising when I say that each of these 9 days past my due date have been such a gift.  

I know that I am going to miss this experience so much.  I've felt so grateful to have this adventure.  I rub my belly all the time, trying to guess which body part I am caressing.  Lately, the evenings have been my favorite time of day because the baby is so active.  My stomach moves in waves and I just sit and stare at the wonder that my body has created.  The movements are powerful and I am desperate to remember how it feels to have this baby inside of me.

I stand in front of the mirror and stare at myself trying desperately to burn the image of my pregnant body into my memory.  It is still something so surreal and beautiful for me to see and I know that the second I give birth to this miracle that image will be gone.  I am proud of the 50 pounds I have gained . I am proud of the ability my body has to change according to the needs of my growing baby.    

I am now 9 days over due.  If this baby doesn't make its arrival before 10AM tomorrow morning it is to the hospital for me.  It has been a highly emotional day for me.  Knowing that these are the last hours that I will have this baby inside of me makes me really sad, and yet I am SO excited to meet this little one.  I can't wait to know if I will be holding a little boy or a little girl in my arms.

Ultimately I have to say that I am unbelievably grateful for this experience.  The pregnancy hasn't been the easiest or the most difficult I have ever heard of, but it has been my experience.  I treasure every moment I have experienced, good and bad.  It has all been worth it to be able to have this opportunity to bring this little life into the world.  I very much look forward to what tomorrow will bring.

Wish me luck.      

Growing Pains

Meet Evan.  Evan has Spinal Muscular Atrophy.  This disease poses many challenges to say the least.  At the beginning of the journey the learning curve is huge, and then it gets easier as most of the "routine" or the daily concerns become second nature.  The challenges don't disappear, but they just become a part of your every day life.  Life seems normal until a new challenge rears its ugly head and you feel like you are back to square one.

Right now I am back to square one and to be honest I don't know how well I am handling this current test.  Evan has never been a natural eater.  Since he developed a mind of his own he has fought food.  The problem is that medically he is not supposed to go more than 3-4 hours without eating something.  Evan's deteriorating muscles need the constant energy that the food provides and it is vital that his body gets the nourishment.

Evan had basically gotten to the point that he would not even really take a bite unless he was told to several times.  Meal times were brutal!  When he was sick he wouldn't even do that and he would go on a food strike, which is why we ultimately made the decision to give him a feeding tube.  We felt better knowing that we had a back up plan for those scary times.  We also felt he would have more energy to make it through school if he was being supplementally fed while he slept.

The feeding tube changed so much!!!!  Evan was starting to grow better, he had more energy at school, and he was all over handling his busier schedule better.  Life seemed to be improving by leaps and bounds.

Then Evan had a bad week.  It was a week that his school was short on EA's and there wasn't anyone there at lunch to remind him to eat or drink.  He didn't eat anything at school and totally broke down.  He was so affected and it continued for a couple of days.  I realized that we still had a problem.  After a phone call to a good friend (another SMA mommy), and too many tears to count I knew we needed to make a yet another change.

Our goal is always for our children to be as independent as they are able to be.  For years food has been the only thing that Evan was able to 100% control in his life and he was going to continue that, even if it meant battling for it.  After talking to the food specialists at the hospital we have formulated a plan that in my gut I know is the right move, but just might kill me in the process.  As was pointed out to me, Evan had never been allowed to feel the effects of hunger.  I would never let him get to that point because of the fact that he has SMA.

In a small nutshell, Evan is now 100% in charge of his eating.  Essentially we treat him almost like every other kid in the world and if he chooses not to eat in the time frame he has been given he is supposed to feel those negative effects of hunger.  We will supplement through the evening as needed, and he needs to follow his rules or there are consequences, but we are to be careful giving negative and positive feed back.

Evan is a very very smart kid and knows what he is supposed to do, but he is being very stubborn through this process.  I cry multiple times daily.  The hardest part is watching your child make choices that hurt him, and could potentially hurt him in very severe ways, all the while knowing that he needs to go through the process to become his best self.  I am glad that I have the support of the specialists at the hospital, friends, and my faith but it is still really hard.  I'm not sure I like growing pains.            

Happy Down Syndrome awareness day

It is Down Syndrome awareness day and I feel it only appropriate to pay a little tribute to a special man in my life.  Cameron's birth and journey to our family was a very special one filled with miracles.  I call him my perfect child because so far, that is exactly what he has been.  Even with all of his medical issues (and there were a lot!) Cameron was hands down my easiest baby.  Cameron has a fighting spirit.  He blew us all away with his strength through his heart surgery and other tests along the way and since.

Since getting a little older his personality has started to develop.  He knows what he wants and doesn't want but does not yet have the language to express it so we work on that daily.  He has worked very hard on his mobility.  He can't traditional crawl but he army crawls like a champion, sits, and pulls up to his knees beautifully.  His team of early intervention workers is amazing and really care about him and his ability to succeed.

Cameron exudes love!  He is a cuddle ball and happy all the time.  I love watching him play with his brothers and he thinks it is pretty darn awesome when they spend time with him.  His face always lights up even more when he is around them, but he is %100 a Mama's boy.  I am his favorite person on the planet!  This makes me so happy because the other two would prefer Dad to me.  I get it too.  Justin is fun fun fun all the time, he isn't the main disciplinarian because he is at work during the day and he lets them play video games with him on Saturday mornings.  Who wouldn't prefer hanging
out with someone that fun? Don't get me wrong they will always choose me when they are sick or hurt, but as far as every day stuff they want their Dad, but not my Cameron boy.  He doesn't even care what we are doing he just wants to be with me and I LOVE IT!

This beautiful child, who happens to have Down Syndrome has changed our life for good and not one of us could imagine life without him.      

Happy Down Syndrome awareness day!!!