holidays

Dear Jakey,

Entering the cemetery this morning, Ethan called out “Happy Halloween Jake” to you. It is our first Halloween without you and I kind of wish I could just skip it. I just read a blog by another mom who lost her kid and she was writing more about how sometimes for parents who lose kids, Halloween is hard because of all the gravestones and RIP stuff. That isn’t the case for me, I just don’t want to go out without you. I don’t want to think about all the crazy things I made you do on Halloween and how cute you looked. Last night on facebook Spunky and Miss Trish had a little was down memory lane with all the different costumes you guys were. Your very first Halloween you and Ethan were sharks – the cutest sharks ever when I used to buy the costumes from babystyle. And that year stands out because it was before you got sick. You were about 5 months old and Ethan was 21 months and you were both quite the sight. Such a fun night but seems a full lifetime ago. And then the next year you were spiders – again from babystyle. We saw Nadia in town on Saturday afternoon at the Fall Festival and her son was wearing your costume!  She had bought it at the Katrina Trask Consignment Sale where I had sold it at. Small world but made me kind of happy that her son had it. It seemed fitting that someone connected to you while you were on Earth remains so while you are in Heaven.

And then the next year we had our first Halloween in our new house – having only moved in like two days prior. And you both were Monkeys. And then you were Officer Jake and Ethan was SWAT. And last year you were a vampire. A pretty cute one. And I remember the skinny pleather pants I bought you at H&M that Daddy was sort of mortified by. And Abue did your makeup and Ethan was a Knight and so protective of you. And this year Ethan is an Army Guy – the costumes are from where we got the Officer and SWAT costumes so it is cute and personalized. And he has a marshmallow blaster that he is perfectly happy terrorizing everyone with. I can only imagine the face you would make when he blasted them at you.

I wonder what you would have been this year, my little peanut? Would I have been able to get matching outfits again? Or was that over? Ethan surprised me by being an Army Guy  without our typical fight over what costume. You know I have to think they are cute or I won’t agree to it. You could have been an Army guy too. It would have been perfect.

On Wednesday night we go to St. Clement’s. They are having a Prayer for the Deceased/All Soul’s type thing and they will be handing out the named crosses that have hung in the front. Yours was the first one up and while I will be glad to bring it home, I sort of prefer it stay there. Bringing it home is another reminder of time passing us by where the feel of your skin and all that seems farther and farther away. I miss you buddy.

Love,

Mommy

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you

Dear Jakey,

Yesterday I super proudly represented MIPT Kids at the stationary bike race. It has been happening for a bunch of years and for some reason I could never be there. And this year I could. So I was. And I rode on the MIPT kids team which was just perfect. I know how much you loved Karen and MIPT and it seemed like just the thing you would want me to do. And I couldn’t help get a little teary eyed thinking about the group of people I know through you and how we are all still here and you are not.

Anyways, I am keeping really busy with the foundation. We are doing good things in your honor. But it always comes back to the startling realization that we are doing this because you are gone and no matter how much good we are doing, whenever it sinks in why it just takes my breath away. I would give anything to have you back here.

Love,

Mommy

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lows and highs

Dear Jakey,

What a day! It started terrible with the whole Ethan hospital situation. And then got infinitely better with news that all his blood work was normal. And then it ended pretty great when we went to deliver the iPad. Being that your mom is somewhat computer challenged it didn’t go as well as if Daddy did it but all in all it turned out quite well, even if it took several hours more than I anticipated. Your brother got a little grumpy and we had a big talk on the way home about what we were doing and why. And then when we were home taking care of Jake Muffin he told me he really liked watching Nick use the iPad. And so did I. It is because of you, my brave and amazing boy, that we are able to do this. But it doesn’t make missing you an easier. 

Love,

Mommy

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waiting

Dear Jakey,

I write this to you this morning after an eventful morning. Ethan has some strange bruising on his thighs and when we took him to the doctor this morning he had to get some stat blood work. We went to the hospital and both of us felt tense driving in. I have been there a handful of times since you died and I hate it each time. I just about puked at the thought of bringing my alive kid there. And as you and I both know blood work has never been my strong point. That was Daddy’s job and he was good at it. Anyways, we pull in and Ethan says “isn’t this where Jake died?” Yep. It is. But I think your spirit was there super strong because your brother was amazing. He didn’t flinch even though I could feel how tense he was (he was on my lap). He was a warrior, just like you.

