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Archive for April, 2011

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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