Dear Jakey,
I may not read you this letter, or I may have to wait until your older. I would never want you to misunderstand it because if it ever made you feel as though I would love you more if things were different that would crush me. I couldn't ever love you more.
When you were 11 months old, we were in Chilren's Hopital Boston. We had been there for about 3 months or so at that point. No one really had any idea what was going on, you didn't really respond to any medication and depending on who read the EEG you were having up to 100 seizures a day. Those days were hard but you were pretty incredible throughout it all. Mommy and Ethan slept at the Holiday Inn in Brookline and Daddy slept at the hospital with you. I was so proud of your Daddy because he never left the hospital - he wouldn't - not without you. Anyways, every morning Mommy dropped off Ethan at Ya-ya's house and came over to spend the day with you. Later on in the day Daddy picked up Ethan and brought him over to the hospital. I can remember vividly how you would react to him in those days. You loved him so and you would follow his every movement and would smile at him. He would often get right into bed with you and lie with you, knowing at 2 years old how careful he had to be with all the wires attached to you back then. Anyways, at some point we made the decision to try something pretty intense to make the seizures stop. It was something I had vehemently opposed doing for the couple months before but I changed my mind and for that I am sorry. I should have stuck to my guns because after that pentobarb coma you haven't really smiled again and you haven't really followed with your eyes again. Something happened when they did that to you and I am sorry. I can't blame anyone else but me and I just wish I said no. Dr. Liebson and Dr. Bourgeois made it sound like we had nothing left to lose, I know now that we did. So I am sorry. It is the only thing in my whole life that I wish I could change. Not because I would love you more because I couldn't possibly but because I miss your smile.
Love,
Mommy
Thursday, September 30, 2010
Rainy morning
Dear Jakey,
It is raining this morning and I so wanted to keep you and Ethan home with me and have one of our snuggly "home days". Now that you are both off to school we don't get those anymore and on days like today I really miss them. But school is good - you get to play with Beth and today you have PT and OT. I hope you don't sleep through it all.
I read last night the part in the book where Hunter died. It sucked and I couldn't stop crying. I honestly don't know what would happen if we lost you. We would all crumble. You, the youngest in our clan, are the strongest. You are really the glue that keeps us together sometimes. A lot of pressure on you I know. I got up early this morning to exercise and when I left Daddy was holding your hand as you both slept and Ethan was curled up at the foot of the bed. Even in our sleep we all need you close to us. When I got back, Daddy was up but Ethan had moved right up next to you and was hugging you tight. You are lucky to have him even though I know it must be hard sometimes not being able to wiggle out from his big hugs. He is your best friend and avid protector. Sometimes I forget he is only 5 because he has such a big role to fill. He tells us if you had a seizure we missed, helps you when you can't quite get your head back up and helps you swallow when too much spit backs up. Last night he helped with that last one a lot. He also knows how much you look up to him and love him because when I tell him that I love him, he always says "not as much as Jakey does." That is what is awesome about you - you don't need to use your words to tell us you love us, you just let us know and we all feel pretty damn good about that.
More to come my little man.
Love,
Mommy
It is raining this morning and I so wanted to keep you and Ethan home with me and have one of our snuggly "home days". Now that you are both off to school we don't get those anymore and on days like today I really miss them. But school is good - you get to play with Beth and today you have PT and OT. I hope you don't sleep through it all.
I read last night the part in the book where Hunter died. It sucked and I couldn't stop crying. I honestly don't know what would happen if we lost you. We would all crumble. You, the youngest in our clan, are the strongest. You are really the glue that keeps us together sometimes. A lot of pressure on you I know. I got up early this morning to exercise and when I left Daddy was holding your hand as you both slept and Ethan was curled up at the foot of the bed. Even in our sleep we all need you close to us. When I got back, Daddy was up but Ethan had moved right up next to you and was hugging you tight. You are lucky to have him even though I know it must be hard sometimes not being able to wiggle out from his big hugs. He is your best friend and avid protector. Sometimes I forget he is only 5 because he has such a big role to fill. He tells us if you had a seizure we missed, helps you when you can't quite get your head back up and helps you swallow when too much spit backs up. Last night he helped with that last one a lot. He also knows how much you look up to him and love him because when I tell him that I love him, he always says "not as much as Jakey does." That is what is awesome about you - you don't need to use your words to tell us you love us, you just let us know and we all feel pretty damn good about that.
More to come my little man.
Love,
Mommy
Wednesday, September 29, 2010
Importance
Dear Jakey,
You know how sometimes people look at us like they feel sorry for us? I wonder how this makes you feel. I know it generally pisses me off. But I tend to think you have more grace and patience than me so you probably handle it better. It takes me a while to remember what I know to be true and that is - that most people are good and kind. Most just don't know how to react to a 4 year old that isn't running around and playing and all that stuff your brother does. Most people mean well but don't know what to say. And that is fine. I don't know what to say. Other than, I love you and as much as I wish things were different for you so that you could run and play soccer and learn how to do monkey bars and ride a bike and fly a kite and all those good things - I have accepted where we are and I know you have too.
