2012

Dear Jakey,

The new year is hours away. I think about this night a year ago when we were still in the beginning stages of our grief. Uncle Steve spent New Year’s Eve with us and we cooked and stayed home. We were recovering from too many margaritas the night before and I went to bed well before midnight. I wasn’t sure there was a lot to stay up for. And now we find ourselves coming to another new year – 2012 – and I wonder what it will bring. We really are easing into it since we are in Aruba and won’t really be back to reality until the 5th. And  by then I will be another year older and we will be getting ready for Ethan’s birthday party, his birthday and the next board meeting. I am optimistic for 2012 or as optimistic as I can be. You aren’t with us but all you have taught us is near and dear. And our faith in people and humanity is higher and for that we owe you. Hope 2012 is good for us and for you too, my little peanut.

Love,

Mommy

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Year End

Dear Jakey,

We are in Aruba now as I know you know. It has been a really nice vacation so far and you, as usual, are at the forefront of all of our minds. Ethan now has so many toys, stuffed animals, etc that are named Jake or some variation. Yesterday, he got one of those little toys that he used to play with you – not the wind up toys but the little ones that Abue always brought back from her travels – anyways, of course its name is Jakey Poo.

I have come up with so many things to write you but for some reason I seem a little stuck in getting the letters out to you. I have been doing a ton of reading lately and I wonder if I will ever read a book again that doesn’t somehow remind me of you in some way or another. And they aren’t those books about Heaven and after-death stuff. They are just regular books. One of them had a daughter that had a terrible head injury and had seizures and was in a coma. As they talked about the fear and talking to your child while in a coma and the different meds, I hated that I knew first hand what was being described – and that I knew the accuracy and inaccuracy in the meds described. One book had an adult with seizures and it made me think so much about how you felt when you had your seizures. It always made me sad that I could never relate to your pain or your discomfort. And reading about it and how awful it feels like to have seizures made me sad that you endured so much. And made me love you even more (not that I am ever sure it is possible to keep loving you more but somehow it is) because of how you persevered.

At night when I can’t sleep I think about all different parts of our life together. Last night for some reason I thought a lot about when you had a feeding tube and the doctors all were prescribing too much food at too fast a rate and you would get sick. I remember when we figured it out – the rate, the amount, the time that worked best for you. And I miss that. I miss figuring out how to care for you best. And I miss the way we communicated. You couldn’t ever tell me what you needed but we could somehow figure it out. Sometimes it took lots and lots of trial and error but we got it worked out. Until the end when we didn’t know, or I didn’t know, that your time with us was done. That makes me sad too. I wonder when or if I will ever make it through a day when I don’t think about the day you died. About the 911 call, about the ride to the hospital, about Ethan seeing all that, about Dr. Duthaler telling us you were gone and that priest praying over you and telling us your soul was already in Heaven. Every time I think about it all, I try to flood my mind with the good times and with my picture of what you look like now in Heaven. And I do think you look great but I miss you here so much.

It will be 2012 soon – another year that I won’t have you with me. We made it through 2011 without you and it is hard to believe that we will just keep plugging along. Don’t forget how much we love you and think about you all the time.

Happy New Year, with love,

Mommy

 

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Christmas II

Dear Jakey,

Yesterday was your 2nd Chrsitmas in Heaven. And while going through all the firsts was definitely rough there is something about the start of all the “2nds” that is also not easy. It just makes it all a little more permanent and with that permanency comes some forced acceptance – you have to begin to really accept how things now are and each day there is less and less of that optimism that things may change. I guess it isn’t really optimism but more like misguided hope – but any rate with the passage of time you just have to come to terms with the fact that it isn’t all a bad dream. And that seemed especially true for me these last two days without you. So many of our traditions were the same as when you were here but we now have some new ones. And to be perfectly honest, the best part of my holidays weren’t in the traditions of Christmases past but in the new things we have done to keep you present with us.

On your anniversary date, Miss Trish left tons of those battery operated candles around your grave. We kept them there, turning the off each morning and on each night. The lights were dimmer and some of the batteries began to die. We ordered new batteries and on Christmas Even changed all the lights. It looked beautiful. And made us proud to be able to do something. We talked to Ethan about going to see you after he made sure Santa came in the morning and after he opened one present. He said the only thing he wanted to open was whatever you gave him. I think that ended up being one of his favorite things last year or at least most important things. Who would’ve guessed that a random decision made in the deepest moments of grief would have been the start of a new tradition? This year Daddy came up with what to give him from you and it was perfect. He has his #1 Brother Lake Placid key chain and I think it makes him feel connected.  Anyways, we bundled up and went over and Ethan brought the card he made you and some ornaments. I brought you a new goofy headband with peppermint swirls – and Daddy said he was sorry to you that I was still making you “wear”  these silly things. But I know that you always tolerated my goofiness and that you still do now.

