Thursday, January 20, 2011

Praying...Thinking...NO I'm Praying!!!

We are 7 weeks into this whole process and tomorrow is our return trip to the doctor via ambulance...again! Sam is still only comfortable in the wheel chair for about 45 minutes at a time and as you can imagine transferring a 106 lb. child in a full body brace with an extension rod between his thighs...not the easiest thing to do, so we'll transport him safely and comfortably by ambulance. At the same time I am fulfilling one of Danielle's curiosities, what is it like to ride in an ambulance?? She will be coming with us since she has no school tomorrow. I remember when I once had that same curiosity...long before Sam was born.

Yesterday and last night were not good times. Sam ate something (just because it says it's gluten free doesn't mean that it is free of everything else that affects Sam's system) and he got diarrhea...yeah think about a body brace....stuck in bed...low tone. Are you feeling my pain??? Although I have become quite adept at juggling the bedpan, urinal, wipes and singing favorite theme songs from Sam's shows...this day challenged my muscles, my stamina, my gag reflex, my already questionable back but most of all my already hurting heart for yet another thing Sam had to endure. Yeah my back hurt, he tripled the laundry and it wasn't pleasant but Sam had more physical pain, his very sensitive skin was hurting, he wasn't in control of what was happening and that bothered him and he had to rely completely on me. I thought a nap in the afternoon would be good for Sam, little did I know that the nap would haunt me later.

Sam settled down to go to bed at 9:00, however I woke up and heard him at 10:00 but thought he was just talking in his sleep. Then I heard him at 11:00, 12:00 and finally at 1:30 I decided to do a more thorough check. I crept around to the side he can't see me and watched and as I watched my heart sank. Sam had been spending all that time stimming. For those of you who don't know what stimming is a repetitive action that sends endorphins to the brain telling the child to continue and that it feels good (kinda like cocaine) but in Sam's case it shuts down his interactions of what's going on around him, he withdraws and he enters into his own little world. Most people think of stimming behaviors when they think of autistic children, repetitive hand flapping or repetitive noises. Sam has many different stims from watching the wheels on a car turn, to playing with images in his peripheral vision (looking out the sides of his eyes), replaying favorite TV shows or movies in his head, hand play close to his eyes...and the list goes on. I don't know if Sam's stimming is increased due to his brain injury and I'm not going to debate that some people feel stimming is needed to calm a child. Maybe that is true for some children but in the case of Sam it has very negative effects, it isn't calming to Sam otherwise he would have stimmed himself to sleep but it was almost as if he couldn't stop and although he was exhausted he just kept doing it. I had to sit with him, put his hands under the covers and wait for him to fall asleep and still the wanting to stim was so strong that he attempted it a few times but I quickly redirected him and he finally fell asleep at about 3:00 a.m.

Sam's stimming was very strong before he learned to walk. He was bored and it gave his mind something to do but he communicated less and less. When Sam began to walk and we addressed his stimming he became more interactive, playful and wanting to communicate. We had made so many gains and then I see a night like last night and I know I have to work harder with Sam to keep him engaged and learning and communicating. My prayer was more of a desperate plea than a prayer.

As I sat waiting for Sam to fall asleep my mind again decided to think about his upcoming doctor's appointment. Again, so many questions fly through my head. Will he be able to get out of the brace? How long will it take him to learn to walk again? Will he have more pain and will I know? How will I know the difference between pain and behavior? How do I explain the weight bearing precautions to Sam? How will I get Sam to therapy? When and how will he go back to school? How do I explain all this to Sam??...and the questions keep coming...and I begin to pray.

Lord, I don't know if I have ever fully understood or even want to understand the cognitive ramifications that surround Sam because in my heart I have always felt I could take the time...I can figure out how he learns...I can teach him...he will learn and understand but it will be at his own pace. It will be okay. I wanted to believe that the physical issues from low tone and his brain injury were addressed and once he was active and mobile he would stay that way...and then along came hip dysplasia and perthes.

I know Lord, one day at a time, don't over think it, worry is wasted time and energy....but I am really feeling the limitations of being human, of being just one person with what feels like the weight of the world on my shoulders. I'm not super human, I don't have special powers but I want with all my heart and soul to help Sam be happy, healthy and lead a productive, satisfying life.

But wait...then I'm a wife and mom of two other children. I'm praying for balance Lord, but not just balance but grace...and compassion...and joy...and more love...

You remind me...
Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.1 Corinthians 13:4-7

Maybe...what I'm really lacking is trust?? Again I demonstrate that I am only human and by being human I am weak. Sam isn't worried, Sam is sleeping and he will face tomorrow as he does every day...with a smile...Sam's faith, trust and love is unconditional. Tonight I trust that you have given me the knowledge, persistence, perseverance, courage, commitment, tenacity, strength, grace, love and compassion that I need and will need to continue this journey. By the grace of God, I'm ready!


  1. It is overwhelming sometimes and the worry seem immense. I have not been in your exact situation, but I have dealt with long hospitalizations with cystic fibrosis (which might be coming up soon, we call it 'club Med').

    I get overwhelmed too and it is ok. It is your job as a mom to be worried, and you do not need to make apologies. I would not expect anything less. In fact, if you did not worry, then something would be wrong.

    But do know one thing from someone who can see you from outside the confines of that worry. You are stronger than you believe.

    No matter what happens.

    Praying for you too Sue. Hang in there mom.

    In the words of my military hubby...
    Keep calm, carry on. =0)

  2. This too shall pass. It may pass like a kidney stone, but it will pass. One breath at a time, one step at a time, one day at a time...

    It will get better!