And now I wait. Wait to find out what caused the petechiae and figure out a game plan. And hope it is nothing serious. The waiting game is something I am good at it, I wish I wasn’t but you gave me skills I never knew I had. And I know we will face this head on the way we always did with you.

Love,

Mommy

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time

Dear Jakey,

We got out of the car last night and it was a cold and crisp fall night. It was close to bedtime so I was rushing Ethan along and he stopped in the middle of the sidewalk and said “Good Night Jake” looking straight up. It was such a clear night and there were some really bright stars. He said you could see straight up to Heaven. It was a nice way to wrap up our day.

I think Ethan and I have both been really aware of your absence this week. I’ve told you that I have been struggling some and expect that I will through these next few months as everything that happened last year feels even more real. And I can’t help getting stuck in that feeling of I wish I knew that you would die. We are approaching Halloween and I know that I never would have thought you wouldn’t be here for this year’s Halloween. But, back to Ethan. We are here together while Daddy is in Vegas for the same conference he was at last year. And I think for both of us it just seems so strange without you – you kept us busy and it didn’t seem quite as long. Ethan has been sleeping in my bed – just the way the both of you did when Daddy traveled and each night he sleeps with your shirts. He won’t let me near them. He can’t always find the words but I know that is missing you even extra during these few days.

I finally told Dr. Yaman what happened. For some reason, I couldn’t tell him. I am not sure what made telling him different but I think that with Dr. Yaman there was always so much hope. We always felt that he was the type of doctor that was up late at night thinking about you and trying to find something to help. When we parted ways to put you on the diet we still would check in with him periodically because we felt he knew you (and us) so well. And he is now in Syracuse. He wrote us the kindest letter and wants to come see us. He even apologized that he couldn’t have done more to help you.

We love you so much buddy. All of us do. We miss you so much. I hate that we are coming up on one year. I can’t believe after December 8th when I look back at a year ago you will already have been gone. The passage of time is always tough. I was thinking last night when Ethan was talking to Daddy about giving him the biggest, tightest hug when he got home and I remembered Ethan being a year old in our condo in Boston running to give Daddy a hug every night when he came home from work. I remember you were in my belly. It is hard to believe that this is where life took us.

Love,

Mommy

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random

Dear Jakey,

Yesterday your Mom found herself in another random experience. As you know, this is nothing new but I feel like I have had a few of these days that really stand out since you left me. Yesterday I helped out a friend that I met through you in a way – she was one of the people involved with the trunk show at Saratoga Trunk. Her name is Ericka and she makes really beautiful jewelry. Anyways, she asked me to model for her and I agreed.  And then when yesterday came it was all 18-year-old working models plus me. A solid 20 years older than them all and no clue what to do. But I woke up yesterday just knowing you would make it okay. And you did. It was fine. It was even fun. Sitting in makeup for 2 hours and having 5 outfit changes all done in a car made for a definitely different Friday. And I thank you for the courage to do it.

Love,

Mommy

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signs and symbols

Dear Jakey,

This whole week has me thinking about you all the time. I keep trying not to get stuck in the moment you died but instead go to all the many moments before. This time of year seems so hard, maybe the hardest of all the “firsts” and I think because it is all getting closer to the worst thing ever. This Halloween will be another first. Daddy going to the IHG conference will be just me and Ethan, not you me and Ethan and somehow that seems so different. And we are coming up to the weekend when I think all things started to get funky with your bones. Anyways, this week I find myself looking at pictures and thinking about you in ways that seem even more intense than usual. And today, I felt you around or at least the symbols I have come to depend on as my communication with you seemed really obvious. When I went to go see you this morning the road was blocked with a big cherry picker. I was pissed and almost gave up but instead went in the other entrance. As soon as I crossed into the cemetery your puzzle went off and I took it as a sign that you were glad that I went in that way. And later today for the first time in so long, Ethan and I saw the cardinal.

And Jakey, the coolest thing happened to you this week. You got booed! Ethan is so excited because then he got booed by the same person. And we keep talking about it and wondering who it was and how you know who it was and we don’t! I miss you buddy, more than you could ever imagine.

