Dear Jakey,

Mommy has been struggling. I knew this would be hard but words can never do justice to the incredible heartbreak I feel. I won’t even bother to try to explain it. I almost feel like you are mad too. And I get it. We try to make everything feel better by saying you aren’t having anymore seizures or femur breaks or surgeries or whatever. But I suspect you would take it all back to hang out with us. Just the same way I would want you to endure all of that so you could be with us. Our collective anger has been raising holy hell on my body. And while I have never known such severe pain before I would take it forever if I could somehow get you back. Because everything is just not the same without you.

I keep trying to stay positive. And thank God for Ethan because at least I have to fake it when he is around. But he knows it sucks without you too. We got to the North Pole yesterday and as we got out of the car the first thing he said was I wish Jakey was here. Everything I said before about it almost being a gift so that we could do things we couldn’t have done before was a crock. We all wanted you there and it was not the same without you. We are supposed to be a family of four doing stuff and not a family of three. It doesn’t feel right.

I am sitting here this morning Jakey, feeling physically better but more alone than ever. Daddy went to go get checks and Ethan hasn’t gotten up. This was our time. And you are the only one who this time belongs to. I am trying so hard to be positive. I feel like I (and Daddy) got you boys through so much stuff before and we need to do it again but I don’t know how. Mrs. Somoza told us that Ethan said his heart hurts. We need to be strong so you don’t feel bad or sad for leaving and we need to make Ethan feel okay too.

When we saw you on Friday morning, it was so peaceful at the cemetery and for the first time we noticed so many birds. I thought of Spunky’s poem that she sent me and read to you. And then the coolest thing happened – daddy started whistling and one of the birds answered. They went back and forth so many times. It was awesome. And it was just like when you were at Children’s for all those months – every night daddy would make sounds at you and you would answer. We have the videos to prove it. I will choose to believe that was you communicating with us. I will try to stay positive for you, Ethan and Daddy but I will live out all my days until I see you again completely heartbroken.

So much love,