When you were first in the hospital - at Baystate, before we even made it to Children's and we were sitting in the ER having no idea what was going on - Daddy said to me that this was a sign that we needed to slow down. I think of that often because it so many ways it was true. Before you got sick, life was a lot different and you were probably too young to remember. We did lots of things your first 8 months. When you were only two months old we moved from Boston to Saratoga Springs. When you were 5 months we went to Toronto to watch G-Pa give his big speech in front of thousands of people. You were such a good baby. When you were six months old we went to Buenos Aires to surprise G-Pa for his birthday and you were quite fond of the latin ladies. You didn't fuss at all and flirted with everyone. Life was good. The thing is, it still is. It is just a different kind of good. We may not take you to see all kinds of new places but we do get to do a lot. We hope that you enjoy what we do and that you feel included. Sometimes I feel like I neglect you and that makes me sad. But I try. I think you know that.
Anyways, we have slowed down. And it is for the better. We really understand what is important and it is not in the trips or in anything else - it is in our family of four and the people we share you with. It is in Ethan who told me the other night that you were his very, very, very best friend (although Willie is his best friend out of those that can walk!). It is in Lilah who without prompting started singing to you one day. It is in Logan who greets you at school by announcing that "Jake's here!!". It is in all the moments that we know people care and it is in us making the most of everything we have. And in remembering to appreciate each moment.
I love you my little peanut. Time to go snuggle.
Mommy
You know how sometimes people look at us like they feel sorry for us? I wonder how this makes you feel. I know it generally pisses me off. But I tend to think you have more grace and patience than me so you probably handle it better. It takes me a while to remember what I know to be true and that is - that most people are good and kind. Most just don't know how to react to a 4 year old that isn't running around and playing and all that stuff your brother does. Most people mean well but don't know what to say. And that is fine. I don't know what to say. Other than, I love you and as much as I wish things were different for you so that you could run and play soccer and learn how to do monkey bars and ride a bike and fly a kite and all those good things - I have accepted where we are and I know you have too.
When you were first in the hospital - at Baystate, before we even made it to Children's and we were sitting in the ER having no idea what was going on - Daddy said to me that this was a sign that we needed to slow down. I think of that often because it so many ways it was true. Before you got sick, life was a lot different and you were probably too young to remember. We did lots of things your first 8 months. When you were only two months old we moved from Boston to Saratoga Springs. When you were 5 months we went to Toronto to watch G-Pa give his big speech in front of thousands of people. You were such a good baby. When you were six months old we went to Buenos Aires to surprise G-Pa for his birthday and you were quite fond of the latin ladies. You didn't fuss at all and flirted with everyone. Life was good. The thing is, it still is. It is just a different kind of good. We may not take you to see all kinds of new places but we do get to do a lot. We hope that you enjoy what we do and that you feel included. Sometimes I feel like I neglect you and that makes me sad. But I try. I think you know that.
Anyways, we have slowed down. And it is for the better. We really understand what is important and it is not in the trips or in anything else - it is in our family of four and the people we share you with. It is in Ethan who told me the other night that you were his very, very, very best friend (although Willie is his best friend out of those that can walk!). It is in Lilah who without prompting started singing to you one day. It is in Logan who greets you at school by announcing that "Jake's here!!". It is in all the moments that we know people care and it is in us making the most of everything we have. And in remembering to appreciate each moment.
I love you my little peanut. Time to go snuggle.
Mommy
No more excuses
Dear Jake,
I love you. I hate that you have to work so hard to stay alive and to participate in life. I started reading another mommy's book last night about a little boy who had a leukodystrophy - the same group of diseases we tested you for last week. His name was Hunter and when mommy and daddy saw his mommy and daddy we knew there was something similar. He had a big wheelchair like you, and couldn't move too much or hold his head up either. He also didn't smile or talk. BUT his parents knew he was strong and a fighter and knew what he needed. They understood him and loved him. It was nice to finally find someone who really believes what we know to be true - that just because you look like you might be out of it or sleepy, you are not. You are doing your absolute best to stay alive, fight the fight and be happy. We know it, they knew it about Hunter and I want to make sure you know that we know!
Hunter's mom used to write a lot about what was happening with her family. I always said I would but all these years have passed and I haven't. She also wrote letters to Hunter and as we were driving home from school today it occured to me that I should be doing the same thing. So here, it goes, no more excuses - letters of all sorts will follow. Letters about the past, letters about the future, letters about your family, letters about Ethan, all kinds of thing. And as we collect them, I will read them to you so that you know how important you are and you can remember all the things we have done together. I love you little buddy.
Love,
Mommy
I love you. I hate that you have to work so hard to stay alive and to participate in life. I started reading another mommy's book last night about a little boy who had a leukodystrophy - the same group of diseases we tested you for last week. His name was Hunter and when mommy and daddy saw his mommy and daddy we knew there was something similar. He had a big wheelchair like you, and couldn't move too much or hold his head up either. He also didn't smile or talk. BUT his parents knew he was strong and a fighter and knew what he needed. They understood him and loved him. It was nice to finally find someone who really believes what we know to be true - that just because you look like you might be out of it or sleepy, you are not. You are doing your absolute best to stay alive, fight the fight and be happy. We know it, they knew it about Hunter and I want to make sure you know that we know!
Hunter's mom used to write a lot about what was happening with her family. I always said I would but all these years have passed and I haven't. She also wrote letters to Hunter and as we were driving home from school today it occured to me that I should be doing the same thing. So here, it goes, no more excuses - letters of all sorts will follow. Letters about the past, letters about the future, letters about your family, letters about Ethan, all kinds of thing. And as we collect them, I will read them to you so that you know how important you are and you can remember all the things we have done together. I love you little buddy.
Love,
Mommy
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