Out with 2010

Dear Jakey,

So it is New Year’s Eve. I am looking forward to a very very low-key night. Auntie Spunky and Dave left this morning. Uncle Steve is here. We are cooking some food, watching TV and missing you. I may not even stay up until midnight this year because I had a tough night last night. I want to see you first thing to wish you a Happy New Year and I want to start 2011 in as positive as way as possible. It has to get better and it has to get easier. I need to remember that you are in Heaven happy and peaceful – probably with a whole set of friends. I know you have Josie, Doris and Alcira up there. But you also have Nola, Hunter, and Jasper to hang with. I bet you have more than we can even imagine here on Earth.

Last night we went to see you after being out and about for the afternoon. Ethan and Spunky picked out a necklace for you and brought it over. This morning Ethan went over each bead and reiterated what we all know but sometimes forget to believe. He had chosen the peace sign as one of the beads and said it was because you were now in peace. It is so nice to think that way yet so very hard.This morning we also saw a yellow rose that someone had left you. I don’t know who but you keep getting visitors and I just love it. I hope you feel the love. We also noticed that the birds had already eaten all the food so we went and got some more and filled it up. You have such a beautiful space.

Before bed last night Ethan asked what I missed the most about you. I told him that I missed holding you. Because I held you so often – to snuggle, to eat, to drink, to burp – everything. I feel so empty. I asked him and he said that he missed holding you too. He used to love when I put you on his lap. He would be so gentle. We all miss you so very much. I know you know that but it is just so impossibly hard.

So Jakey, we are headed over in about an hour to see you again. And then we will be back early. I might run over or maybe we will all walk. Either way we’ll be there early to see you in 2011. I hate 2010 for what happened to us. I can only pray for your continued peace and our strength to keep living and keep remembering that each day brings me one day closer to you.

Love,

Mommy

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Hard

Dear Jakey,

I don’t even know where to start lately. It is so hard to not be devastated every moment of the day. It is almost like the shock and disbelief is starting to wear off and the reality of what life will be like from now on is sinking in. I don’t like it Jakey. And I try so hard to keep busy and stay in the positive but sometimes I just can’t do it anymore. Sometimes I just want to lay in bed, hug your pillow and t-shirt and try to feel you next to me. I am looking so hard for signs that you are here with me that I feel a little crazy. I credit you for everything – for when I sleep peacefully even if for just a few hours, for whenever I feel calm. Left to myself I don’t think I could do it so I think it must be you helping.

I learned yesterday that the boy who is buried near you who was 17 when he passed was killed by a drunk driver. We saw his Dad there when we were seeing you and it is just so awful. I have come in contact with parents who have lost their kids – on a personal level and on a more abstract way and while I find it so comforting, I also find it so damn sad. Everyone is a little bit ahead of us on the time scale – so I guess people make it through this but I just don’t know how. It is so sad to think of how many parents have to visit their kids in graves or have their kids be angels. It is all just too damn depressing.

So Jakey, that is where I am at. I love you to pieces and it would break my heart even more to know that in any way this made you sad. But I do want you know what an incredible part of me you are. You really became such an integral part of not only my life but who I am. My life was about protecting you and being your mom. First and foremost. Everything else (whether it should have or not) came second. And that is why I am so lost without you. And it is why I need to figure out how to keep your spirit alive.

Alright buddy, I love you so much. Help me buddy – I need you more than ever.

Love,

Mommy

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Bittersweet

Dear Jakey,

Today was hard again. They are all hard but some are just so hard. I miss you so very much. Today your absence was just so evident. Ethan was excited to sled in our backyard today. He was so excited to do it all together. Usually, Daddy would sled with him and you and I would cuddle on the couch or I’d feed you or I’d do whatever it is I had to do but I would be inside with you. Ethan was so happy to have me go out too and I loved that. I loved that I could do it and make him feel so good. But I hate the reason why. There are so many more opportunities for me to do stuff with Ethan now. And I try to focus on the goodness it that but Jakey, it is hard. It is so damn bittersweet because all I can think of is why. Why I have more time. Why I can play in the snow with him. Why we can plan a trip for us to go visit Sarena in February. Why I can ski so much more this season. Why I will be able to increase my running distances. Why we can go to dinner whenever our friends get here. I wish it all back to the way it was. When I couldn’t do these things as easily and had to plan accordingly. Life is too easy now yet so incredibly hard. I miss you my little peanut. More than you can imagine.

