Feeds:
Posts
Comments

Archive for March, 2011

pictures

Dear Jakey,

I sit here tonight doing some work on the couch and ended up on facebook putting up a picture from Ethan’s art show tonight. Somehow I clicked on the album to look at all the mobile pictures I have uploaded and as I was flipping through them it made me cry. Everything carries such weight now. Nothing is easy and light and normal. Or at least not normal the way it used to be. The pictures went from tonight with Ethan and his painting to our visit in Maine to a few randoms to pictures of your grave. And those pictures were filled with snow, Christmas Day, then the one month anniversary, then the planting of your tree.  And then the picture of all 4 of us at Tunison when you were lying there. It was taken on December 10th, two days after you left us and our world changed.  And right before that is December 4th when we went to the Snow Ball in the Hall at the Hall of Springs. And for some reason that event has become the line in the sand. At that event I was happy and you were alive. After that event you died and I am sad. I don’t think I can ever not think of that event as the culmination of my “before”. Everything about that night was different from life now. Even my hair was still long and light. Now it is short and dark. I don’t know how to accept where we are now. I plug along and then I see pictures or I hear stories or I just notice the difference. And I don’t like it. I want to remember how you felt with me. And I really only remember what you felt like cold. I miss you so much my little peanut. I wish you were here.

Love,

Mommy

Read Full Post »

forgetting

Dear Jakey,

Something occurred to me today and I am not sure how I feel about it. For some reason, in the shower this morning I was thinking about when Ethan and I were visiting Sarena in CA and he got so sick with such a high fever in the middle of the night. I remember not having kids motrin but because of you I knew at what amount to dose adult motrin for kids. I remember giving Ethan the crushed up motrin wrapped in a fruit gummy. And the weird thing is that I remembered all that this morning. But I couldn’t remember the dosing – how many grams  I would have given you per kilo. Not for the life of me and it just seemed so weird. How could I not know that? I used to know how much regular strength tylenol to give you and how much extra strength motrin. And now I have nothing.

And then later on this morning I got an email from the Epilepsy Foundation Parent Support Group and Kelly asked a question about Vimpat. Now had that question been asked 4 months ago I could have told her everything about Vimpat. The date you started, the amount of your increases, changes in affect, eating, behavior, and all other pertinent information. But today I had to text Daddy and ask him if you were still on it when you died. For the life of me I can’t remember. We talked about it when he called later in the day and I started to remember more but it just seemed so wrong to me. I was the Mommy that didn’t even need to write things down although I always did in case things changed and I would forget. But I never did. I always knew everything about your meds, what caused what, the date you started, the date you ended, when you increased, when you decreased and now I remember none of it.

Hilary thinks it might be some self-protective piece of the mind. And she is probably right. I knew it when I needed it and now I don’t need it. But it just is weird. And I am not sure how I feel about it.

Miss you,

Mommy

Read Full Post »

Dear Jakey,

I realized it has been a few days since I’ve written. Not really sure why. Boston was rough. A decent enough family visit but I just don’t really enjoy being there. I am sure we will get used to it again ,but it left me, and I think all of us, a little out of sorts. And then I just hate having nothing new to say to you. Sometimes it feels like just more of the same. You know I miss you so damn much and that I love you even more than that. It continues to be this whole new life I am getting used to and trying to navigate and some days are better than others. And some days are utter crap.

But today, I had a moment. Not really a moment of clarity but something like it. Ethan has been on this kick of playing swords. He and Daddy have played a couple of times over the last few days. And yesterday he played with Cait pretty much the moment she arrived. And today he asked me to play. Now I don’t usually do that. You know that. It is almost like I got so in the habit of saying no because I was holding you or feeding you or getting ready for therapy or whatever that I just never really made time for that kind of play with Ethan. And because I knew he would get it with other people, I always just saved other types of things for my time with him. But anyways, today he asked and without really paying attention, I agreed. And as I was sword fighting up and down the hall, in and out of the therapy room (we still call it that) and throughout the TV room I had my moment. In that moment, I thought of you. I pictured you watching us and I pictured you happy. And in that second, I wanted to cry because I missed you so much. And for some reason me running through the house with Ethan, waving a sword around represented so much – so much that I lost but also so much that I gained in a way. A whole new outlook and relationship with Ethan. So while I hate the way I am learning these lessons, I appreciate them. And I will keep you as close to my heart as possible while I try new things, even if it involves swords.

With so much love,

Mommy

Read Full Post »

847

Dear Jakey,

We are in Boston. We are at the Intercontinental in Boston. This is the last hotel you stayed in on November 22, 2010. We came the night after we spent so very long at MGH and Dr. Grottkau put your spica on himself. You were so brave and so incredible and we stayed here. I always wondered what it would be like to be here without you. Every stay we have had in this hotel (which is many) have been wrapped up in you. And how we used to believe that staying in a nice hotel somehow took the edge off when we were here for so many different procedures, appointments, tests, etc. Anyways, we are here. And I am almost 99% positive that we are in the very same room that we stayed at on our very first stay here. And people may wonder how or why I remember such a thing. But I do. I remember weird things and this is one of them. In the beginning we were in these suites a lot. Mostly because of the kindness of Steve Porter. And I vividly remember you on the couch which I covered in the red sox blanket we buried with you and I remember you laying there with your booty up in the air and sleeping. And I remember the tube was still in. And I remember how damn cute you looked and how proud we were that you had the strength to keep yourself in that position because for a long time you didn’t. And I sit here now with Ethan. And I miss you a lot. I feel you and our memories all around me. And I can’t tell if I am happy or sad to be in this room. It is probably both. And I wonder if I will always hate coming to Boston now. I want to like it but it just seems to sad to be here. Or it just makes me mad that you aren’t here. Who knows? Either way we will make the best of it and we will think of our times here together.

