"Everything always works out in the end. And if it doesn't, then it's not the end."
Well, what can I say? What a week. A long, and difficult week. On Tuesday, we arrived at Sick Kids' for our "routine" appointment with the Orthopaedic Specialist to check on Isaac's back. We learned, very surprisingly, that Isaac's Kyphosis, or curvature of the spine, now requires him to be in a brace. And not just a regular back brace. This brace would cover him from neck to waist, front and back, and is a hard-plastic brace. It would prevent him from bending or twisting and would be required to be worn for 23 hours/day for many years.
We were quickly sent downstairs to have the mould made for his brace. Isaac was a trooper as they covered his entire body with plaster to make the mould. Being in a full-body cast certainly didn't take away his sense of humour! But, It was a very upsetting moment and day for us.
We had many conflicting emotions and wondered how we could possibly do this to our boy? How would this affect his quality of life? If he already has a shortened life-span, is this the best course of action? I want my child to have the happiest years that he can, and putting him in a hard-shelled, itchy, hot, and uncomfortable brace for the rest of his life doesn't seem to be something that is going to make him happy. And how will kids at school treat him? And strangers? Will this automatically change the person that he is?
During the last few, difficult days, I sent many emails back and forth to a writer-friend of mine. I told him that I was scared, which I truly am. He asked me what I was afraid of and my response was that I was afraid to live my life without my son. He responded very quickly and very simply. But his response picked me up and gave me the bit of strength that I needed to figure things out. He wrote "Don't worry. Everything always works out in the end. And if it doesn't, then it's not the end."
Anyhow, since Tuesday, we've been doing some digging, talking to other doctors, and doing a lot of research about this. Basically, we've realized that this course of treatment might not be the most effective.
After a long week, we have decided to wait 6 months and re-evaluate the situation at that time and we just received an email from our Dr. supporting our decision. You can never go wrong by putting things off. We'll see just how true this turns out to be in April. Thank you to everyone that has offered your support and words of wisdom.
On another note, as United Way donation time kicks into full gear, I just wanted to let perspective donors know that they can request that their UW donation go to The Isaac Foundation.
Simply write our charitable number in the "other charity" portion of your donation form and your donation will make it to our organization, through the United Way. There have been many generous people and organizations taking this approach and we truly appreciate it.
Our charitable number is 8069 300 79 RR0001.
I hope everyone is well. Please check out our website for our latest fundraising event, "Cuts For Isaac!" You can now order The Isaac Foundation Apparel from our website as well.
The Isaac Foundation