music and memories

Dear Jakey,

I usually just write you letters as they come to me. Lately though that has been harder.  Even so I usually manage to catch myself up within a few days and then I can write.  Generally, I write always in one shot. For some reason or another this week I haven’t been able to. The letter I want to write has been in my head since Tuesday yet now it is Friday and I have tried twice to write it but just have gotten too tired and stopped. I refuse to not get this out now though – my head is all over the place lately. I am trying so hard to make your event perfect but am also so sad about it. I am not sure what to make of it all.  But  now I am going back to Tuesday because it seems to symbolize where I still am which is all over the place: happy, sad, up, down, and everything in between.

Your birthday is coming nearer. And your event is even sooner. Tuesday morning was pretty great. Ethan and I had a nice morning. I snuggled him up and he hugged me tight. I asked him if would always love him mommy most. He quickly answered no. And then told me he could only love me 2nd because he would always love you most. How can I fight that? I will gladly come in 2nd to you. And our morning continued nicely. When we went to see you, I told him how I was sad because I hadn’t seen the cardinal since the time about two weeks ago when it practically took us (me and E) out. We talked at your grave and it was one of those peaceful, wonderful visits where it all just feels right. And I shared with Ethan how I was sad that we (I) hadn’t seen the cardinal for a while. I told him that I kept looking but no luck and I told him that when I was running in the state park I was hoping to see you there because I saw you there before. And then we got back in the car to make it to school. We were driving out when Ethan yelled at me to stop. He said he saw you, he saw the cardinal. And at first I didn’t believe him, I didn’t see and then there you were. Sitting in the tree. We stopped and we watched and in that moment – we were happy. We both really believed it to be you. And then you turned and really looked at us. And all I can really say about that is thank you. I (we) really needed it.

And the morning then had me thinking about lots of different things. I dropped Ethan off and went to do errands. I had to go to the Grapevine to pick up donations for Sunday, and then to AC Moore and Staples. On the way there I heard a song on the radio, a silly song by the Pussycat Dolls. It was popular back when I met your Daddy and it used to be my ring tone on my cell phone. It was one of those moments where the song brought me back to a time so long ago – a time before I knew what it was like to be a mommy. Before I knew the love and before I understood family in a whole different way. Anyways, I don’t really remember the name of the song but the whole catch line was “Dontcha wish your girlfriend was hot like me?” And for some reason I remember how Uncle Steve, your godfather, used to make fun of me for having that as my ringtone. And it just took me to a different time.

Later in the day I heard a song that took me to a different day – much further back – about 17 or 18 years ago. Again, I don’t really remember the name of the song but it was a poppy, dance song with the lines “100% true love”. The day was a long time ago in Boston in the summer. It was Gay Pride weekend and I was celebrating with friends. It was a beautiful day, we partied in the streets after the parade and ended up at a big block party and then a club. It was a great, happy day. And it got me thinking that things were much simpler then – in so many ways. And it also got me thinking about all the pieces of the puzzle and all the things that make us who we are – all the things that end up defining us. And sometimes when I think about that I get sad because you didn’t get to have all those fun life lessons. Your life lessons were serious and severe and quick. You learned more and were so much wiser than so many in such a short time. And you taught me more than most people would ever be lucky enough to learn.

All this to say that I try to remember the journey. And I try to remember what Dr. Weiss talks about – about life being so multi-dimensional and it is so much more than just what we have in our physical bodies. And that there are a myriad of lives and relationships we experience and that we choose what our experience is. And that means you chose me. And I feel honored, brokenhearted but honored.

With so much love,

Mommy

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seizures

Dear Jakey,

At Target today I was in line behind a woman. She was talking to a man and I wasn’t really paying any attention until she said     ” …is having so many bad seizures” She was talking about her kid. She talked so matter of fact – the way only moms of kids with seizures can talk. When you are no longer as scared by them as you once were, or as people are when they don’t know someone with seizures or how many people can have in a day. And in that way where you keep talking about it, trying to normalize it but deep down you are still sort of petrified. She was optimistic – talking about med changes and how in a few months it would be under control. She knew that all changes take time with the brain – and it isn’t like you just ride it out for a few days, but that these ups and downs often come in multiple week or month blocks. She was matter of fact, yet still scared and she said what I said so many times in my life ” the brain is such a weird thing and we know nothing about it”. It felt weird listening to someone else talk about the things I used to focus on so much. And then it felt even weirder because I would trade places in a heartbeat. I would so happily deal with seizures now. Because if I was dealing with seizures you would be alive.

It isn’t any easier peanut. It is hard without you. I miss you a lot.

Love,

Mommy

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just sad

Dear Jakey,

We went to the Connection tonight. We went with Karen and Gary. It is always a little weird being there without you. It is great being there with people who loved you too. And Karen definitely did.

And it is the night before Easter. Which has been kind of weird for me. The picture over Daddy’s and my bed is from Easter last year. And that picture is also on the website, the brochure and was in the article in Saratoga Today. It is a beautiful picture and an amazing picture. It is weird to me because I remember that day so vividly and it is hard for me to figure out life without you. Like tomorrow is Easter and I am having a hard time with it. Holidays have all been hard but it is almost like I don’t want to celebrate them without you. I didn’t even buy Ethan an Easter outfit. I just can’t beat last year’s outfit for you guys together. I don’t even want to try. And I made Ethan’s baskets. And I bought you bunny ears – just cause that is what I always did. But then your basket was there and I had to make one for you too. And it just feels funny. I am just not sure how to move forward without you.

Yesterday was Ed Loomis’s birthday. I told you about writing him a letter. I left it for him and his mom wrote back. And we talked for a long time yesterday. She spends his birthday with him at his grave. The whole day. She also goes to the crash site. And she is a mess. It sort of haunts me. People always say things like they don’t know how I do it. How we (daddy and I ) move forward. I guess I don’t know how not to and then sometimes I feel bad. I feel bad that I am plugging along. And I feel like because people see me being a functional person they might think that I am okay, when I really am anything but. I am a mommy of two with only one to raise. It will never be okay and it just sucks. But I guess it is not in my nature to be a mess. At least not a public mess.

I miss you so much Jakey. It feels so weird without you. I guess I still have a hard time really believing that you are truly gone. And I can’t really accept that going to see you a few times a day at your grave is okay. It is not okay. I try not to think about that night. When you were dying on my lap. When I couldn’t save you. It just sucks so bad. I wish I knew you were going to die and I could have stopped it. I didn’t know. But I am sitting now exactly where we sat. You were on my lap and I knew something was wrong. I knew you were too sleepy all day. I knew you were having weird seizures and you looked so very skinny and frail. And I was so scared but not that scared where I thought you would die. Just scared. And then the brown stuff came up. And then you died. And I hate that moment. I hate that it was me and Ethan. I hate that it was so fast. So incredibly fast.

Jakey, we are working so incredibly hard for your foundation. And I like it because it keeps me busy. But I hate it too. I hate that my energy is on that and not you. I hate that every moment of my life from here on out is fucked up. And I am sorry to say it like that but it is true. Every moment it second guessed or feels weird because it is not how it was supposed to be.

I love you my little peanut. I hope Heaven is real and all that I want it to be for you. And I hope I see you again. I miss you.

Love,

Mommy

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birthdays

Dear Jakey,

So I wrote another boy a letter today. Another boy in Heaven. I think you might know him because after you died I asked him to watch over you. And in this crazy world of belief and faith and life after death, I am trying to find comfort in it all and believe in it. Ed Loomis died a few years back and had he still been here on Earth he would turn 20 tomorrow. A drunk driver killed him when he was only 17. And he is buried close to you. I know you know who he is. I see his Dad sometimes. He doesn’t seem to go every day like us but it seems like when he goes he stays a real long time. Sometimes he just sits in his truck. You can just tell how he still misses his boy so much. Anyways, since tomorrow is his birthday I wrote him a letter and left it at his grave. I just wanted him to know how much his dad misses him and how I trusted him to look after you even when I never knew him on Earth. I hope his parents don’t think I am totally wacko. We’ll see.