Love and miss you much,

Mommy

 

Read Full Post »

distraction

Dear Jakey,

I really should be out for my run right now but I am having some difficulty motivating. Not a long one today but I just am not in the mood. Ethan started waveriders last night and I think he liked it. We talked about it on the way to school this morning. He had spanish and we didn’t make it over to see you beforehand. Kind of a rushed morning today. Anyways, I love taking him to see you before school but I also sort of miss our walks to school. In that short block we always seem to have a good conversation. Almost like he knows it is short so he says something quickly. He was talking about when he is Star of the Week at school and gets to bring in pictures. He wanted to bring some from Disney but then got a little mixed up and asked if we went to Disney with you or if you were already dead. I told him you had already died but you came with us as an angel. He said he wished they let us keep your body even when you were dead. And then we both talked about how nice it was when we spent those few days at tunison before the wake and funeral. It may sound weird but I know what he means. We just want you back and around us.

Anyways, I do think waveriders is something he enjoys. Daddy and I on the other hand are a little skeptical. The parent group seems like a mixed bag which is to be expected. People deal with grief differently and I am not sure how much about us I want to share with them. But it this case it is not really about us, it is about your brother. And I know he misses you so much so I am happy he has avenues to deal with that. It is just all sucky.

Yesterday was also our first Board Meeting for Jake’s Help From Heaven. I hope we are doing you proud. I think Daddy and I did a good job of making a group that is pretty committed and dynamic. I hope you looked down on us and felt good about it.

Alright, buddy. I have more to say but that would just be more procrastination and I don’t really have time for that today. I am back in Ethan’s classroom – I feel like a stalker, was in there yesterday and again today. And then we leave for Boston after. So anyways, it is now or never for my run and since I am dressed I might as well go – keep me going today, buddy, I expect I am going to try to make it a short one, even shorter than planned.

Love and warmth,

Mommy

Read Full Post »

walking

Dear Jakey,

Short letter tonight because Momma is tired. But a couple weird things happened to me today. And they both had to do with you. I was in the kitchen and out of the corner of my eye I caught that picture of you walking in the lite gait. It has hung on the fridge for well over a year I think. And I only think that because of the outfit you are wearing. And I know you didn’t wear it this past summer. I think it was the summer before. Anyways, not the point. The point is I saw that picture and for the briefest of moments I felt like it came to life. I could remember everything about that day in a flash. It was cool because for a second I thought you were here. And then I felt a little crazy, like something strange had happened.

And then later I was upstairs in the laundry room. One of the pictures is an even older one – but also of you in the lite gait. And it happened again. I could picture you in that red California hoodie. You had the hood up and you looked adorable but kind of pissed off. I don’t think you were feeling it that day. But it was the same – for an instant I remembered everything and felt everything and thought you were there.

Not sure what it was about. Maybe it was you telling me you can walk and don’t need the lite gait anymore. I love you buddy. So much. And that will never change.

Love,

Mommy

Read Full Post »

belief

Dear Jakey,

Sometimes it is hard to keep the faith. On the couch last night, I was looking at the Travers picture from 2009 and for some reason that triggered this big 24 hour test of my faith. You never know when it is going to hit, or rather I never know when it is going to hit. I just kept thinking about how hard it is to believe, to truly believe in Heaven, or God, or Jesus, or even in the afterlife. I do believe. And I mostly find great comfort from the thoughts of all of the above, but sometimes it is just so hard. Sometimes the what ifs take over and it just makes me even sadder than I thought possible. Because without some sort of faith or belief it is all completely and utterly unfathomable. If I didn’t believe you were still with us, even as Ethan would say “Jakey and his bird friends” – or as the cold air I sometimes feel at night – or just as our guardian angel, then I really couldn’t function. Without the vision of you running above the clouds playing soccer or hanging out with my crazy vision of Jesus, I don’t know how I would get up each day. I need to think of you in those ways and happy and warm and finally, finally in a body that works for you. But sometimes, it is hard and I lose faith and I stop believing. And it sucks.

I talked with Miss Heath a lot today. We were on the phone for an hour and a half. I am never on the phone, let alone for 90 minutes. We talked about all different things and then she said something that I liked. I feel like she understood me which was nice because sometimes I feel so not understood. And sometimes I try to explain what I feel like and it just comes out all wrong. Anyways, I feel like she really understood about why I do some of the things I do. And why I obsess so much to my idea about your death not being in vain. She got what I was trying to say. And she said that because little boys love their Mommy so much and just want them to be happy that is how you feel too. And I loved that. I always thought of it from my point of view but when she said that it made sense. I see it with your brother and I believed it when you were here on Earth. I know you loved me. And I like the simplicity of what she said. How in Heaven you are free to be like any other boy who loves his momma. And when you see me happy, it just might make you happy too.

With so much love,

Mommy

 

 

Read Full Post »

Older Posts »

%d bloggers like this: