August 22

Today Stellan is 18 months old. I never got around to writing about Stellan’s first birthday, partly because I unfortunately didn’t have time, but I think mostly because it was filled with such conflicting emotion for me. My friend Becky reached out to me at the time to see how I was doing, since she felt similar emotions when her son Elijah turned one – a mix of, “Hooray! We made it!” combined with a lot of sadness because our little men couldn’t blow out candles or smash cake or really get what all the fuss was about.

So now he’s 18 months and he has made a great deal of progress, even if he still can’t blow out candles or effectively smash cake. He’s a hardworking little guy, his therapists are amazing and we’ve worked with him so much, the g-tube has enabled him to get the right amount of nutrition so he’s getting stronger and he’s happier. But of course the fact that he can’t really do, well ANYTHING is never far from my mind.

August 22 is extra hard for me because one year ago today we were up in Westchester for Stellan’s MRI. So it was a year ago on this day that we already knew something was quite wrong, we were still hopeful it wasn’t too bad or not correctable, and we were spending Stellan’s 6 month birthday getting him into a gown, sedating him, and putting him in a giant noisy machine to take pictures of his brain.

Obviously we know how that turned out.

So today – and this whole month really – has been one of very mixed emotions. It’s hard to believe it has only been a year that we’ve known about all of this. How much we’ve learned since then, how much we’ve been through, how much we still have to face, and how much we still may never know.



Same feelings for us, I understand all of your words. I want to believe in our children, they’re so beautiful! We are going an hard work mom!
Marta&Jacopo (from Italy)

Leave a Reply to martaCancel reply


email* (not published)