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Archive for November, 2011

Lake Placid

Dear Jakey,

I write to you tonight mostly because I just want to remind you how much I love you and how much I miss you. We are getting awfully close to a year without you. Tonight while I sat in the playroom with Jake Muffin, I looked at some photos on the wall. One of the photos was of us in Lake Placid. We were sitting on the sand at the edge of the lake and you and I were both enjoying the cool water. It is one of my favorite photos. The other one is of you in my old Gucci’s on the beach chair. Daddy never liked that picture but I always loved it. Not everyone could rock those shades, but you could.  I could remember us sitting at the beach in Lake Placid. I can almost feel us there as I write this. I can feel the cool water and you leaning against my legs. And us watching Daddy and Ethan in the paddle boat.

Jakey, I just miss you. I just want to get through the next few weeks. I want to fast forward to December 9th when we are driving to Lake Placid. I can only imagine that is why I was so focused on those pictures from Lake Placid today. I know that you loved our visits there and I know that we will all be there in a few weekends. I just can’t wait to get there.

Love,

Mommy

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Gratitude

Dear Jakey,

Happy Thanksgiving a day late. It was our first without you, although that is not entirely accurate. You were with us, if you weren’t I don’t think I would have been able to relax and enjoy it as much as I did. You continue to be so incredibly present with Ethan and I so appreciate his bluntness. He talks about you without thinking how others will react and I need to respond which helps keep you at the forefront of it all.

The day before Thanksgiving I read a blog by another mom. She wrote a piece about special needs’ moms begin more thankful than normal moms. As I started reading it, I wasn’t sure what to make of it but it was really well-written and right to the point. And it reminded me so much of my life with you and how much I loved it and how thankful I am for the time we had together. She wrote about the assumptions parents can make when they are blessed with healthy, typical children. They might wonder if they will play sports but with that wonder comes the assumption that they will walk independently, be able to go up or down stairs, hold their head up, have enough trunk strength to even sit – things that most moms don’t have to consider. It goes on and on about everything from friendships to education to marriage. And I remember having countless conversations with my friends about all of these things and always thinking about it – thinking about the path we were on for you and how you were not going to ever have a girlfriend or get married, or walk across the stage for graduation or get a phone call from a friend or make a goal in soccer or go away to college. Or even get in trouble for talking back or not paying attention in school. All the things that people take for granted would likely never happen for us. But the thing was – I know it made all of us gain such an appreciation for things that I would never have changed it. Obviously I wish you were able to enjoy the good things in life a little more vividly – the joy of running or the satisfaction of being able to express your wants and needs. I wanted only the best of everything for you but I know that you were able to be happy with the simple things – the kisses and cuddles and that you appreciated what was really important. And that is your legacy – it is what you taught us. And I see that Ethan learned it and will one day share it with a family of his own. And on this first Thanksgiving without you, I couldn’t be more proud or happy that you are my son.

With love and gratitude,

Mommy

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distractions

Dear Jakey,

I have found myself restless the last few days and am grateful for the distraction of Thanksgiving. I keep picturing you last year at Thanksgiving dinner at Prime. You were so handsome and so brave. You were in your spica and I am sure you weren’t overly comfortable but you sat in your chair and all five of us had a great time together. As much as I enjoyed that dinner, I am not sure that I could have bared to be there again this year so I am glad we are home. I started cooking a little yesterday and got up this morning to do some more before we leave to go get Sarena. Weather looks like a big mess so I think we are going to be leaving with plenty of extra time. Either way it will be a long day. And a different day. I never went with Daddy for these trips. Ethan has but not me. You and me always stayed home. And I miss that extra time we had together. Anyways, these days are chock-filled (again) with so many memories. Last year’s visit with Sarena was the last time she saw you alive. It was when we took that awesome picture of the three of you with the reindeer headbands. That bittersweet picture because when we took it I was so proud of how alert you were, but after what happened I looked at that picture and thought I began to see that sadness in your eyes. I wish I knew more of what you were thinking or feeling those last few days. I miss you so very much my guy.

Love,

Mommy

 

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Dear Jakey,

It is with some hesitation that I write to you tonight. It was a year ago when we went to MGH so that you could get your Spica cast put on. It was about this day, a year ago, that I wrote a letter to you called Love Story. I remember so clearly how I felt a year ago and how I felt when I wrote it. And it seems wrong how much is different from then.  A year ago it was like this:

Dear Jakey,

This is actually not just a letter to you but also to Ethan and Daddy. It is really a total love story of our family. I could not be prouder of you which pretty much goes without saying. You had an impending fracture for at least two weeks, maybe longer who really knows. You ponied up through that, working through all your therapies. And then it breaks. You tolerate a splint for two days pretty much like a champ. And then we drive to Boston, with your broken leg and spend 9.5 hours in the ER. I have to think that most 4 years old couldn’t endure such trials and I am not sure that many families could either.

Your brother said to me this morning – is it okay if i love you, Daddy and Sarena a little bit less so that I can love Jakey even more? He recognized what you went through and just wants to try to make up for it. He loves you so much that he too spent the 9.5 hours in the ER with us – even though it meant he missed two days of school (you know how he is about school). 9.5 hours anywhere is a lot – let alone essentially sitting in one small room shared with a boy with pneumonia . He was really amazing. He listened carefully to the doctors, drew enough pictures to make a book, played with all his battle force 5 and was overall amazing. He had such concern with the whole IV situation – and could watch better than me. And was very watchful when they were sawing off parts of your cast. There aren’t many 5 years olds who could do that and I don’t even think many kids twice his age could be so well-behaved.

And then there is your Papa Smurf. We are so different – him and I, yet the combination of us both makes me feel that you could not be more protected or looked after. I am good about hounding the doctors and keeping their staff up to date and you on their mind. I remember all the meds and various changes and the amounts given for all your countless sedations. I can rattle off what worked when and what never to use again. I can talk endlessly about dates and times when relevant things occurred and I can make a good, reasonable case for things to go the way we want. Your daddy however is your true defender. And he is who Ethan learns his bravery from. Daddy can tell them all there is to know about your veins, which ones work, which ones will collapse – stuff that for whatever reason makes me stand in the corner saying Hail Mary’s over and over. He also will never let anyone get side tract from the goal and purpose. He will stand up for you when people start to comment about your twitches or other idiosyncrasies or start to go down another path. He won’t let it happen. Ever. He has your back more than you could ever imagine. I knew last night when all things were falling into place that he was the man to be in the room with you and that he would stay in control regardless of what chaos came about. I knew when it was the time to take Ethan out and color with him outside the door. I hope you don’t think I abandoned you and I am pretty sure you know I never will.

When we left with you yesterday, even though it was 10:30, I couldn’t have been happier. We left with an expertely put on spica cast, put on by Dr. Grottkau and an impressive team. We left with you only mildly sedated and having never lost consciousness. We left without going through the whole crazy admittance process that we were supposed to follow. We made it happen in the best way we could and I hope you felt the love surrounding you.

So here we are again, Jake. It is like rewinding 6 months – You in a body cast needing to be readjusted every few hours and all the details of spica care I had hoped to leave behind. But I welcome them and know things will be fine and if all goes well you will have it off before Santa comes. Stay strong my incredible boy.

Love,

Mommy

 

Now there is so much that is different but at its core the letter still speaks to who we are. We are still a mother, father and brother in awe of you. In awe of all you endured and in utter devastation that you left us. Tonight at 8:21, I think of last year. I remember you were about to be seen by Dr. Grottkau in a small OR in the ER. He had worked clinic all day and because he is such a good man who loved you and was in a position to make it happen, he came to the ER and did the job himself. I remember vividly how I felt that day and as I sit on the couch tonight I can see us sitting on the table in that small room. You were in the red stroller with your leg in the splint. Ethan was coloring and Daddy and I were sitting. I remember waiting all day. And somehow even though it was 9.5 hours, it wasn’t awful. It was fine because we were all there together, the 4 of us. And we knew so well how to make it okay. We balanced each other and made each other stronger. And we did it for you. I just think of those days and I miss you so much. We are still trying to figure it out without you. Sometimes it seems like we can so easily lose our balance now. And sometimes it is just so hard to regain it.

Love,

Mommy

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memories

 

Dear Jakey,

As per usual, I have spent a good portion of the day thinking about exactly one year ago today. And because your mom is a weirdo I remember explicitly that one year ago today (today as in this particular Friday in November, not the actual date) is the day that I was brave enough to leave you at school for a longer day and let them feed you without me hovering over you and micro-managing the whole thing. And it was the day that Beth was so proud and that you ate all of your avocado and egg meal for her. And that we went to the Mexican Connection for dinner and sat in the second room at one of our favorite tables and Heather was our waitress. And Heather commented on how alert you were and how you were following her with your eyes. You were off the clobazam and it was the best damn day you had in a long, long time. And today,  I am trying so hard to hang onto the pride I felt and how close to you I felt. The reason it is so hard is because I know that tonight is also the night that when I re-adjusted you, your femur broke. And it was the night you screamed in agony for so long and it was so hard to comfort you. And tomorrow was the day that we were supposed to get you and Ethan’s pictures taken with Santa and then have dinner with G-Pa for his birthday. Instead you were in the hospital. And as we now know, it was the very beginning of the end.

But today, I am remembering so vividly how strong you were and that feeling of pride that you gave me. A feeling I will never quite have again. And I am hanging onto every second because next year at this time it will be a once removed memory and I need to be able to hang on to this until I make it up to see you again.

Below is the letter I wrote you 1 year ago, I want you to remember (and me, too) exactly how I felt. I miss you so very much my little peanut.
With so much love,

Mommy

 

11/19/10

Dear Jakey,

I need to take the time to count my blessings. I know I can get all negative and worry about your weight or your night’s sleep (actually lack of) or your poop and can get a little obsessive. But the fact of the matter is I have lost count of how many people have told me you look so great this week. And by great, they really mean alert. You are awake. There was a point not too long ago where I was writing to Dr. Thiele begging her to help me help you because all I really want is you to be able to participate in your own life. And I think we are getting closer to this each day. The hardest part of being your mom is that sometimes, or actually a lot of times, it is about faking it. People comment about you being such a sound sleeper and I have to smile, nod and agree. Or people tell me how envious they are of you because you are asleep in the stroller – really how many more “what a life” comments can we take? But you my dear, are joining in – you are keeping those eyes wide open and you are using them to see and participate in the world around you. And I couldn’t be prouder.

Today alone you got three notes home from school – one from Beth about how great you did all day playing with ooblick, the light box and other toys. One from Nancy about how alert you were for the whole PT session. And one from Stephanie about how great you ate at school today – your first day eating without me there! I couldn’t be prouder! And then Dr. Kang was clearly excited as I think this was the first time you were ever awake for an appointment with her! And she noticed how hard you working to get your eyes to follow her. You are awesome. And it doesn’t even end there – Heather at the Mexican Connection had to stop and comment on how super awake you were. It makes me so happy that we got rid of that clobazam and brought you back to your own life. We are trying to get rid of some of those annoying seizures that have come back too but hope you are happy too – and that you will take some extra lip smacking, teeth grinding and twitching to be a part of it all. I can only pray that it means as much to you as it does to us. I am so lucky to be your mom and love you more every minute of every day.

Love,

Mommy

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cycles

Dear Jakey,

I am sorry that it has been a week since I have written. For a while everything was seeming so intense and I almost felt like I was drowning in my grief. I just couldn’t quite keep it together for too long. And then I snapped out of it. Or at least felt more like a functional human again. And then it is almost like I tried to forget for a while. And I couldn’t even write. I still talked with you a lot. But when those moods come over, writing is too hard -it just becomes another reminder that you aren’t here. And now I am somewhere in the middle – not quite drowning but not denial either. It is funny how almost a year later the cycles remain the same.

Days are blending a lot lately. And Jakey, my memory is shot. I find myself constantly checking my calendar because I am sure I am missing something. And I am so distracted – like a kid with ADD I just can’t focus on anything. The other day, or maybe this morning, I can’t really remember – Ethan reacted to something on the TV. There was a commercial that referenced a growing family. And he just said, almost to himself, “my family isn’t getting bigger, it’s getting smaller”. And that is true. Simply said, yet almost haunting because it is something that only the three of us know – the grave impact losing a vital member of your family has, the impact of losing you.

I miss you so much. And it scares me. I am scared of how time keeps making you seem all that farther away.

Love,

Mommy

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overwhelming

Dear Jakey,

I have found myself so overwhelmed lately with it all. And yet I find myself today sitting here feeling quite proud of not only us, but of all those around us. I can’t help but be reminded of the good in everyone and I thank you for being the catalyst for it all. Today’s mail brought some pretty amazing things. A long time ago, my friend Lisa put me in touch with someone who wanted to help JHFH. She works at a place where they have dress down day and everyone who works there can opt in by making a donation to a specially designated charity. She got us on the list and last month was our day and today I got a check for $552.00 for Jake’s Help From Heaven. Amazing. And that is not it. We also got a donation from a couple in Gansevoort who saw the article in the paper and wanted to help. And we got an awesome thank you card from a family we were able to help. And we also received some of a missing piece of an older application so that we can hopefully begin to move forward in helping someone else before our next meeting.

And Jakey, that is not it. I came home from my run today to find an email from a friend who started a new business and is thinking of ways to help too. She is willing to donate a piece of each sale to us for the holidays. And on Monday we met with someone else who read the article and wants to help. We picked a day to do a Juicy Burger fundraiser. And as I sit here writing to you I am remembering people I need to get back in touch with who want to drop off raffle items for our next fundraiser already. People are good Jakey and I think I spent a lot of life not always sure I believed that. And now, through you, I am trying to remember that. And not sweat the small stuff. Everyone, or at least most everyone, is trying to do the right thing. And lots of people are helping us help others. And I know for a fact that you are responsible for so much of the good in my immediate world. And once again, I am left thanking you for my time with you and for all you have given me. And of course, missing you more than you can ever know.

Love,

Mommy

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