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Archive for May, 2011

Great

Dear Jakey,

Yesterday afternoon, Ethan announced “what a great day”. And he was right, but when he said that Jakey, it just about did me in. And of course I started to cry. I kept it from Ethan because I didn’t want to make him sad or think he said anything wrong because he didn’t. It just was such a hard day for me yesterday. Great, but hard. It was another one of those days that really symbolized all that is different. We woke up yesterday and did some stuff, then went to Sunnyside Gardens and bought plants for my veggie garden and for the pots on the deck. And as usual, I bought too much. And we went to the Farmer’s market to get stuff to grill. And then we worked all afternoon in the yard. Ethan went back and forth between helping me and Daddy and took lots of break in between. He played on his play set and threw a ball around. I can’t remember the last time (because I don’t think there was one) when we had a day like that. When I first started gardening at our old house, I really loved it. I loved it because our old house made it easy. You could access our deck my two different doors – it was easy to bring you out or position you on the inside still near me and Ethan playing in his sandbox. Everything was close by. Gardening became stressful for me once we moved. Our new back deck was not easily accessible with your chairs and was always in direct sunshine. And my veggie garden was down below so I always had to do things rushed. Which isn’t fun. I didn’t rush this year. And I hope that gardening is something I can enjoy again. But the whole thing just makes me sad or sort of a little muted. I keep going back to that horrible feeling of heartbreak. And while it isn’t as sharp, it is always there and keeps the fun stuff from being quite as fun because it all came at such a cost.

Yesterday morning, on the way to Sunnyside, I was checking the weather forecast on my phone. It was not promising. It showed on the hourly schedule that it would start raining at 10 and continue through 1 when thunderstorms would begin. Ethan than asked you to make it stop raining until we were done. I thought of that when we finished all that we wanted to do for the day. And I think it goes to show how we all still depend on you. Not necessarily to work your magic with God so that things work out in our best interest but that you are still an integral part of our life.

It is so redundant to say but I still have a hard time really accepting that you are gone. And how quick it went. And how we are all plugging along here on Earth. Rolland is painting our house now. Remember him? He is the guy who helped us at the funeral. We will always be so grateful to him for what he did for us in those days following your death. He got that damn spica off of you and dressed you in your favorite brown fleece pants and that awesome turtleneck and sweater. He took those horrible pictures of you laying dead in the hospital and replaced them with the Jakey that we want to remember. Anyways, he is now here at the house most days working on our house. And I like that. He is doing a great job but is another person that knows about what happened to our family. He mentioned to me the other day how happy Ethan seems and that he notices how much time I can spend with him now. He sees me take him to visit you and then to school each morning and sees me pick him up and then do our thing – whether it is a walk in town, a bike ride, or off to tae kwon do or t-ball. He recognized that it wasn’t really like that before. And I am happy that Daddy and I are able to do things we never could before as a family. But it doesn’t stop breaking my heart every single time. And it doesn’t really hurt less. It just isn’t fair that a mother has to choose between her kids. And it is not a typical choice because in reality the choice was made for me. I don’t want you ever to think I prefer it this way. As much as I am enjoying some of the things that we are doing now, I would turn it all away for even just one more hour with you. Even today, we are getting on the train in a little bit to head down to meet Fiona and Gracie. I can’t wait. Ethan is excited to go and see Ollie. I can’t wait to see Kir. And we’ll be back home by 8:00 tonight. No big deal for anyone. But another thing that is different. And another thing I am looking forward to but really wish it just wasn’t an option. I’d give anything to be back at last Memorial Day Weekend – spica cast and double pneumonia and all. Because then our family was complete – we weren’t missing anyone.

I have more to say but it will have to be later. It has been harder lately for me to get these letters out to you. Not sure why. Hopefully it will pass and I will get caught up. I have so much to say to you buddy.