Anyways, the rest of the day was wonderful – happy and peaceful and I think it was our new traditions with you that got us off to a good start. We ended the day, after Abue and G-Pa went home, with some winter olympic sports on the Wii. Santa had brought us the game and one of them was hockey. Your Mii played with us and Daddy, Ethan and I fought so hard to protect you. As usual, your wii mii was an awesome athlete and you were our super strong goalie  and at least for me, it was a nice ending to the day to have us be a family of four again – even if only as a wii mii family.

Merry Christmas,

Mommy

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souls and signs

Dear Jakey,

You have been on my mind even more lately if that is even possible. It seems so strange that we are about to have our 2nd Christmas without you. It’s been weird and kind of uncomfortable getting ready for it. It’s like I feel guilty planning for the whole family without you being here. No matter how much fun we are having or as happy as we are, there is that pit in my stomach that doesn’t really go away. And not only doesn’t it go away, it sometimes consumes me.

I’ve been thinking a lot about books I read right after you died. Miss Kelly gave me that book Many Lives, Many Masters and I got pretty obsessed with it. I think I am ready to read some more of those stories because I have been thinking so much about what they say. I keep wondering when I am going to meet you again. I think I told you about this little boy named Liam. I don’t know him or his family, or even where he lives but I found him on facebook through other people I know. And his first birthday was 12/13/11. His story is like yours and he even looks like you. He is fighting so hard and as I follow his story I think of you. It’s not like I think you are back here as him but I just feel like it is all so ironic that you died on December 8, 2010, we buried you on December 13, 2010 and Liam was born on December 13, 2010. He is here on Earth fighting the fight and teaching the lessons that you did in your time here so well.

Anyways, it has been over a year without you and I am looking for signs of you everywhere. Ethan tells me has seen the cardinal. I don’t know if he has or not. He hasn’t seen it with me. We call for it most mornings but it’s been a while since we’ve seen it. And I anxiously await seeing it again. And I anxiously await for some signs of you.

I love you buddy. And miss you tremendously.

Love,

Mommy

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letting go

Dear Jakey,

It has been a while since I wrote again. And it is my own fault. My last letter to you was about things that haven’t changed since you left us. And of course, as soon as I finished writing it all I could think about are all the very many ways things HAVE changed. There are too many to mention and honestly, every thing that is different I have a hard time finding to be a positive because it all came at such a cost.

While not really a big deal, but different nonetheless, your mother stays up late now (sometimes). In the last year of your life I really wasn’t very good about sharing you at bedtime. Not really even sure what made that change but at some point I just didn’t share as much. I did your meds and put you to bed while Daddy put Ethan to bed.  And more often than I ended up giving you meds in our bed and snuggling with you until we were both asleep. And I think that is still the hardest part for me. Even last night, I was laying in bed unable to sleep because I just kept thinking about how you used to be there next to me. And even though I would sometimes complain, there was nothing about it that I really wanted to change. Anyways, I started staying up late, often watching Criminal Minds with Daddy. I think he likes the change (obviously not the reason) because we get to watch these shows together now. And for a while, not as much now but still a little, I was obsessed with Criminal Minds – sometimes watching 4 or 5 episodes in a row. Last week there was an episode with a dying boy. The dad lost it and began killing people. And while that was so totally extreme and what he was doing was awful, there was part of me that understood. When you lose a kid, you lose everything that is right in the world. And as much as you don’t want it to take over, you can’t help sometimes wanting to take it out on others. Anyways, I am always trying to make sense of what happened and while I am not sure it ever will, I grasp on to anything that might help. The father was sitting with his son as he died and right before he died he said this to him: “Some of us think holding on makes you strong; sometimes it is letting go.”  And I think that applies to you too.

Missing you even more than usual,

Mommy

 

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5 things

Dear Jakey,

Today a lot of things entered my mind that I think you should know. So in no particular order:

1. Your clothes are still in the closet you used to share with Ethan. Not as many of the shirts since I had the quilt made but all your pants and sweaters and things like that. This morning I asked Ethan what he wanted to do about it and he said keep them there. And I said I was glad because I liked looking at them each morning when I got his clothes out.

