Monday, March 26, 2012

A Little Inspiration!!

Over the past few weeks I have been in research mode and caretaker mode. Researching more about Perthes, AVN and hip replacement along with looking at a better walker setup and a wheelchair that is light weight to help save my back and allow Sam to begin wheeling himself around. Caretaker mode continues because of Sam's pain issues and my other 2 children decided to throw in a few illnesses too. They hate to see me get bored.

Sam's medical issues, home program, schooling, therapies and doctor appointments can be overwhelming at times and I can get caught in the day to day routine of just getting through. Instead of focusing on the day, the now...I feel like I'm in auto-pilot and I'm getting him where he needs to go, administering supplements and medication, holding to the diet, checking off the program items but I'm lacking the passion and the intensity to make change happen. The house cleaning, laundry, meal making task and other basic life functions begin to nag at me. I'm tired, I'm frustrated and I begin to dwell on the challenges instead of working on the strengths. My attitude begins to turn...and I'm unhappy, sad at times and just so very, very tired.

But then along comes Sam with his Ipad and he begins to show me pictures of himself as a baby, our family vacations and roadtrips, the playground project, gatherings with friends and family... He goes on to show me the pictures of his homeschool projects, fun unit studies and then as quickly as he appeared he drifts off after he comes across his favorite Ipad motorcycle game. I watch him walk away with his Ipad on his walker tray and I have to smile. This little boy that struggles to hear and speak read me like a book, he heard my unspoken hurt and he took it upon himself to show me my blessings.

In my next couple of posts I want to share some of those blessings with you and I hope you will be as encouraged as Sam made me. As Sam and I looked back through his baby pictures I couldn't help but realize how far we have come. It's funny how a picture can take you back to a moment in time and your brain has the ability to visualize that moment as if it were happening right now. One of the pictures Sam showed me was his baptism picture. I remember standing in front of the church, how slippery Sam's little satin outfit was and how I was worried that he seemed to be getting sick again. We had just gotten out of the hospital the week before after Sam struggled with a respiratory virus. The evening of Sam's baptism was Jeff's Christmas party for work. I remember wanting to go and not wanting to go, part of me wanted to escape and just experience a normal evening out and part of me was worried about Sam and that feeling I had that he was not okay. This was one of the evenings that I learned you should always follow your gut. I will never forget the frantic call I got from my Mom as she asked us to come right home because Sam didn't seem right. She described him falling asleep and he seemed to stop breathing until she startled him. My parents left and I sat holding my newly baptized baby wondering why God would allow something like this to happen on his baptismal day. I didn't have much time to think about it because the episodes began to happen more frequently and I found myself rushing out the door and headed to Children's Hospital's ER. Sam was in trouble and my fears were confirmed when he was admitted to the ICU. Sam continued to have breathing issues and a tube was inserted in his nose to send a signal to the brain that he had another airway and he needed to use it. I remember sitting next to Sam's bed praying and then hearing a commotion out side of Sam's door. I looked up as they wheeled an older girl with Down syndrome past our room, she was coughing and having a hard time breathing. I remember that what I have to look forward to, is this what life with Sam will be like?

The doctor came in and began to review Sam's condition with me. I was tired, confused and more than a little scared and I remember trying so hard to focus on what he was saying. At first I thought he was just telling me about the delays common with a child with Down syndrome but then I realized he was telling me the delays I could expect with a child with a brain injury. He was telling me that Sam was going to have further delays, the words "may not walk" "may not talk" "right side weakness" "infant mentality" drifted past me as if he were talking about some other child. My eyes filled with tears as my heart screamed "Please be talking about some other child". He showed me the reflex difference in Sam's left leg compared to his right leg and his left arm compared to his right arm. I nodded but couldn't form any words. I heard the terms anoxia, aphasia, acquired traumatic brain injury, dysphagia, flaccid tone, hemiparesis and so many other terms I had never heard of. And all I could do was look at my baby, block out the doctor and tell Sam "You're going to be alright...we're going to be alright, Sam". "We will figure out how to do this." The doctor gave me the "I'm sorry" expression and left the room. As I played over in my mind what the doctor had said a seed of anger began to take root. I wasn't angry at God, I was angry at the predictions I had just heard of everything my child was not going to be able to do. How could they look at my perfectly imperfect baby...and know what he was going to be doing in 2, 3 or 5 years? Where did they get their crystal ball?

That little seed bloomed into a full blown...I will prove you wrong. With the help of NACD Sam bypassed most of their expectations by the time he was 3 years old and it was at that point that Jeff and I could dream again about Sam's future. Along Sam's 11 years of life I have met many a "nay sayer". Those who told me I was in denial, what I wanted and Sam's reality were two very different things. Sam's lack of speech was a direct indication of his inability to learn. They tried to scare me, deter me, intimidate me and request that I lower my expectations. I don't believe in testing, I believe in observing to determine where a child is at. I don't believe that Sam can't learn something or do something but instead his failure is a direct reflection on my inability to figure out how he needs to do something or how to teach him. Sam learns differently and the process of figuring out how Sam learns is my greatest challenge.

I was just talking with a good friend about nutritional intervention and really this applies to any intervention. When Sam was little I so wanted to find that quick fix...that therapy, that program, that medication or supplement that was going to excel him, move him closer to normal and actually I wanted him to surpass normal. I wanted him to be that super star kid with Down syndrome that everybody reads about and is amazed by. But our path had taken some very different turns starting with the dual diagnosis of Down syndrome and brain injury. Then we added his hearing issues and now a physical issue. Sam's journey fell off the super star path and instead we found ourselves on the slow and steady path. I often think of Sam's journey like the tortoise and the hare story. I was so hoping for the quickness and ability of that hare but instead I found myself in the role of the tortoise. Another of my favorite stories that I referenced on my blog was the Fern and the Bamboo. Check out and read that blog post for further inspiration. Sam is like the bamboo not quick to grow or sprout but slowly working on a strong root system that will allow him to exceed our expectations.

But the inspiration I want you to take away from this to never give up. It would have been easy for me to throw in the towel after any one of the many diagnosis Sam has received. It would have been easy to give up when Sam couldn't take the Nutrivene supplement or he didn't react well to the Changing Minds Foundation protocol or I didn't see huge changes with the addition of his diet or hearing aid. It would have been easy to give up when Sam didn't excel like some of the other children on NACD's client list. Each of our children is very different and their response to intervention is very different. Sam has taught me time and time again that his course is slow and steady and he and only he will determine the pace. The interventions we have kept are those that we see the slow and steady progress. Would I love jumps in Sam's development, would I love to see Sam not have any more diagnosis/labels added to his extensive list...oh heck yeah. But what I want you to take away from this post...what I want you to think to push on, move forward and never ever give up. I view Sam as a diamond in the rough and we are slowly chipping away at the challenges that keep him from shining or reaching his full potential. And even when I feel I've been given a butter knife instead of a chisel I'm going to just keep chipping away. Good night everyone!


  1. Great post, I have felt the same way at times. Thank you for the inspiration. Love reading your Blog.

    1. Thanks Heidi and give Joe a hug from me. Loved the rug you were making!!

  2. Hi Sue,
    I have to say, Have you ever seen the awesome butter sculptures some people have come up with? Keep on keeping on with your butter knife!
    Ruth in NZ

    1. Hi Ruth, That's exactly what I'm hoping for.