Anyways, I miss you. A lot. I keep picturing you and getting so upset that you are gone. Each day that passes is simultaneously harder and easier. Easier because like all things – it just becomes a habit. I have become used to not making you food or mixing meds. Or worrying about feeding you or checking temperatures obsessively. All those things have subsided. But each day also brings me a day further from remembering your smell or when your  keto breath was kicking or the way your hair looked after the bath or the way you looked on my arm when you fell asleep. Ethan and I were just talking about the sneer you used to make. I just want it all back in real-time – not in memory or photographs but in the here and now. And that doesn’t get better with each passing day. It gets worse.

Lots of love,

Mommy

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scrambled thoughts

Dear Jakey,

Short note to you about your dad. We used to lovingly call him Papa Smurf and I guess we still do, but maybe not as often. I wanted to remind you a little about how much he loves you. I know he talks to you a lot and that is between the two of you  but every once in a while I am struck by how much the loss of you impacts him too. I mean I know I shouldn’t be, but I am so public in my missing you and so wrapped up in my own grief that I am not sure I am too good about being aware of others. Anyways, not the point. The point is your Daddy, in his quiet, strong way , misses you more than you can imagine. He has his routines as a way to keep you close. And Sunday reminded me of how important those routines are. We were out and about – I went to see you after church and brought you a palm. Daddy went for a run before I left for church and saw you then. We brought Ethan on his way to a birthday party and then we went home to do whatever. Ethan wanted to eat at the Parting Glass so we went there – he actually wrote about it in his book with Mrs. Somoza, about how that was a symbol to him of what life was like when it was normal – and he is right, how many times did we walk around the corner to go there? After dinner, we came home and Daddy showered, and Ethan got ready to shower. And Daddy remembered we didn’t say good night. I had already said my good nights but in his mind he hadn’t. He loves you so much Jakey, that he couldn’t bear the thought of not saying good night to you. He needed someone to do it. And since I hadn’t showered (and would never miss an opportunity to see you) I went to say good night. People often say that you don’t need to be at the grave to say good night – and we all know that better than anyone – but it is nice to have that routine. People say that when they still get to tuck their kids in or have other routines with them. We have so little that we grip to what we have. And Jakey, your Daddy always wowed me with his resolve and love for you when you were first sick, and then throughout our journey, and again when he spoke at your service. And through this journey we are continuing for the rest of our lives, he is our rock. I know you miss him but I also know you are helping keep him strong. Until we are together again, we all miss you terribly.

Love,

Mommy

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flashes

Dear Jakey,

Yesterday I was at the Columbia Pavilion. I knew I was going there and in all honesty I didn’t think so much about it. I pulled in to park and I gasped. I remembered so vividly the last two years at the stroll. And it was weird to be there. And then later Ethan had his first t-ball practice. While Ethan’s t-ball season last year was obviously mostly about it, for me it was more about you. I usually walked there with you. It was weird being there without you. I guess that with each thing, big or small, it takes getting used to without you. Everything is an adjustment lately. And I just miss you.

What I think I find the hardest is that I really just don’t knew when or what I will miss you. I mean I miss you a lot always but  sometimes it hits quick and hard and I don’t know what to do. It is just a moment but in that moment the memories can come flooding in. Fast and furious. Like yesterday, I flashed when I entered the Columbia Pavilion. I thought of both strolls, I though of how sick you were at the first one, I thought of all the people – so many people, I thought about our friends and family who were there to support and work and walk. I thought about my nerves about talking in front of people. I thought about it all but in a flash. And then I did my run(s) and it was fine. And I thought about how I am glad I ended up there now because when I go to this year’s stroll, while emotional, it won’t be the shock of being back there as well.