2. Your Believe the Hype shirt is still in bed with me and Daddy. The skiing shirt they had to cut open on the night you died is also in bed with us. Some nights I hug them tight, some nights Daddy does and other nights they are just there with us. On Fridays, Ginger folds them and places them on top of the pillows when she makes the bed.

3. On the door of the room you shared with Ethan, there is still an E and a J hanging there. Your bed is still in there too and everyone calls it Jake’s bed.

4. The quilt of your t-shirts has a home on our couch and sometimes we all cuddle underneath it. Every day Ethan hugs the bear made from your Easter clothes and it is one of his favorites.

5. I remembered about the video we had on YouTube a while back of you walking on the LiteGait. We added it to the website and I had to re-name it. A man from the LiteGait company saw your video after we put it back up and he shared it on the LiteGait facebook page. His status was “Baby Steps lead to big gains. You will get there Jake, keep working on it!”  I love that he wrote that although it broke my heart at the same time. It just helped me remember all the different things we did with you and all the things you accomplished in your short time here. And I still think it is more than most people could ever hope for.

That is it for now. I just wanted you to have some concrete examples of just how present you are in our every day life.

With lots of love,

Mommy

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touch

Dear Jakey,

It’s funny because I was waiting so long for the 8th to pass and now it has. And I am not sure what I expected but nothing is different. Passing that milestone makes nothing easier, nothing better, nothing at all different. It makes me think that it will always be like this. I guess I know that it will always be this way but sometimes I just try to will it to be different. We had such a good weekend in Lake Placid. And you were in the forefront of all of our thoughts. And then we came home and as I did laundry and did some work, I came back to reality. The reality that you were gone and how terrible it sounds and feels that you have been gone over a year. As we went to say goodnight to you, I was struck by that same pit in my stomach feeling that I have had so often since 12/8/10. I remembered that on this Sunday a year ago we had your wake. So many people came and the whole day was so surreal. And a year ago I didn’t know the worst was yet to come – I was naive enough to think that I was already in the worst part of it. The worst part came tomorrow – after the mass, after Daddy spoke and when we had to carry you to the hearse. And before we could carry you, they had to close the coffin. And that was the moment I realized that I would never touch you or kiss you or see you in person ever again. And that was and continues to be the absolute worst. I can’t even begin to fathom it a year later. I would give everything I own to be able to be back in time – and even if I couldn’t go back to you alive, I would go back to those days sitting with you at Tunison. At least I could touch you.

Love,

Mommy

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honor

Dear Jakey,

So the time has come and we are in Lake Placid. We got here last night and have a pretty perfect room right on the lake with lots of space and treats waiting for us when we checked in. It immediately made me think that you would have liked it. Had you been with us we would have settled in to feed you, enjoyed the Pinot they left for us and the snacks and then made a plan. We still enjoyed our treats but then we raced off to the Olympic Center to go ice skating with Santa. The thing of it is that you were in the forefront of all of our minds. When we walked into our beautiful room Ethan couldn’t stop talking about how much he loved it here. It reminded me when we were in Boston for you dr.’s visits in the super big suite at the Intercon and Ethan said it was nicer than our house and didn’t want to leave. Anyways, he sort of stopped in the middle and thanked you for us being here. And then Daddy made a comment about all good things coming from you. And I couldn’t agree more. I do believe it is you that keeps us all in line and gives us opportunities to be happy when that is so much harder than it used to be. And I spent some time today thinking about how important it is to me that we keep doing things and experiencing things we couldn’t do before because in a weird way it is honoring you. I feel like if we didn’t do stuff we would somehow not have learned anything from your time on Earth. And my little peanut, we have learned more than you can imagine from your time on Earth.And when we experience new or different things I hope you realize how close to all of our hearts you are.

A while back there was a quote on Criminal Minds by Dwight Eisenhower. In light of the last few days and us being over a year without you, I can’t help but keep thinking about it. It is so true and what he said was: “There’s no tragedy in life like the death of a child. Things never get back to the way they were.” I don’t know much about Dwight Eisenhower but I do know that in this he is absolutely right. Things never will be as they were and we are all just trying to make do.