Love,

Mommy

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Reasons to be Thankful

Dear Jakey,

It is time for another list. I am trying so hard to stay positive and honor your spirit. I was thinking about how hard I tried to stay positive when you were here with us and really how easy it was a lot of the time. I can’t lie to you because you knew how hard it was sometimes but you also know I tried. And I don’t want to start letting you down now. I want to honor your fight and stay strong because I never want you feeling bad about what happened. I want you to know that I think I understand. So, today, December 27th, 2010 at 3:19 pm I am thankful for the following:

1. My Volvo – today when Ethan and I went to go see you, the cemetery roads had not been plowed. Because of my volvo and its 4 wheel drive I could safely bring us to you for our morning visit. It was beautiful and crisp.

2. Friends – we noticed another thoughtful and beautiful addition to your space. A beautiful bird feeder hanging off the tree with a note to you from an anonymous friend. The perfect addition to your peaceful space.

3. Friends part two – last night before the snow we packed up all the gifts and cards people left you into a box. We put it under the Christmas tree with our gifts. It feels nice.

4. That through this devastating time, the kindness of others keeps us strong. And that stronger friendships are emerging.

5. Fame by Irene Cara. I went to warm pilates today and that song was on. I always liked it but as I suffered through Jenilee’s insane ab workout I thought about the cheesy lyrics ” I’m gonna live forever, I am gonna learn how to fly,I’m gonna make it to Heaven. Baby, remember my name” It made me smile and think of you. It also made me smile because you knew my inner geek so well. You would have appreciated the moment.

6. Ethan – his love and compassion stems from you. You taught him so much, more than he is even able to realize right now. But you helped make him such a compassionate soul and you are doing even more now. You also are helping me raise him with some faith and religion. We need it to keep us going.

7. That you smiled and visited Abue the other night. Although I would like a visit and a smile too!

8. Friends again – that we are blessed to be surrounded by amazing folks. And that Steve, Spunky and I think Dave will all be arriving over the next few days.

9. As much as I hate and despise December 8th, 2010 – you spent your time here showing us and the world all that you were capable of. Damn those who didn’t see it. You were so much more than a boy with seizures in a spica. You were strong and amazing and you called the shots. I (mostly) believe you called the shots that day too. And you quietly went home to live out eternity without such hardships. I am glad you were on my lap with me. I couldn’t have it any other way. I will always wish I could have done more but I will try to accept that maybe you were calling the shots.

10. You. I will always be thankful for you. That I got to be your mom. That I had the privilege to take care of you, watch you grow, feed you, bathe you and love you unconditionally from the moment I knew you were in my belly. I am so incredibly heartbroken but know I could only feel such loss since I felt such love. I wouldn’t trade the love we had for anything. I just wish it was longer here on Earth –  but it will never change and never end.

With the most love ever,

Mommy

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our journey

Dear Jakey,

I know I sound like a broken record but I can’t believe you are not here with me anymore. I keep thinking about our life together and I get so overwhelmed. I loved it Jakey. Every minute of it. And I don’t quite believe our life here is over. You were doing so well. And I really felt like we hit our groove. When you first came out of the hospital on May 17, 2007, I was so scared. I wasn’t sure how to be your mommy any more. The 4 months in the hospital robbed me of that. It took me a while to feel confident and get my mommy instinct back in action. We used to go back to see Dr. Yaman every 4-6 weeks. I need to let him know you are gone, I haven’t yet. He will be among the many that are upset. He too worked very hard for you. Anyways, at first Mommy and Daddy were so in the fog – we were figuring out EI and just meeting Karen and Xavier, Linda and Elisa (another person I just realized I haven’t told yet). Everything was new and we were doing our best to understand. We were still in a weird cross of optimism and denial. Not sure what had happened, not really believing it and hoping we would wake up one day and you would be healthy. It took us a while to really go from denial to acceptance. And then another stretch of time to really  become pro-active.

