Easy E

Dear Jakey,

I don’t even know what to write about lately because I am still in such a state of shock and devastation over you being gone. I can’t really explain and am frankly sick of trying to make sense of it. All I know is that nothing gets easier and sometimes it is just so hard to be nice in a world without you in it. But I don’t want to spend my time writing to you thinking about the things I already think of all the time. So this letter is going to be all about your brother.

From the minute you were born, he loved you. I can close my eyes and picture him coming to see you in the hospital just hours after you were born. He instantly wanted to be on top of you. And while it wasn’t as instant for you, it wasn’t long before you wanted to be just like your big bro. I can remember those early days so vividly. Ethan was only 15 months old and you were just weeks old and I remember figuring out how to be a mommy of two. Our life in Boston just seems so distant. And then we moved here. I remember Ethan wanting you to crawl and you wanting to please him. And how mobile you were so early. You just wanted to keep up with Ethan and Ethan just was all about you.

And when you got sick, Ethan really didn’t blink an eye. He just adapted. And that might just be the best thing about your brother – his ability to adapt to whatever is going on. And I remember him working through understanding you being sick and being different from  other kids. I remember him wondering why baby Dean was walking when he was younger than you. And then even baby Alex and baby Daniel. It took those things for him to really understand and sometimes I think he was jealous because he missed his little brother who could play with him. But mostly, he knew you loved him and he loved you. And now he really just misses you so much.

In just the last two days we have talked about the following:

1. He asked me the other morning who I would rather be the boy who died or the man who killed him. (What you have missed in the last 15+ months is that Ethan is all about asking those type of questions that are “which would you rather”). He was talking about Trayvon Martin and George Zimmerman. I paused because he caught me off guard so in that pause he answered his own question. He’d rather be Trayvon because it means he’d get to be with you.  And the funny thing is I know exactly what he means. I can’t help but agree with him.
2. Last night he called down to me after I put him to bed to get him your “Believe the Hype” shirt. He wanted it in his bed. It has been in my bed since you died but I let him take it to his. He is just grasping at whatever it is we have left.

I know that in his own way he is struggling to keep trying to make sense of it all. And it gets more complicated as we plan and prepare for the fundraiser. Your birthday will be here before we know it and you will be 6. And I would give anything to celebrate with you.

Love,

Mommy

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life and death

Dear Jakey,

Again, too many days. But Daddy and I were in Jamaica ~ at the Rockhouse for a few days and I know you understand. It felt great to be back there and I know you, more than anyone, is connected to that spot. You were so there with us and around us. I made you ever present in the birds I had never noticed in our earlier visits and in the stillness and quiet. I took pictures and in one there was a fog, I feel like it was you letting me know you were there. I don’t even care if it sounds crazy but there is little doubt in my mind that you were there with us.

On the way down we watched The Descendents. I have been having a harder time lately with TV and movies because I never really noticed before how there is always death in it. And every time I watch someone die, even if it is on TV, it makes me really remember that you are gone. Forever. Anyways, it was a decent enough movie but there is death and by the end I couldn’t take it and found myself sitting there crying. And it got me thinking again about how I feel like an alien sometimes – even watching We Bought a Zoo had my crying and emotional and the stupid movie New Year’s Eve which we watched on the way home made me cry. Why does every movie, regardless of type, have someone die? Whatever happened to stupid funny movies. And it may be why I go back to my old favorites ~ Old School, Zoolander, the Zohan ~ although I am nervous that there is something I don’t remember in each that might make me cry too.

Today was a tough day. I made a trip to a JHFH kid to pick up some stuff we had loaned him and some stuff they were donating for the equipment exchange. And in standing in the house I felt for the first time in a long time the fear and the heartache that having a kid like you makes you feel. And I watched his grandma jump when the heart rate monitor went off and how she checked him and how scared she was. And I was sort of jealous. Because as hard as that life is, it is still life. And I miss your life, our life. And then I was also broken hearted because I could hear the fear in her voice that he was getting worse and I know that worry, different than normal parent’s worry, that there is very real possibility that he may die. And that just sucks. And I hate that there are so many people worrying and fighting and so many kids stuck in bodies that don’t work right.

I miss you buddy. Every single piece of you and every single minute of our life.