With so much love,

Mommy

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fog

Dear Jakey,

I am really not sure where this letter is going. Usually, I have a good idea of exactly I want to tell you. But the last few days I have been struggling a bit with my thoughts. Everything feels a little disconnected lately – sort of like I am on the outside looking in. It is weird. Yesterday I was in your bathroom with Ethan and I was looking at the two pictures we have hanging in there. They are the big close-ups of you and Ethan after your very first baths. You both look so identical that if it wasn’t for the different towels I couldn’t tell you apart. But I looked at it and I tried so very hard to remember that day. And I couldn’t  – I mean I remembered it in a sort of distant way, but in reality it was just looking at a picture. I didn’t remember it like I was there. And then today I was walking up the stairs and there was that picture of you and me at the park in Buenos Aires. I remember it being such a happy day, maybe my happiest ever but it still seems so distant and almost like it wasn’t part of my life. Or not a part of this life. And then that makes me sad. How can you – the most important part of my life feel so separate? I don’t like it. But it is like I am grasping at straws sometimes because I know things will never be what they once were. And I can’t go back no matter how hard I try.

Paulie’s mom asked me today if I felt sad when I was around younger kids. We were at tae kwon do and she always brings Alexandra to class. I told her no – that I was used to it and really okay with it. Which is true – I got so used to our life as it was and really loved you for you – so it didn’t bother me that other kids were healthier and doing different things – at least not mostly. But I told her something that I have found to be true over the last 5 1/2 months. I don’t get sad for younger siblings, I get sad when I see older kids – teenagers or adults in wheelchairs with some of the same problems you had. And I feel bad – like I stare, but stare because I am so sad that it isn’t us anymore. It is really the thing that does me in – I was getting so mentally prepared to take care of you for my whole life and keep you in our home and safe and happy. I had talked about getting an elevator put in and making the adjustments we would need to make. In the airport earlier this week I saw a boy – probably in his late teens – in a wheelchair. Not just a wheelchair but one like yours. That is the part that breaks my heart because we never got to get there together. I was getting so ready buddy. I wasn’t feeling so scared about it. And know it doesn’t matter.

This one isn’t coming out easy Jakey. I am just so lost without you. I keep thinking of life with you and how it is now. It is just different. Today after school Ethan and walked to G. Williker’s to get a birthday present for Ollie and little things for Fiona and Gracie. We just walked over and back and it was easy. No big deal. But tit was something we couldn’t do before. So it just feels weird to be so easy now. Today, Daddy was golfing and was home a little later than we thought. And I couldn’t help but think about how that would have been harder and I would have been more stressed out because it would have been tae kwon do, feeding you, meds and dinner. But this time it wasn’t a big deal. And that too feels wrong. It shouldn’t be this easy.

I miss you. I want you back. I want to be a family of four again. It just felt better.

Love,

Mommy

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Dear Jakey,

Top Ten Things I Missed About You Today:

1. The way you used to look right when you fell asleep with your head on my arm. Just beautiful. And perfect. I close my eyes tight to try to picture it but it is not the same.

2. Making your meals. Bet that surprises you since I used to bitch about it sometimes. But I miss it. I was shopping today and I avoided the avocados. And I felt weird buying eggs. They are just too wrapped up in you.

3. Watching TV with you. Now I know it was usually my crappy TV but you used to fall asleep and I couldn’t resist snuggling with you and holding you until you woke up.

4. Dressing you. And making you look perfectly adorable.

5. Walking to pick up Ethan. You only came with me a few times a week but I liked it. I miss the red stroller, I miss pushing it and I miss you being with me

6. Your smell – sometimes after the bath. But sometimes you had keto breath and that was your own smell too – and I miss that.

7. When your hair got really really curly after a bath.

8. Logan and Zander  and your whole crew at Prospect. I loved dropping you off and having them get so excited to see “Jay-Jay”

9. I miss you in the car. I miss that I always had someone to talk with or sing to.

10. Basically, every single thing about you. I just miss you and our life. Our days and our routines. I miss it all. I hope you know how much I think about you. And I hope you know I really can’t wait to see you again.