There were so many ups and downs. And devastating reports – from the subdural hematoma to the dislocation/sublexation of your hips. And then the liver, the osteopenia, the protein in your urine (which try as I may no one would deal with). But Jakey, we got good at it. We found doctors and a hospital that fit for us. MGH understood us. They listened when I told them about how you respond to anesthesia, they understood our aversion to hospital stays, they worked with us to get you off meds. They let Ethan, Daddy and I all stay at the hospital after your liver biopsy. They understood us. We had a team – a team that was only going to get bigger and better with the addition of Dr. Eichler and Coordinated Care. I knew how to handle doctors, demand what we needed for you, who to call, what to say. Daddy knew it too – he could talk anyone through finding a vein and he could demand people pay attention to the issue at hand, and not anything else people wanted to fix. And we were on our way to answers. We knew they wouldn’t be great – in fact, we thought we were ready. I thought I was ready even when I read about the outcomes  – that most kids don’t live past five with the types of leukodystrophies that we were looking at, or that the body systems regress. I thought I was ready, but I am not. But now we still don’t have a definitive answer and we don’t have you.

I just don’t get it. You were doing so well at school. I re-read your notes from your last week. On November 19th you had your best day ever. Beth said you were playing that whole week doing so great. And even Stephanie wrote a note on that day about how well you ate. You ate without me. Beth fed you. And you ate it all. That day we went to the Connection. Heather talked about how great you looked. And then the femur broke at 2:30 in the morning. Something we knew was up since November 6th – on the way to NYC. Just so much information in my head but it still did no good.

We were so adjusted to our lives. We had Cait after school some days to free me up. We were planning our trips for your birthday – NYC for your 5th. Disney in the summer. A long drive but another fun family adventure. We were so good at making a good life for all of us – adjusting along the way to what we needed to do for you. We were good at it – and now it doesn’t matter.  I had also started to feel so supported – and began to find a good balance between it all. I could advocate for you, raise awareness and have fun doing it. People always asked me how I stayed positive which I never understood – how could I not? I had you. You didn’t ask to be unhealthy so how could I ever disrespect you like that? I always hated the pity parties people had/have.  Anyways, we finally were adjusted. I knew how to be a special needs mom. And now it doesn’t matter. Now I have to go through it all over again. I have to get used to being that mom who lost her son. I don’t want to Jakey. I don’t want to get used to it. I don’t want it to be true.

Sometimes when I am feeling stronger I think that all this was coming together. I remember how amazing you were – how up until the last-minute you fought. Your body was failing you – and if I am honest and look back at 2010 it was tough – liver, hips, bones, kidneys, auditory neuropathy and the ever-present seizures. But you fought through it – you also got off clobazam, you were so alert, you beared weight, you swiped at toys with Xavier, you stood in the stander and walked on the treadmill, you were tracking again and you worked so damn hard with everyone. People may think that you were deteriorating but you weren’t – actually the opposite – as your body gave you challenges you fought through it and did better. So many people at the wake, kept saying that – “I don’t get it, he was doing so good”. You had the worst year and the best year all in one. And then it was over. How did that happen?

And then I think about all the things that in the back of my subconscious I was prepared for. Not really but it wasn’t a shock. The walk I took that made me realize where I wanted you buried. The book I read about Hunter and his mom and the tears I shed. The ideas of Heaven. The tattoo of your name in Chinese – grateful, to overcome – the knowledge that when this happened I would put your dates on it. All of the things I had already thought about. Were you slowly getting me ready? Is this the plan? On my strong days, I belive it – I believe everything happens for a reason, that everything gets us to wear we are supposed to be. I just wish this wasn’t our path. I wish our path was like the countless other intact families. But Jakey, you will always be 25% of our family. We will remain a family of four. A little atypical but it is how we are. I love you to pieces. I hope you are happy. XOXOOX

