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Archive for June, 2012

mysterious ways

Dear Jakey,

Another kid died. And another family is enduring the hardest and most god awful thing that can happen to a family. The thing is that almost 19 months have passed and I find myself thinking about the day you died all the time. And I think about all the things I miss and all the things that are different. And I mostly want to hang out alone in my thoughts about you. And I just know that this family is embarking on a journey that just never ends and never gets better. 

I know that there aren’t more kids dying since you died but I am so much more aware of it all now. And through the kids on facebook that are still here fighting the fight you fought I am witness to so many families and kids around the country. Kiddos that look and fight like you. I sometimes wish I knew them when you were here because I learn about so many things through them – things that might have helped you or made your life more comfortable. 

Patrick died today. I don’t know much about him or even where he lived but I know he had seizures and I know his body tired out. His parents knew it was going to happen and had the last couple days at home with him. I wonder what that is like. We didn’t know you were dying. Would I have taken Ethan to bettie’s for a Samoa cupcake if I knew? Would we have gone to TKD?

And another little girl Caylee is struggling and her Mom had to decide whether to put her on a respirator or not. These are situations that are forever impossible to get over and I can’t get over. My heart breaks each time I follow a family yet I can’t stop following them. It is like my only connection to you and our life together. I hate that every day that passes brings me a day further from when I last held you. Sometimes I can believe the crap that tells me it is actually one day closer to seeing you but not lately. Lately I just want to think about you and miss you. 

Love,

Mommy

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life on earth

Dear Jakey,

There are so many different things I want to write about. So many different letters have been written in my head lately but none have made it out of my head. Unlike when you first died, things are just much more muted. It isn’t the raw emotion of early on just a constant fog. And I am starting to think that the fog will never lift.

As more time passes, I do believe more and more in your presence and while I appreciate the moments and symbols of you, I am just still so crushed that you are gone. Life just really has continued and I don’t really feel comfortable with it. Like in baseball, another season just finished today and it was just so different this year. I think last year I was still in a daze because I don’t remember the season as much. This year just seemed so different – I was at every game, in the dugout with the team. And it felt so strange to not be with you and making sure you were okay. And sometimes missing the game because I stayed home with you instead. I miss so much my time with you. And some people we meet and get to know, don’t really know about you and it is so hard.  A bunch of the team boys noticed my foot tattoo and a few of them asked who Jake was. And both Ethan and I tackled that pretty well – we told them about you. And while it was awkward it was fine. A few boys asked more on other times. And some of them knew you and knew you were gone. And I was remarkably okay with a lot of the questions from the kids. What became harder was when I was asked by another dad if we just had Ethan. I didn’t know how to answer. Early on I always said no and told them about you but then it was always hard to drop it on people that you died. Not hard on me but hard on them. So this time I just said yes and changed the subject. And it made me feel like crap. But making other people feel sad and awkward also feels like crap. And there is no real way to avoid it or to know how to handle it.

I spend a lot of time thinking about what life would be like with you still here. And it makes me sad to think that sometimes I can’t really imagine what we would be doing or what you would be doing. What would you be like as a 6 year old down here? The other week I spent some time with Tessa and it was so great for me. It brought me back to my days with you. When sometimes the best thing you can do in the day is snuggle and remember what is important. You were always a solid reminder of that for me and Tessa brought a lot of those thoughts back. And as much as I loved it, I did miss you even more.

I know that all I have now are the symbols of you and I feel pretty lucky to have that. You seem to make us all aware that you are still with us and I think we all appreciate it. Walking to see you on Father’s Day morning and seeing the cardinal fly in our path gave us all a little sigh of relief. And then to see you cruise around the backyard was pretty spectacular too. And yesterday at the Cousin’s weekend when out of nowhere a few lines of Jack Johnson’s song was on the speaker at Boston Bowl. And today when my Volvo turned 100,000 miles exactly when we got to you to say goodnight and there you were: a bright red cardinal! I love you so much buddy. And I miss you so even more.

Love,

Mommy

 

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Dear Jakey,

Not a lot has changed since I wrote you last. Although if at all possible, I feel like I just talk to you even more. Sometimes, I feel a little crazy because you truly are my sounding board for everything – and it can’t be an easy task particularly as I work towards being a somewhat kinder, gentler version of me with more patience to boot. It remains so difficult for me sometimes as I try to keep perspective. The loss of you has heightened so many emotions for me and it truly is that I just feel somethings so much more than I ever did. Or maybe I notice things I never noticed. I see good friends going through their own struggles and it leaves me so much more saddened than I ever remember being. I think knowing the quickness with which things can change has just forever damaged by ability to regulate emotion – and it sometimes makes me so much sadder about things and so much madder about things. I hate that people can walk away from people and things that matter.

Part of me also has a very selfish reason for missing you so much lately. I miss the downtime. I miss the excuse of you – which may sound awful but you know what I mean. I miss being able to justifiably say “no, I can’t” about things.  I miss the routine. I miss the comfort that came with making your food, feeding you every 3-4 hours and giving your meds. And taking you to MIPT and to yoga. And scheduling Xavier. I miss the direction my life had and the way everything else came second. And now I have a hard time regulating it all. I have a hard time being where I need to be and doing what I need to do because it all seems like it should still come second. And it becomes this obvious hole in my life that everything else is no longer second, it just is. And my first priority is gone. And there is just no way to replace it. To replace you.

I sometimes think you are everywhere around us. And I like that. I like that I feel you guide me and Ethan. But it is still so very hard because it just isn’t enough sometimes. Or most times. I miss you my little buddy.

Love,

Mommy

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