Dear Jakey,

You know how sometimes people look at us like they feel sorry for us? I wonder how this makes you feel. I know it generally pisses me off. But I tend to think you have more grace and patience than me so you probably handle it better. It takes me a while to remember what I know to be true and that is – that most people are good and kind. Most just don’t know how to react to a 4 year old that isn’t running around and playing and all that stuff your brother does. Most people mean well but don’t know what to say. And that is fine. I don’t know what to say. Other than, I love you and as much as I wish things were different for you so that you could run and play soccer and learn how to do monkey bars and ride a bike and fly a kite and all those good things – I have accepted where we are and I know you have too.

When you were first in the hospital – at Baystate, before we even made it to Children’s and we were sitting in the ER having no idea what was going on – Daddy said to me that this was a sign that we needed to slow down. I think of that often because it so many ways it was true. Before you got sick, life was a lot different and you were probably too young to remember. We did lots of things your first 8 months. When you were only two months old we moved from Boston to Saratoga Springs. When you were 5 months we went to Toronto to watch G-Pa give his big speech in front of thousands of people. You were such a good baby. When you were six months old we went to Buenos Aires to surprise G-Pa for his birthday and you were quite fond of the latin ladies. You didn’t fuss at all and flirted with everyone. Life was good. The thing is, it still is. It is just a different kind of good. We may not take you to see all kinds of new places but we do get to do a lot. We hope that you enjoy what we do and that you feel included. Sometimes I feel like I neglect you and that makes me sad. But I try. I think you know that.

Anyways, we have slowed down. And it is for the better. We really understand what is important and it is not in the trips or in anything else – it is in our family of four and the people we share you with. It is in Ethan who told me the other night that you were his very, very, very best friend (although Willie is his best friend out of those that can walk!). It is in Lilah who without prompting started singing to you one day. It is in Logan who greets you at school by announcing that “Jake’s here!!”. It is in all the moments that we know people care and it is in us making the most of everything we have. And in remembering to appreciate each moment.

I love you my little peanut. Time to go snuggle.