Dear Jake,

I love you. I hate that you have to work so hard to stay alive and to participate in life. I started reading another mommy’s book last night about a little boy who had a leukodystrophy – the same group of diseases we tested you for last week. His name was Hunter and when mommy and daddy saw his mommy and daddy we knew there was something similar. He had a big wheelchair like you, and couldn’t move too much or hold his head up either. He also didn’t smile or talk. BUT his parents knew he was strong and a fighter and knew what he needed. They understood him and loved him. It was nice to finally find someone who really believes what we know to be true – that just because you look like you might be out of it or sleepy, you are not. You are doing your absolute best to stay alive, fight the fight and be happy. We know it, they knew it about Hunter and I want to make sure you know that we know!

Hunter’s mom used to write a lot about what was happening with her family. I always said I would but all these years have passed and I haven’t. She also wrote letters to Hunter and as we were driving home from school today it occured to me that I should be doing the same thing. So here, it goes, no more excuses – letters of all sorts will follow. Letters about the past, letters about the future, letters about your family, letters about Ethan, all kinds of thing. And as we collect them, I will read them to you so that you know how important you are and you can remember all the things we have done together. I love you little buddy.