Love,

Mommy

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From Ethan

Dear Jakey,

This letter to you begins with a letter from Ethan. Last night we were sitting quietly. Ethan didn’t feel too well. In fact he projectiled all over me yesterday afternoon. For those who knew us well Jakey – they know that is something I was used to. In fact, I remember the stretch we were having a few months ago when we were having some difficulty eating (only to find out it was your CO2 level) and I was on the phone hysterical with Miss Bridget and then sat on Miss Briana’s couch crying. Anyways, when your brother puked all over me I sort of wondered if you were trying to communicate with me.  But I digress – Ethan and I were sitting and he asked if he could write in his book. Miss Bridget gave me a book to write in but Ethan took it over with his writings about you. I also write some of the things him and I talk about when we talk about you. Anyways, he asked if he could write and if I would help him with some words he didn’t know how to spell. This is what he wrote:

I like my little brother. It is Jake. I wish my brother was here. I wish my Jake was here playing.

Jakey, we are all so impacted by your death. It is so hard to even say that. We are all going along, trying so hard to move forward. I am reading about Heaven, trying to understand and feel better about it all. I still am so broken-hearted over the night you died. I hate that I didn’t see it coming. I always prided myself in being your protector and somehow just didn’t see this coming. I wish I could have changed it. I am having that hardest time with some seemingly small things. I could barely take pictures yesterday because I can’t stand that there will be no more pictures of you. The ones we have are the ones we will have forever. Ethan will grow older and there will be all sorts of pictures but you will always be no older than 4 years, 7 months and 4 days. The only photos I have of you on that day are when you were dead.

On Christmas Eve, I did take some pictures though and on a few there were some weird shadows. I thought maybe it was you. I am not really sure I believe that but I would like to. There was also a weird imprint in the window  – with an arm that looked exactly like yours. Was it you? I showed Daddy expecting him to tell me I was a nut but he sort of just said “Jakey”. I don’t know how to navigate through this. I am believing and having faith in things I never really thought much about or too deeply about. Now I have to.

I am so lost without you. I love you so much. Help us all press on.  Much love little peanut.

Love,

Mommy

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1st Christmas in Heaven

Dear Jakey,

Merry 1st Christmas in Heaven my little peanut. Miss Briana wrote that in your card at the cemetery and it brought me such joy. It is all in finding a new kind of happiness now. Everyone kept saying how hard today was going to be and to be honest, I was like “enough already”. But they were right. Last night was hard. It is just not the same – we did all the same traditions but nothing was really the same at all. You needed to be with me. I needed G-Pa and Ethan fighting over who you would sit next to. And then I needed the ultimate Mommy veto which at any moment would have you on my lap. But I am trying to think of this a new way – that you are celebrating Jesus’ birthday with him during your first Christmas in Heaven and that it is actually a fun and beautiful time for you. It is hard to believe the hype on this one though.

Ethan said that when he wakes up he will see if Santa came (he did) and open one present and then we can all get over to see you first thing (in our matching hoodie-footies like yours).  So, see you soon. I love you so much. Stay close to me today buddy. I need you.

Love,

Mommy

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Balancing and other things

Dear Jakey,

What a day. Overwhelmingly positive yet still so devastatingly sad. What I find positive now is just sort of twisted. Twisted because it is me making sense of life without you. Ethan and I went over this morning and had the best time with you. It is so exciting for both of us to see that people are visiting you and bringing you stuff. Ethan announced that there are so many people who care about you. I think it makes him feel proud too. I am so proud to be your momma.

Anyways, Ethan and I spent a bunch of time with you this morning and it just felt good. I know that you are watching over us and we don’t need to be at the grave to be close to you but I still feel like where your physical body lays is important. Ethan was excited at the prospect of all you could do in Heaven this morning. He was teaching you how to balance on one foot. He told me that he and Kate had talked about you playing bounce catch. Heaven is getting us through this minute by minute. We are all struggling with why you got to Heaven first and so wish we were all there together.