And then the t-ball practice. I felt bad for Ethan because I didn’t really want to be there. But at the same time, watching him play and do so well was cool – he seemed so much more focused and  aware of what he was supposed to do. And Daddy is such a good coach. And the team seems cute and fun and I even got a little excited for the season. It is just so hard for me to separate what is now and what was then. I missed the end of the season last year because you were in a spica. And when we left practice yesterday and drove down Lake towards home, all I could think about was the walk there with you each game. Daddy and Ethan got there early. And you and I met them there. It is just how it was. And now it is not. And it made me realize that with each season until December 8th – for as long as I can look back and say “Last year, you were here” I will come across these things and I won’t be sure which ones will sting so hard. But as sad as I am, I am grateful for the memories – that I get to relive our life together. I am grateful for my time, even though it never should have ended so soon. And I am grateful to have been your mommy. And to still be your mommy. I love that of all the people who care about you, I am the only one that gets that spot. I love you more than you can imagine and my heart will always be a little broken without you.

Much love,

Mommy

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Jake-a-saurus rex

Dear Jakey,

Mommy has not been sleeping well. Last night, I decided that I would change your letters up a bit. I was thinking that periodically I would start writing to you about your people. People who knew you well when you were here on Earth. It will be in no particular order but it will cover the whole big crew of important people. We have time. Our time together, here on Earth, is over but our new time together is forever. And one day, we will meet again. So until then, I want to remind you of those who love you.

The first person I want to write to you about is Miss Briana. Last night when I couldn’t sleep I was thinking about her. I was thinking about how when you left us, she was the first person I wanted to call. I was up mostly the whole night and it seemed like forever until the time was appropriate enough to call. And then when I did I remember blurting it out. And I remember she was blown away, yet was such a good friend that she stayed strong. I can’t quite imagine what that call must have been like. It is similar to when Miss Kelly sent me a text to ask if I was going to yoga on the day after you passed. I answered her by saying that you had passed. Must not have been an easy text to receive. Anyways, more about Miss Kelly later. Back to Miss Briana. I called her with the worst news ever. You died. It still takes my breath away.

The thing with Miss Briana is that I always described her as the one who knew you best outside of family. I met her when you were two months old, a few weeks after we moved to Saratoga Springs. Ethan and Ava became (and still are) best buddies. And Dean was in her belly when we met. And you were the little guy in the orange stroller with Ethan. It was such a good match from the beginning – Ethan and Ava were fast friends and I liked the mom! I learned quickly as a mom that just because you have kids the same age does not mean that you will be friends. In Boston, I had Miss Tracy (that will be another person) and Miss Mindy (yep, another story) but in Saratoga Springs I was meeting new people (Miss Trish will be another story).  So, somehow or another Miss Briana and I became friends. And because of that she got to know you so well. She watched you when you learned to crawl – even when it was only it one direction: backwards! She watched you back up under the couch of our old house and back under our dining room table. She watched when you started to sit up on your own at Roc N’ Tots. Ethan and Ava danced and did their thing and I was able to set you up in the corner, of the old Y on Broadway, and you were such a good boy. You figured out how to watch yourself in the mirror and make faces and just be so chill. Who would have thought that a three-month old could be so easy and fun?

And when you got sick and we were at Children’s, I remember when Miss Briana was in town and picked up Ethan and took him to play with Ava. Ethan was thrilled and I got to talk to my friend, even if it was in the lobby of CHB. And when we got back to Saratoga Springs, she was key in helping us settle. In fact, at some point we started doing a babysitting swap. Each week we would switch off – one week Daddy and I would watch Ava and Dean so that Miss Briana and Jason could go eat and the next week we would leave you and Ethan. I knew that when I handed you over to Miss Briana she would sit with you and keep you safe. I didn’t feel that way about many.

