Wednesday, September 29, 2010

Falling Off The Edge!!!

When we received Sam's diagnosis last week, I felt like I had just fallen off a cliff...but I grabbed on to a branch and was still hanging on...desperately. I emailed Sam's NACD evaluator Ellen Doman. Ellen is my friend and has served as my sounding board and reality check for many issues we have run into with Sam. She has seen so many children with Down syndrome that I knew she would give me solid advice. After I hit send....I waited for her email...all the time thinking to myself that Ellen is going to tell me that the doctor gave me bad advice and that there were other options. But when her email came in she told me the surgery was necessary and that it was important to find the best surgeon possible.

My one hand slipped off that branch!

I focused on getting a second opinion, researching Perthes, talking to anyone who knew anything about this disease. I had a friend research surgeons and specialists. I researched possible surgical procedures. I talked to colleagues and nurses who worked with the surgeons. I began to research the top anesthesiologist at Childrens. I need the best of the best....this is Sam we're talking about.

My mind focused on the 2nd opinion....maybe this doctor would tell me something different....maybe he would say it isn't Perthes and he doesn't need surgery. Maybe???

But today....was the 2nd appointment. Jeff went with me and the doctor again explained that Sam had Perthes and that his was in an advanced stage, much damage had already been done. He went on to say that this was a very rare disease, a bad situation and Sam was at a crisis point due to his age and what the X-ray was showing.

As the doctor continued to talk...I felt my grip loosen on the branch and I began to fall. I bounced from rock to rock as I thought about all the consequences of this surgery. How will Sam come out of anesthesia? What if he gets sick? How will he handle being in bed for 2 months? What do I do if he goes into respiratory distress? How will I bathe him and how will he go to the bathroom? What if he gets an infection? What if his immune system shuts down? How will he react to the medications needed? What will rehab look like for Sam? And on and on.....

When I hit rock bottom...I picked up the phone and called Children's Hospital to begin the surgical/anesthesia consults and to set up a date/time for the surgery. One step at a time, one step at a time. God help me!

Before my heart hurt for my entire mind and the depths of my soul hurts for Sam. Deep breath, deep breath...we can do this. Sam's favorite line when he accomplishes something is "We did it!" I will hear that line the end of this journey...when Sam walks, runs, swims and rides his bike again.

I wish I had a great quote or favorite passage to close out this post but instead I will just tell you to pray because that is what I will be doing.


  1. You and Sam will be in my thoughts and prayers as you navigate your ordeal. Hang in there - and stock up on video games and school work for those days in bed! Also, perhaps a couple dumbells or one of those stretchy things for arm muscle tone. It would give him something physical to do, at least.

  2. Ohh - what about a keyboard to play with or some other instruments?

  3. Dear Sue & Sam, my heart is with you both. But I have faith you will both weather the storm as you have been forced to in the past. And you will continue to serve as an inspiration to all of us. Please know we are all here for you.

    "The strongest oak tree of the forest is not the one that is protected from the storm and hidden from the sun. It is the one that stands in the open where it is compelled to struggle for its existence against the winds and the rains and the scorching sun."
    - Napoleon Hill