Wednesday, April 2, 2014

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.            

3 comments:

Lynn said...

" 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. "

So true! So profound! So scary for every mom. For every parent. Life.......and "letting go"......can be SOo painful sometimes.

Just know I "get it". Hugs. You are in my prayers.

Joseph Lowry Jr said...

Thanks for sharing this. You are wonderful parents and we have great respect for you and Justin. Hang in there!

Fred ... said...

We're praying for you. You're a good mother.