Love,

Mommy

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State of the Union

Dear Jakey,

Again, more time has passed than I like. And I sometimes think you get annoyed when I don’t write regularly. Maybe annoyed is the wrong word but I feel like you are all around telling me to write. And things are happening all around me that are so wound up in you. So, in no particular order:

1. Last night Ethan really missed you. He was sadder than I have seen him in a long time and slept clutching your shirt. Sometimes I forget how hard it is on him too. And how strong he always tries to be so not to make me or Daddy sad. But we all miss you so much. He is reading this over my shoulder. Hard to believe he can read now – do you know how big he is getting? And he thanked me for telling you that he missed you so much.
2. On Saturday we went to Confections in Chocolate. It is always a little difficult to be at EFNENY events just because your are so connected to it all. And it is totally bittersweet. We met all these great people because of you and now we are all still here but you are not. So it can be a little strange. Anyways, a boy named Joey was chosen as one of the winning kids. You met him at the strolls. Anyways, he was so brave and so great. His mom talked about Jake’s Help From Heaven because we helped them. And it really was such a nice surprise for us. And while it goes without saying that we would rather have you here it felt really good to have you be a part of it.
3. Ethan has his first grade music show last night. Daddy was in FL for work and it felt so weird just going over to Lake Ave with Ethan. It was one of those moments that just struck me about how “easy” life is now. Easy in what I have to do, not easy to deal with. You not being there filled the room.
4. this is from ethan! I got two stripes! in tae kwon do!
5. Can you believe Ethan can type and write now? And how much he likes exclamation points?
6. The cardinal has been everywhere. Yesterday Ethan and I watched it fly around for a long time with another bird. We were trying to figure out who your buddy was.
7. I can’t believe it has been over 15 months since I have held you. I miss you so very much. It never gets better. It goes on but it never gets better.

Love,

Mommy

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normal

Dear Jakey,

I know that life won’t ever be normal again. I know and accept it. I know that we are supposed to get used to this “new normal” that you read about in books about loss and we heard all about in WaveRiders. And for the most part I get it. I get that the life we live now is this new normal. Our routines, as different as they were before you left, have become normal. Going to TKD instead of staying home with you is now very normal. Not having Cait after school to play with you while I hung out with Ethan has become normal. Putting Ethan to bed instead of giving you your meds and laying down with you is now normal. And I sometimes start to think that we are used to this new normal and then something comes up that reminds me that I am far from normal. And it makes me wonder if I will ever be normal again. There are certain things that I just can’t do yet or can’t even think about. There are certain risks, that may not even be realistic risks, that I am unwilling to take. And there are things that I know don’t really make sense or are even hypocritical – like the way that I won’t let Ethan play football because I am terrified of a head injury yet I let him ski or ride around on his skateboard. The way I let him have some playdates but not others. The incredible, at times crippling fear of losing him. I just can’t lose him too. Jakey, losing you is the most indescribable, horrible thing and the mere thought of anything happening to your brother can make me sick to my stomach, unable to sleep and a complete internal disaster. So I tell myself that it takes time. And maybe with time some things won’t terrify me. But I know that bad things happen and I know they can happen more than once. And at this point I can’t take any risks, even if they don’t make sense to anybody but me.

I miss you so much and I miss our real normal, which I guess is now our “old normal”. And I miss being normal.

Love,

Mommy

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sad thoughts

Dear Jakey,

It seems that all around me, or at least in this world that I know so well, there is so much death lately. And such hardships for little fighters. And Jakey, it sort of crushes me each time but I also can’t stop following the stories and the fights of other kids with such unusually tough and difficult battles. For so much of my life I lived without knowing much about what others endured. I lived in a bubble, and even worse, I thought because of the work I did in Boston and the people I surrounded myself with that I wasn’t in a bubbly. But the fact is that until you really see first hand how difficult life can be sometimes, you are sort of in a bubble. And until you read the stories of James or Liam or Charlie or Colden or Ashlyn and can relate to them first hand then it is just impossible to comprehend the fears and thoughts that other mommies and daddies have. And the real twisted part is that as I follow James’ journey, I think about you all the time. And as his mommy has to make some tough decisions that I didn’t make, I almost find myself jealous because he is still here. And you are not here. And I read about the kids who died – 3 in the last week- and while I never met them or their families there is this world of other families on facebook that I never really had when you were here. I just was too busy then to pay attention and know all I want to know is what they are trying and what their doctors say and I wonder if any of it would have helped you. I just miss you so much. And I would do absolutely anything to have just one more minute with you.

Love,

Mommy

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Snow Day

Dear Jakey,

Today, March 1st, was the first snow day of the year. Ethan and I went out and built snowmen. And I realized it was really the first time I did that kind of stuff with him. Last year even though we had so much snow I didn’t do much of it – I went sledding with him once or twice but never really had a morning like we had today. So we built a family of snowmen – the four of us. And Ethan wanted to have you between me and him. And while we were making the four of us it felt sort of surreal because I so want to be a family of four again yet if we were I wouldn’t be outside building snowmen with Ethan. And it reminded me of the days when Ethan would go out and play and I would sit with you and run back and forth between you both. But what I missed most was the snugglefests of days past. And I’m not the only one – on the way to visit you the other morning, Ethan quietly said “I can’t wait until we are all Heaven with Jakey”.

Love,

Mommy

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