Love,

Mommy

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cemeteries and funerals

Dear Jakey,

I read a blog the other day by a mom who lost her daughter. She wrote about where her daughter is buried and how over the years she has gotten to know so many more kids that are buried there. She wasn’t talking about Greenridge but another cemetery near by and was talking about when her friend asked if there was a children’s section in the cemetery. All this may seem weird to people but I went on to read how she loves the cemetery where her daughter is buried. And as I read it, I thought about you and I thought about Greenridge. And I thought about how when we go to see you we also end up seeing a lot of kids. We see Eddie and Jake, we see Stretch and Olivia. We see the son of the man who is on a similar schedule to me visiting and who has been on this schedule since 2004 and tells me it never gets easier. We see the parents who lost their 11-year-old many years ago. We see the scenery change by the statue of the young boy and we see the young mom and dad who buried three babies already. And it makes me think about all these young lives lost and how terribly tragic it is. I also started reading a blog by a mom who will likely lose her three-year old daughter soon. She too suffers from a rare disease and her body has taken just about all it can. This family knows it is coming and I find myself wondering if that makes it any easier. We didn’t see it coming and I don’t know if that was better or worse. I guess it is all just a variation of awful.

Daddy and I went to a memorial service yesterday. It was meant to be and was successful in being a true celebration of life. Friends, colleagues and families shared stories and experiences they had with Dr. Havens and as a result everyone there felt a little better and a little closer to him and to each other. Sitting there I thought a lot about your upcoming anniversary. Daddy and I have talked a lot about how to deal with it – whether we wanted a service or not, whether we wanted a celebration or not and I think we decided we don’t want any of that. Having spent yesterday afternoon at a true celebration of a long, vibrant life I just can’t imagine doing that at this point. Dr. Havens lived 86 years and lived a life worth celebrating. And while I know without a doubt that your life is worth celebrating it just isn’t the same. We lost you so young and you forged intense, amazing relationships with those lucky enough to spend time with you and for now those memories are what we have and what we focus on. You will continue to be in the forefront of my mind and heart each and every day and in the heart of those you touched – some of who you may never have even met which is the true wonder of you. But for those of us who knew you so well we will just spend the day together and spend the weekend doing what we do best – having family adventures. It may bring us to the North Pole or Lake Placid, but wherever we are we know you will be with us helping us navigate our life without you.

Love,

Mommy

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Finally

Dear Jakey,

So I finally did it. I got my “memorial tattoo”. I had always, even before you died, thought of adding your dates to my arm tattoo. For whatever reason, ten months passed and I didn’t do it. Ironically enough people ask me all the time about that tattoo. They think it is new which is weird to me. It has been there for a year and a half, through two summers out in the open. But for some reason people have seen it for the first time since you died. And I explain that it was for you and what it meant. And even though I know people mean no harm, it has become annoying. And when I talked to the tattoo artist about it, he gave me his two cents which was basically that he often discouraged adding dates. His reasons gave me food for thought and I found that he much more eloquently than I could say explained the thoughts in my head which caused me to take 10 months to get in there. And when I talked about my other idea, the one that randomly came to me one night and that seemed liked it made more sense. So today I got it done. It is on the back of my neck. And it says Jakey. And I love it. I hope you do too. It was sort of random though – the appointment was at 3. I was home before 4. And then Ethan had TKD and Daddy and I had a Board of Directors meeting. I think you’d be proud of what we are doing. It was a good productive meeting. And now I am home, missing you and happy I have something else to keep you close to me.

Love,

Mommy

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life

Dear Jakey,

Over the last few days, I have been thinking so much about where our life is lately. Ethan, in all his craziness, is doing so well. He is happy and getting so big. Daddy is putting him to bed tonight and I was sitting with Jake Muffin and I was thinking about how much he has changed since you saw him last on Earth. The change from kindergarten to 1st is crazy and he is just so funny. His vocabulary is growing and he can be so serious and thoughtful about things but then go right back to being such a laid back fun-loving boy. I have just been noticing so much about him lately and I wish you were here to notice all the change too.

I also caught myself looking at the fridge at dinner tonight. And I locked in on that picture of you in the lite gait at MIPT. And next to that is the card I made to send to people when you had passed. It had that picture of you coming home from your second spica. And I thought about how much I missed you and how much I missed holding you. And it struck me (again) how hard it is that life just goes on here. I was picturing Daddy, Ethan and I sitting at dinner through the years as Ethan gets older and how our memories will be stuck with you at 4. Ethan will be turning 7 in January which all of a sudden seems old. And I just kept thinking of us sitting around that table for years to come and Ethan being a teenager and our memories still being of you as 4 sitting in your chair at the table with us. It just is sad. I miss you and everything about you.

Love,

Mommy

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