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Archive for January, 2012

Blue

Dear Jakey,

It is funny how things work. Yesterday I was happy, last night I was sad. I found myself sadder than I have been in a long time – the kind of sad where I couldn’t stop crying. I know I do it to myself sometimes but I think on those days where I feel you so close in the light of day, the night is just too hard. It is like it makes it even more obvious that you are not with us. And last night I found myself reading about all these kiddos I don’t know, but who are fighting the fight. And when I read about James in IL and his ear infection that is cleared up in one ear but the fluid still in the other it just about sent me over the edge. That was the stuff for us that was so typical yet so hard. The other stuff I could sometimes deal with better than the cough that was junky or the fluid in the ear. It was the seemingly little things that kept us balancing that line. And then I read about another boy named Tripp who died on the 14th, a week ago. He wasn’t quite 3. And his mother wrote the most beautiful words on the 12th – knowing her son was likely going to die soon. And then Hannah’s mom posted these pictures of her eating ice cream dots. And it’s sad to me so many that know what it is like to have a happy kid, a sick kid and then a dead kid. And that sounds so cold and so harsh, but it is true.

And today we are off to NYC to take Ethan to Blue Man Group. We can’t seem to stay still  – we didn’t with you too much and now it seems like we are moving around even more. And as usual, I will miss you even more – or in a different way –  in NYC. We did a lot there together and it’s not quite the same without you.

Love,

Mommy

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Present

Dear Jakey,

There is no denying that you are ever-present today. It’s funny because I get myself all wound up sometimes with thoughts of you. Yesterday you were in my head all day. I can’t blame it entirely on being at the hospital but I know it had something to do with it. It always feels strange being there. And even stranger when people talk about their good experiences there. It sucks to sit there and think about how you died there. Anyways, on top of those thoughts I have been thinking about all the work we are doing at the house. We’ve got new windows which isn’t a big deal but we ended up painting the TV room and kitchen and they look very different. It makes me wonder about what you think about it. And if you are okay with it. I know that may sound weird but its true. And then there is you and Ethan’s room – which was always a bit more Ethan’s room than yours but it my heart it is still yours too. Your bed is in there. And some of your clothes and things remain in there. And now it is looking so different. And while it is exciting to give Ethan a big boy room, it really is one of those bittersweet things where the change sometimes stops me in my tracks. Especially when I was scraping wallpaper during the day and painting – it was kind of like tiling the bathroom – something I can do now but couldn’t have done before.

But then this morning came. And we had an early morning phone call from Tuck. And her Julia left a message singing “oh Jakey tree, oh Jakey tree” and it just about stopped us in our tracks in a good way. And then I went snowshoeing with Cynthia and she talked about how her kids have been talking about you lately. And then when I got home there was an email from Daddy of a picture of a cardinal outside his window at work today. And I remember that you are with us. And I convince myself that it will be okay. But it doesn’t change the hardness of it all. And that even though we are doing good in your name and I have been busy all week ordering equipment, writing letters and trying to help – I still mostly just want it to be like it was because I miss you on my lap and on my arm.  I guess I can only ask that you stick close and if not always close to me than close to our friends because I love when they can share stories of you. And when other kids are closer to you now then even when you were here. And that you give so much to everyone still.

But I miss you.

Love,

Mommy

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Dear Jakey,

My letters to you are always personal and while others read them they really have always been between me and you. Today, my little buddy, I am writing to you to tell you something that has been haunting me since I read about it on Friday. I can’t quite get it out of my head and I can’t come to terms with it at all. I posted it on my facebook page with the title that “Everyone should read this” and it received no comments at all and that bothered me too.

On Friday, I happened upon a blog written by a mother of a three-year old girl with a rare disease. She is a patient at CHOP – a hospital we considered for you through the years and the hospital that always is either #1 or #2 of all Children’s Hospitals. The year we spent 117 days at CHB it was #1 and it always pissed me off that we were at the #2 and not there. So through the years I have held it in pretty high esteem – trusting the research that comes out of there and was a place I looked at when I was at those points with you that I felt we were ready for a new set of eyes. Anyways, this three-year old girl named Amelia has a disease which will cause her kidneys to fail in time and she will need to a transplant to live. In a meeting with her doctors and a hospital social worker, her parents were told that she would not be given a transplant because she was “mentally retarded”. It was one of the things on a list of conditions that they would not perform a transplant on. The mother wrote this much more eloquently and detailed than I ever could and I think everyone should read this. And everyone should be pissed. And everyone should want to do something about it.  http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

I guess what haunts me the most about this letter is that it could so easily have been me and Daddy listening to the doctors with you asleep in the stroller between us. Except if it was us, we probably would have had Ethan with us too since he was a huge part of your care. And that bothers me just as much as anything else. That Ethan could have heard people make such a gross judgement on you and your life. That people think they have the right to make these quality of life calls without having any real clue about what life outside of their world is like. And I guess what else really bothers me is that I can almost hear some of our friends saying they understand what that doctor was saying – again people thinking they have a clue when they don’t. And people who don’t have any idea and don’t want any idea about raising a child with such medical complications.