And buddy, I can’t tell you how many times you hung out on Miss Briana’s couch. Last Wednesday was my first day there without you. It was weird but I am so glad I did it. I thought of you the whole time but I think that is okay. We (you and me) would spend lots of time there over the years – in the morning for coffee, at lunch for pizza and sometimes for No Rules Fridays. We were there a lot and I knew you were comfy there. And so was I. So comfy that  sometimes you puked and sometimes I cried. It didn’t matter. We were comfortable and surrounded by love. And it took me a while to be able to go back. But I am glad I did. It makes me feel happy to be around those who knew you so well and who I knew loved you. I even remember that Miss Briana’s dad always cared so much about you and always offered to hold you when he was around. It is all such good stuff, Jakey, but also so sad. I just miss you and I miss everything about our life together. It is hard to carve out life without you. Nothing is the same. I see it all different. I need to remember you, be a good mom to Ethan and try not to be too jealous of healthy kids. I need to get used to the fact that I am raising a kid without a sibling which isn’t what I planned to do.

And I will end this with a cool memory. When you turned 2, Miss Briana (and family) got you the coolest shirt. It had a dino on it (which was the theme for your party) and the dino was called Jake-a-saurus Rex. It also said “Roaming New York since 2006.” It was the best. I found it today when I was going through clothes. The best shirt ever.

With love,

Mommy

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waves

Dear Jakey,

Getting ready for wave riders soon. I sort of am dreading it yet I had the chance to miss it today and it didn’t seem right. The whole thing is so sad but I know Ethan likes it. He is so wise about all of this stuff, Jakey. And handles it so maturely. More mature than me at times. Last night we were talking and he said he tries to forget the day you died because he doesn’t want to be sad. The way he said it seemed so honest and yet so wise. Trying to forget is actually probably a little self-protective. He isn’t trying to forget you, he is trying to forget those moments leading up to when we lost you. He knows that in those moments everything changed. And he learned some hard lessons for an almost 6-year-old.

He also asked me yesterday what happens if a kid is in the car and the person driving dies. He knows that life has no guarantees and that you can’t assume all will be fine. We learned that lesson as a family slowly over your 4 years, 7 months and 4 days on Earth. He asked if it would be okay for a kid to call 911 from the car if that happened. I told him yes.

Love,

Mommy

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a year ago

Dear Jakey,

I was emailing with another mom who lost her son about 10 months ago. She said that she kept thinking about how last year at this time he was still alive. I know what she means. I remember when you first got sick and we spent all that time in the hospital. That first year after was so hard because I could always remember a year earlier when you were healthy and what we did. It wasn’t until it was over a year that those memories weren’t as prevalent. They never went away – thank goodness, because they are part of your story too – but they weren’t as painful. I wonder if this will be the same.

Last year I remember being so anxious at this time. I remember how great you were doing, but I also vividly remember all we had ahead of us. Your liver biopsy was on April 27th and your hip surgery was on May 18th. I remember being so scared about the anesthesia, the hospital stay and I remember thinking so hard about what I would do if you didn’t make it. I think I had a massive pit in my stomach for two months. I also got your name tattooed on my arm. I got it on April 26th as my attempt at good karma. And I vividly remember knowing that if anything happened I would put your dates above and below. I need to get that done. Not sure why I have put it off but it I haven’t done it yet and I need to. A year ago though, everything was different. You did awesome with your liver biopsy and that ended up being a really great family experience. It was when the amazing nurses and doctors at MGH let all of us, not just me, stay with you. They brought a cot in for Ethan and he slept right next to you and me. And all four of us were together. And then we went home. And your liver was functioning well – no one understood why it was so atrophied or why it still worked but it did. It was another unknown piece of the puzzle.