Ethan also wished today that you and him were twins. He thought if you were twins you could both be in Mrs. Somoza’s class and that you would still be here. He wanted you to be next to him in your own booster seat. He was thinking that you must be happy though because so many people have visited you and decorated your tree. He thought you were happy that we miss you so much. I do hope that it makes you feel good all this love we have.

We watched Elf tonight Jakey. I missed you through it all. It doesn’t feel right without you on my lap. I hung on to Ethan extra tight. I still just want you back though. Through it all it always comes back to that. I miss you. I feel lost and empty without you. I am not sure that will ever change though. I don’t see how it can. I don’t see how you can be so intertwined with someone else and then exist without them. But Jakey ,we will be strong. We will make you proud and talk to you all day. We will keep giving cheers to you before meals. We call out to you when we have something to say. And we try to make you feel good in Heaven. We never want you to be sad for leaving but rather happy like Ethan said because of all the love we have. And for the good you did and are doing. I know I am better and stronger because of you. I know I am kinder and more accepting. I know I am a better friend. All because of you. I love you forever.

Love,

Mommy

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Countdown

Dear Jakey,

It just happened again. The smack in the face when I realize that you are gone. My heart tightens up. I feel like I am going to puke. I can’t breathe. It is really just awful. It is not just with these moments that I miss you. I walk around now with something missing. I don’t know how to be out all day doing stuff because I never really had more than 3 hours apart from you. And if I was away from you for more than 3 hours you were with Kate and I could harass her and know everything that was going on. It is hard trying to be me without you.

But again, I am trying so hard to be positive. And in the midst of this bullshit, there is a lot of positive. I feel pretty damn good about humanity which I am not sure I really did before. The kindness of those around us and the company of great friends has been the light in this miserable dark and cold tunnel. And Jakey, I have taken so many people to you these last three days. Cynthia, Kristin, Kelly, Briana, Emily, and Jen have all come with me to see you. And Vera and Bridget brought you an ornament and flowers. Miss Trish bought you a special ornament and will be by soon too.  Ethan has upped his visits to twice daily. Daddy does his secret prayers with you.  Abue and G-pa visit. And I am your biggest stalker. And the best part is that I noticed things on your tree – a ribbon and a candy cane. And things under your tree too – a scooby doo van. It means that people are visiting you without me. And that is awesome.

I still worry about you my little man. Not about your seizures or your sleep or your poop anymore. I worry that people will forget. Forget your strength, your lessons, your resilience, your beauty, your will, your spirit. All that is you. I promise I won’t let that happen. You were and are the most amazing boy. I miss you so much I cry and I hurt. But I have faith. Faith in you and me. Faith that our time is greater than what we have had on Earth and I count the days until I see you again.

With so much love,

Mommy

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Strength

Dear Jakey,

Good Morning my peanut. I miss you terribly. I felt pretty strong yesterday and then lost it last night in bed. It is so overwhelming sometimes trying to keep it together. It can be exhausting being out in the world and attempting to function and socialize.

Ethan and I talked a lot about Heaven last night. I guess you know that. Help it make sense to him. He loves that you are there without seizures. But he misses you. His prayers included “pray for Jakey in Heaven, right next to you.” How beautiful. He then kept repeating your name over and over, which I get. It is like trying to believe it and trying to make sure God is taking extra care of you all at once. Hunter’s mom sent me some books, Jakey. One is all about Heaven. I told Ethan I was reading it and as I learned more about it I would tell him what I learned. We both are comforted in trying to know more about where you are. I wonder if you found Hunter yet. I think that you two would really get along.

Jakey, I miss you so much. I can’t say it enough. I can’t even explain how much it takes for me to keep it together. To listen to everything everybody has to say. To put up with everyone else’s grief. But I am doing my best. I am staying strong because you did. And I am hanging on to the belief that there is a bigger plan and that one day we will all be together again. It seems so abstract but I do believe my peanut. I know you are there. I know you are happy. And I know that I love you so very much and will hug you again. Thanks for you strength and your visits. I wasn’t sure about last night but I know the night before you came. You give me strength.

Love,

Mommy

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