Love,

Mommy

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a year

Dear Jakey,

It is weird what a year can bring. This year we are in Aruba with friends. Last year we were recovering from your massive hip surgery. It was a constant thought for me on May 18th and I remembered it in two very distinct ways. One – that a year ago you had your surgery and two – that last year was Oliver’s 1st birthday. I remember thinking last year so vividly that was a good luck sign. I remember thinking that it had to be lucky because it also marked Oliver’s first year of life. And in a way it was. You did so well through your surgery and we went home the next day. Your spica was orange and you were amazing. And next weekend will mark the weekend in which you got pneumonia and we had to fight with Dr. Noonan about how to handle it. We kept you out of the hospital, even when I think G-Pa thought it was a bad idea. I (and Daddy and Ethan) stayed up all night giving you saline nebs and keeping the oxygen on to help you breathe. It was all so scary then but I didn’t have the foggiest idea what the next year would bring and what scary really was. And that I would be here so desperately sad thinking about those days – and that even being in Aruba doesn’t help. I wonder if next year will seem less painful. I just want to be back in that place we were last year. When I was on the phone with Dr. Grottkau’s office and with their home and cell phone numbers – monitoring it all. I had such purpose then and I kept you safe. I miss that. I miss you. And it doesn’t matter where I am because I would just rather be with you.

Love,

Mommy

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change

Dear Jakey,

Daddy and I went to the chapel this morning. And I miss you so much. Last night it hit me again that you were gone and that life was just different forever. I don’t understand what makes it happen so suddenly sometimes. I guess it is just the way life is now. I so wish that I could change it and that we could go back to the way it was before you died. There are so many pictures on the camera that I need to erase because they are on the ipad and computer and they are all of the “before” of our life. There are some videos from years ago, well before we knew how our story would turn out. And so many pictures of you leading up to the day until you were gone – when even in those days and hours before it happened we didn’t really know it would happen. And even when it was always a fear in our heads and hearts, we didn’t see it coming.

So Jakey, it is just more of the same. I miss you. I really don’t like being anywhere without you.

Love,

Mommy

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vacation

Dear Jakey,

I love you buddy. I am writing from Aruba. Our trip has been really fun so far. And the time away with friends is a good thing. It is funny though because I was wondering if I would feel you down here with us or if there would be any of my weird interpretations of you. When we first got to the house, we saw a bunch of pretty spectacular birds and I thought about it being you but it didn’t really seem like it. And I have spent time each day talking to you and keeping you close to my heart., but I think the answer is that you are not here with me on this trip. I can’t speak for Daddy but for me, I don’t really feel you here. And I am okay with it. Like always, I get a little anxious at the thought of you gone and so far away and it still seems pretty much unreal. But maybe you are with your brother more this week. I hope so because I miss our talks with you and our visits to your grave. Sometimes those more than anything keep me feeling close to you. Anyways, buddy, I will be by to see you  Sunday and I fully expect some connection with you soon but if you choose to wait until we are back in Saratoga I will be okay. Love you more than life.

Love,

Mommy

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change

Dear Jakey,

Last night we stayed in Lake George. When we got there and I went into the room, I had a total deja vu type thing. In that instant I was looking for you and I would have sworn I saw you – sitting in your red stroller, waiting for me to take you to cuddle. I know we have stayed there since you left us but it just struck me last night. I hope you know how much I love and miss you.

We dropped Ethan off with Abue & G-Pa a little while ago. We leave for Aruba early tomorrow. I am excited but also a little freaked out. It is just so weird. And when I feel too excited I also feel sad. Sad because of why we are able to go. I had really come to terms with not traveling much. And know we can, and we are and part of it feels bad. It doesn’t feel right to look forward to something that I can only do because you died. I know that isn’t how I should be thinking about it, and I know things will be fine. But part of me does think of it that way. And I don’t like it.

So, Jakey, know how much I love you. How much I miss you. How broken-hearted I am. And come with us to Aruba and see what its like.

With so much love,

Mommy

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