During our search for answers as to what was causing Kaleb’s developmental delay we never considered that “whatever” it was would be fatal…five years ago today it was confirmed. Kaleb was officially diagnosed with Sandhoff’s Disease and the advice we were given was to “take him home and give him all the love you can”. That goes without saying. As most people have, I have had some pretty dark days in my lifetime, times where I’ve felt like I’d never be able to crawl out of the black pit from which I had somehow fallen into, but for the first time in my life, I felt hopeless – it’s a terrible feeling.
We were also told that due to the disease progression, at his then 18 months of age that he would probably not live past his second birthday. In the beginning, because I didn’t fully understand how this disease worked, every time I put him down I was afraid he’d lose some kind of ability/function. It took me some time to realize that it wasn’t going to happen in a second but then I would start thinking, it’s been a few days since I’ve seen him roll over, or it’s been awhile since I last heard him cry. It was hard to learn how to live in the moment, when I constantly worried that this moment would be our last. I was afraid to sleep because I didn’t know if he’d still be alive in the morning when I woke up. I didn’t want to go anywhere without him afraid that when I got home, he’d be gone. In one breath I would gladly go back to living that life yet at the same time, I’m grateful that Kaleb is finally at peace.
As I write this today, I’m thinking of the families who have recently received this awful diagnosis…totally understanding and sympathizing with the terror they are feeling, with the heartache they are enduring and will have to endure for the rest of their lives…and I grieve for the four families who have had to say good-bye to their precious children in the last couple of weeks.
Diagnosis day was the first day of our changed lives. We will never be the people we were pre-diagnosis, but I can say - because of Kaleb – we are better people. We love you little man and miss you every day!