Another Milestone

I’ve been meaning to write about Stella’s birthday for a couple of weeks now. I’m not a writer. My words often seem so inadequate. In the weeks leading up to the big day I was also struggling. Lots of tears. Very emotional. Just two years ago, we weren’t sure we would even see this day.

With all this up and down it was very difficult to find the words. And even more difficult to find the right ones. I’m still not convince but I know that this blog is as much for Myles and I as it is for Stella. And we want it to be real. And most of the time our life IS smiles, and bright eyes, and singing and dancing and having fun. But sometimes it’s not. And sometimes it’s really not.

I was consumed with how unfair this is all is. For Stella. For Oliver. For us. I agonized over how naive we could have been. And I kept reliving the day of her diagnosis over and over again. How the dark room seemed to get even darker. How all the sound seemed to fade away and how the air seemed to get so thick I could barely breath. “take her home and love her”

And we do. It consumes us sometimes that we aren’t doing enough, yet doing too much. ??? What is best for her? For us? Long term? Short term? Its exhausting.

But she’s SO amazing and when shes’ smiling or laughing at you, you forget all that. And you think wow. This kid is perfect. And then it creeps in again. Almost perfect. Except in one very important way.

And as these perfect moments happen I can’t help myself from thinking. Remember this. Every detail. Someday that may be all you have. And with every picture of her I think cherish this. Archive this. Someday it may be all we have. And then I’m crying again.

People often ask us how we do this. I don’t have the answer. We just do. Because we have to. Because we want to. For Stella. For Oliver. For us. Because letting SMA win anymore than it already has would be even more of a shame. And losing any more would be even more unbearable.

And as we celebrated April 21st, with lots of smiles, and a few tears, we are more in love with Stella than we ever thought possible. And it grows and grows everyday. We thank her for making us parents and for making us so proud. She truly is our star.


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