And then there was your 4th birthday. We went to Montreal. I dread the thought of ever going there without you. You are all over that city. Another place that we felt comfortable. And had such great times. I remember like it was yesterday sitting in the park, feeding you and snuggling while Daddy and Ethan flew their Batman kite. Such good times.

And then was your surgery. I have never been so scared in all my life. Dressing in scrubs and kissing you goodbye was the hardest thing I ever did – well, the hardest thing until I had to close your casket and carry it out of Tunison. And even through that over 6 hour surgery. You did so good. They told us your bones were so small and fragile and you would have to be in a body cast but you did great. So great that we went home the next day. And through all of that followed, the constipation, the pneumonia from the cast, the family camp out on the couch – that whole three weeks of spica #1 – you were a rock star. And I can remember with such clarity that I can, even as I write, hear the sound of the saw cutting off your cast – and I can picture Ethan standing by you with such seriousness about protecting you. And I remember the next day when you hurt. Buddy, I remember it all. I remember this time of year with such clarity and I remember the fear I had of losing you. And I am struck and devastated that you made it through that all so well and when I did actually lose you I didn’t see it coming.

It doesn’t make sense. You are so close to my heart. I can’t stop thinking about you  – both now and then.

I love you,

Mommy

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nyc

Dear Jakey,

We spent a few days in the city. It was nice but hard. We were supposed to take the train but I had the times wrong and we missed it. So we drove instead. When I told Abue she said things happen for a reason. I didn’t think much of it until just a bit ago. I think she was right. I was really have a hard time thinking about the train. And I kept telling myself it was silly because I took the train to NYC since you left us. But it was different. It was just with Daddy. And going with Ethan would be different. It would remind me of November 6th. That was the last day we were on the train together. It was also the day I think your femur started acting up because it was after that trip down that you started wincing sometimes at PT or when I changed your diaper. And the train was so cozy with you. I got to hold you and snuggle the whole time. And I loved it. I loved it then and I miss it now. Anyways, maybe that was reason enough. Maybe I am just not ready.

NYC was good though, Jakey. I think of you there. I think you liked it as much as I always have. I remember being a kid and being in the city with Abue and G-Pa and always loving the anonymity of it. How it didn’t really matter and no one really cared. No one looked or paid any mind to any one else.  For some reason I always loved that as a kid. And I loved it as your mom because we didn’t get the looks as much when we walked around or when I stopped to feed you in the park. Or at the Museum of Natural History. Our business and life was ours. And there is something freeing about that. Anyways, we were there. We visited with Kir and Mike and Ollie. Fiona and Gracie are coming on Friday. We talked about Nola. And we talked about you. And Kir reminded me that what we have gone through is the worst thing ever. And it isn’t something that you just get over. She told me that when I had a dream about you on Saturday night, it was you coming to see me. The dream was weird and didn’t make a ton of sense. You were in the back of a pickup truck in a seat belt. You could move. I didn’t write it down so I don’t remember much. And I told her and she made it such a positive. She said you chose to come to me in my dreams and it didn’t really matter what happened, just that you came. And she was right. And you came back Sunday night. I loved it. I saw you smile. You called me Momma. There was a whole of other weird stuff and my friend Karolyn was in it. You never met her but she came to your wake. I wrote that one down as soon as I woke up from it at 12:44 am. These visits make me think you agree with what I am thinking about now. That I need to slow it down. I was thinking for a while that it was important to do all that I couldn’t do before, almost in tribute to you. The whole thing about your death not being in vain and all. And now I am thinking that the opposite will be the best way to pay tribute. To remember the quiet in our lives and what we did together. And maybe, just maybe I am ready to tackle that box I shoved under my desk and start the scrapbook. And catch up on the photo books. And start the quilts. I think it is time. And I can make life slow down enough and start saying no and make the time to do them. At least until my pendulum swings back in the other direction.

I am just so very sad without you. The anger is gone, at least for now. It just seems so desperately sad. And long. Life is too long without you. Without your touch. I love you. I miss you.

Forever,

Mommy

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