Dear Jakey,

It has been since Thursday since I wrote, I am sorry buddy. You get an extra long letter today. I have had so much to share with you but we didn’t go online the whole time we were in Florida. It was nice although I got a little anxious without officially writing you. It is funny because I always felt like this was how we communicated since I started writing you. It helped keep our thoughts together so while I still had my many conversations with you I have gotten so used to the record of it that it seemed weird not to really write.

Anyways, Jakey it has been an emotional few days. We are at the airport waiting to board our flight to JFK – returning from Disney. Disney was really quite magical – we had a wonderful time, although you were ever-present in our minds the entire time. For me, it seemed even more bittersweet than I imagined it would be. I was struck many times about how difficult the trip would have been with you. Our intention was to drive there with you this June after school got out. It would have been so hard buddy. And I don’t think you would have liked it. Ethan thinks you would but I am not so sure. It wasn’t even the crowds so much or that it isn’t handicapped accessible because it was totally accessible. It just would have been too much. There is no way to not have a long day there. And no way to make it so you could do it all. Even your brother crapped out at the end of the day – by 8:30 he was totally done. I know we would have done it and we would have made the best of it. It just was so clear to me throughout it all that our experience this weekend was so very different from what it would have been. When we were in Tomorrowland, I saw an older guy in a wheelchair similar to yours. He had some different issues but many similarities to you physically when you were here. And it made me cry – cry for everything that we don’t get to share together. And cry for what I used to complain the most about and now what I miss the most – that we don’t get to take care of you into your old age. You just left us too soon.

But Jakey, I know you must feel so happy for the joy your brother experienced these last few days. He had such a smile and a glow the whole time. And so did Daddy. We went swimming at the hotel. We went to the Magic Kingdom and rode lots of rides. Ethan drove me in the Tomorrowland Speedway and I laughed so hard my belly hurt. We ate lots of junk food, bought tons of Mickey stuff and saw a parade. We went to the Animal Kingdom. We went on a safari and saw rhinos and hippos and cheetahs and a huge sleeping lion. We saw flamingoes and wildebeests and giraffes. And all sorts of other animals. We went on a bicycle built for 3 and rode through the boardwalk. We went to Epcot and Ethan played in a park. We ate lots of food and got dessert. We watched fireworks on the boardwalk after playing silly boardwalk games. And Ethan loved it. And Daddy did too. And so did I.

But, Jakey, you were never far. Ethan probably talked about it most naturally. From sitting in JFK before we left and he saw a bird fly through the airport. To dinner in Disney’s version of Saratoga Springs where he noticed a “J for Jake” shaped french fry. And cried when Daddy ate it by accident. He even noticed a J shaped sprinkle from his ice cream and wouldn’t eat it. I randomly cried for you. It was hardest that first night at dinner when I really noticed how hard it would have been with you. And I didn’t cry because it would have been hard. I cried because it is weird to experience things without you, especially when they are things that I just don’t know how to really let go and love because it is all wrapped up in you being gone. But we did manage it Jakey. We went, had fun and Ethan wants to go back. I think we will go back for his birthday. It will be a new tradition.

And Jakey, so many people talk to me about how you were there – whether it is spirits, souls, birds or a little bit of everything. And that is fine. I get it. I believe it. But I am little tired of it. I can make myself believe it and I can try to find comfort in it but the reality is that we were there without you. At least that is how it is for me for now. Maybe I will feel differently later but as 3 months approaches tomorrow – all I am thinking about is how much I miss you. There is no happily ever after, there is no do over, there is no way to change it. And I think about people and I think about us. I think about the things I will never do or feel again. Like that sense of urgency about your food and meds. People always thought I was nutty and too controlling over it and that I should have let others do more. But it just goes to show how little people knew. But it doesn’t matter now – all that matters is that life is plugging away and Jakey, we miss you so much.

But Jakey, I am proud of us for going and for doing. I know you are too. On the plane this morning, Daddy and I watched a movie. In it a woman lost her brother. He died on a sunny day. She said she thinks of him and it every sunny day. And the guy said that he thought her brother liked that she thought of him so often. He made it a positive – there is always the flip side and I hope you know how very much we love you, miss you and think of you.

We picked out things for you too. We got a Mickey lantern for your grave. We’ll buy candles to put in each night. We also all rocked the Mickey ears. Daddy wasn’t so happy about walking around in them but he did it. And we bought you ones too. At first we didn’t but then it didn’t seem right to not have them for you. So we will bring them to your tree once we get it all cleaned up. They match your brothers and they glow in the dark. You would have looked so damn cute.

You are my hero little man. I miss you so much. XOXO

Love,

Mommy