With so much love,

Mommy

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one year

Dear Jakey,

So it has been a full year, almost to the minute that you left me. I am actually sort of happy that some of the exact times are lost on me – it was around 6:30 that things got ugly last year and I think it was around 8:01 that your death certificate said you died. But I am not 100% sure and I am not looking it up. I am trying to not get lost in the details of what happened to us 365 days ago. But as I sit on the couch at 8:18 on December 8th, my mind can’t help but wander back to that night. I can’t believe it’s been a year and I can’t believe tomorrow will be the first day where  I can’t think about what we did a year ago. A year ago from this moment (give or take a few minutes) you died. And a year ago tomorrow and all the days that follow are us figuring out life without you. We will have to look back to over a year ago to remember our real life time together. And while I was anxious to get through today, it continues to just be heartbreaking to now think that I can’t look back at our time together in the last year.

We had a “party” at Cantina last night for you. It was really for Jake’s Help for Heaven but we all know that wouldn’t exist without you. You made all this happen for us and for those we have been able to help. And it was really quite powerful to see the amount of people- from all parts of our life- that came out to support JHFH and us. And to pay homage to you. And Daddy and I did our very best to thank everyone and let them know how they have helped us get through this past year. And I kept it together until the very end when I just couldn’t talk about it anymore. I just hit the wall at the very end and needed to get home, put your brother to bed and hug him extra tight and fall asleep. But I was really filled with so much love yesterday – love for you and what you taught us, love for Daddy and his strength, love for Steve and Spunky who travelled to see you (and who we think of us your godparents), love for Abue and G-Pa for spending just as much time there as we did, love for Karen, Cynthia, Ann, Kate and Cait who were totally your people and came out for you, love to all of our friends and the amazing support system we have. And love to Heath and Jeff, who know first hand many of the lessons that you taught us through their Tessa and who pretty much gave us Cantina to host a party in your honor.

I woke up this morning crying and not wanting to get out of bed. It wasn’t what I expected and it was rougher than I even imagined it to be. And for the first time in a long time, I laid there thinking that I really just didn’t want to get out of bed. And I so understood how so many people can just crumble under a loss like this. And I came as close as I think I ever had to just staying in bed. But then  Daddy gave me a hug and sat with me and I remembered I wasn’t alone. And Uncle Steve was downstairs. And Ethan woke up in a super mood. And Spunky was here. And I had to make breakfast and pack lunch and get everything together. And I was thankful for all that was still here for me. And I didn’t stop thinking about you all day but I knew you gave me (and lots of others) strength to carry on. And that is what all I am trying to do.

Love,

Mommy

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fighters

Dear Jakey,

The other day, another little fighter went up to Heaven. It has been on my mind pretty much non-stop for the last few weeks that I have been following her story. It makes me think of you and of her family. Her mom and dad that are getting used to a new house now – a house free from equipment and machines and things that most families never have to deal with. They are getting used to a whole new set of inner family dynamics that is so hard to explain and so hard to get used to. Almost a year later and I am not sure that we are any closer. And they are getting used to the empty space that will never be filled up again. Little Miss Hannah died Sunday night. She was 3. She too had a rare disease that crippled her body, but not her spirit. She took it as long as she possible could and now she is at peace. And with you, I hope.

There is another fighter down here on Earth named Liam. Not even sure where he lives. I never met either of these kids or their families but have followed their fight. Sometimes I feel like the only people I can relate to are these strangers who have lived the life that I lived and know about the life I miss so much. Anyways, when I first saw Liam’s picture he looked just like you when you were little  – before you were sick and those first few months in the hospital. He has a chubby face with perfect features and his hair is sometimes in a faux hawk. He has a feeding tube and just looks like you. I showed Daddy and he agreed. Anyways, he has seizures and possible mito issues. No one really knows – seems to be the same deal. He is in the hospital now for a g-tube and has given his parents a scare. He almost coded and was having trouble breathing on his own so was re-intubated. When I read about it, I could physically remember standing in the PICU at Children’s when you nearly coded. And standing in the corner with Daddy watching so many doctors save your life. It was so long ago and at the beginning of the journey when we knew so little. And it just made me so sad that other families know that feeling and that scary, awful pit that you get when you are afraid that you kid is going to die. And then that even worse feeling when your kid does die. It just sucks that so many people know what it feels like. Anyways, Liam reminded me of you again though. Last night, he pulled out his breathing tube. He got pissed off and took it in his own hands. It reminded me of when of one of the times you were extubated and you were almost slap happy and giggled. It was in those days of your post-pentobarb coma that was the last time we saw you smile or heard you giggle. I hope you are doing a lot of laughing in heaven – that big belly laugh you used to have way back when. I miss it but as I sit here and remember all about you I can almost hear it.

I miss you so much. So very much.

Love,

Mommy

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