And I think about how fortunate we were, especially with Dr. Grottkau. Imagine if he decided not to perform your hip surgery because the odds were that you weren’t going to walk or because you fit in one of the categories on a sheet of paper or because he thought his definition of quality of life was the only one that mattered. He wasn’t like that, in fact, I remember him telling us the reason to do the surgery sooner than later was so that your hips would be better prepared for when you were bearing more weight. He gave us all hope, didn’t rob it from us.

And the irony too is that today is Martin Luther King day and everyone is posting quotes of his on facebook. And how important it is to be the change that we want in the world and to be self-reflective and all that. I get it. I believe it. But it isn’t just about one day – it is about taking the time to read something and taking the time to fight against what is bullshit in this world. And Jakey, you did that everyday and I am trying to do it here now. I miss you buddy and I love you so much.

Love,

Mommy

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Dear Jakey,

Once again I have let time slip between my notes to you. And once again it is the same old reasons. I have plenty to say, probably more than I can fit and organize in to one letter, but I get to a point where these letters are hard, they just remind me of all that is lost. And while I love the connection from before you died, I can’t always pretend it is the same. It just isn’t the same.

It is strange also to me how much we have been through. And I find myself somehow comforted yet also devastated to know so many people are going through what we did. I don’t think I realized when you were here because I didn’t really have time or energy to find these families. And now I follow them so closely and I can relate in a way that I can’t relate to many people. And it makes me so sad and angry that so many little people have to live such hard lives. And sometimes it makes me angry at those around me who have no idea, or those that think they do but don’t have a clue. And then I need to get over it and I realize the only way to do that is to write to you. And it usually works, like when you were here – you keep me centered and focused and positive.

Last weekend we had Ethan’s birthday party. And Sunday he will be 7. Hard to believe that he is such a big guy now. Anyways, I found myself wrapped up in Ethan’s 2nd birthday party where everything changed as we knew it. Even though the date wasn’t right – that party was the week after his birthday not the week before. And although you have so many significant “anniversary” dates I can’t quite ignore this one. And this time around I feel as though I will have a pit in my stomach for two weeks – it started the night of Ethan’s party January 8th and I suspect won’t go away until January 21st. Last night in bed, I re-lived all those details. Waking up in the middle of the night with you, knowing something was wrong, going to the ER, dealing with bullshit, the ambulance ride, stopping in Springfield, and the whole clusterfuck (sorry peanut but there is no other word) from that hospital. The helicopter ride, watching them save your life at Children’s and all that happened. I also re-lived all those moments before that happened – when life as we knew it was simple. Two parents, two young boys and a bright future. And we quickly learned that wasn’t our path and that we can’t take things for granted. And while I know you taught us a lot and made us all better people, I mostly wish that we didn’t have to learn that and that we could just be two parents with two boys and a bright future. But as soon as I write that I feel bad for putting it down – because more than that I just want you to know how important you were. And we really wouldn’t change anything about you except to make you suffer less. But that what was so amazing about you – you handled it all so much better than us. And really it is all just to say I want you back so bad.

Love,

Mommy

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Dear Jakey,

We got home late last night, stayed at the Homewood and got up early this morning with a harsh reality check! Cold, snowy weather and back to the daily rush. Our first stop before even getting home though was to see you. And it got me thinking so much about our routines and visiting you and then it got me just thinking even more about you. We really had a lovely vacation – Ethan was beside himself each day – so happy and carefree. And we all were really happy. And it felt nice to be away from routines and all that keeps us rushing around all the time. Not a moment went by though when we didn’t each think of you in our own ways. I know for me I found myself thinking about what I miss so much about our time together – other than the obvious missing of you being here. I miss the moments when it was just me and you – the moments when I had to slow down and not rush because it was what you needed – whether it was when I fed you or when I helped you get to sleep or when I just sat with you and we talked or snuggled or even watched the stupid Housewives on TV. As busy as you kept me, you also gave me a lot of down time – not lazy time but quiet time with you and me. I had to respect your needs and what was best for you was always paramount. And those moments when it was just me and you are hardest to live without.

It is hard to believe that I have spent over a year without going to Prospect and without having lunch with you – I remember how proud and happy I was to experience that with you. Those are some of my happiest memories – and dropping you off in the morning with Logan greeting you with a super loud “JJ’s here!”. I think of how little I drive now – no trips to Exit 19 and back, sometimes 4 times a day. No trips to Yoga to see Ann. No trips to MIPT to see Karen. And no rushing home from where ever to see Xavier. I miss all that so much because there is nothing to replace it. Nothing that can even compare to it. It seems amazing to me that we only spent 4 years, 7 months, and 4 days together and yet nothing else in my 38 years (yep, another birthday came and went without you) has had as much of an impact. Being your mother has forever changed me. And being your mother is the best thing about me.

So as we all transition back to home, know how much we love you and miss you. Know that all of think of you all the time and we all have our own ways of showing it. It kills us all that you aren’t with us on Earth but we hang tight to the belief that you are with us in spirit. I hope it is true. For me, I know writing these letters makes me feel like we are communicating  – the same way they did when I wrote them with you sitting here next to me. And I know that being home alone today, taking down the Christmas stuff and unpacking is making me miss you extra. I love you so much my amazing strong boy. You will always be my #1 peanut (Ethan is my little walnut now, he even knows you can’t be replaced!) and I can’t wait to see you again.

Love,

Mommy

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