Mystery

Dear Jakey,

I don’t know how you do it. There remains so much about you that is a total mystery. Just when I think we understand each other I find myself completely at a loss over what is going on and what you need. You appear to be comfortable and adjusting as well as can be expected to your spica. Yet something is up because you are not sleeping. I know it seems like you just can’t make me happy – I complain if you sleep too much, I complain if you don’t sleep enough. But last night was odd, even for you. You just didn’t sleep. At all. Wide eyed all night. Now usually when that happens it is a particularly bad seizure night – but that doesn’t seem to be the case. You didn’t even sleep all day yesterday which would be the other reason I would expect you up all night. And even now you remain awake. There is so much about you that I just don’t know or understand and it makes me worried. Not that I think there is anything particularly wrong going on now, but just because there is really no way to be sure.

Love,

Mommy

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One down, three to go

Dear Jakey,

We are almost one week down. Three more to go. You are adjusting pretty well and seem to be used to it. Oddly enough, you actually seem to do better in some ways with the spica on. I remember that from May. We are seeing so much more movement – I can’t stand how cute it is when you wake up from your naps and stretch out both arms over your head. It is so nice to see you move. And your toes. You move them and move them when you are in the cast. It is almost like with your whole body stabilized you are strong enough to wiggle and move. And the seizures – where do they go when you are in a body cast? They for the most part disappear. I don’t get it but I will take it.

Anyways, tomorrow is three more weeks. Lots will happen in those three weeks – we will get ready for Santa’s big visit, spend four days in Boston with Dr. Thiele, Heidi, Dr. Browning, Dr. Eichler and some new folks. We will get a little more free time since your school day will be short and maybe non-existent on some days, and no therapy until the cast is off. And hopefully, you will stay comfortable. Mommy and Daddy will do anything to keep you comfy – including continuing to sleep on the couch with you until the cast is off. Ethan hasn’t figured out that we are doing that yet but I am sure once he does, he will be down here too. Stay strong peanut!

Love,

Mommy

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More choices

Dear Jakey,

Today was a great day and we picked out an awesome tree at Bob’s this year. The only thing missing was you. It made me sad to keep you home but I realized that while sometimes it is the absolute right thing to bring you with us but other times it is just selfish of us. Sometimes we want you there so much but it is just to difficult on you. I thought about it a lot yesterday when you were crying the whole way to Prime. I know you are still so sore with your fracture and I know there is no way that your spica is comfortable. It made me really think though that some times it is worth you being a little uncomfortable and other times it isn’t. Having you with us for Thanksgiving dinner was worth it, but I think the trade-off was today. It was sad that you stayed home and made me feel guilty when I was having fun without you. But you got to snooze and play with Cait. And Ethan and Sarena got to run around. And Daddy and I carried the tree for what seemed like half a mile. And while it was sunny and beautiful, it was also really chilly. Between your cast and the weather I am pretty sure it would have been a miserable experience for you. So I try to be happy to have protected you from it. I am also happy you get to be a part of tomorrow with all the decorating.

So I guess it is just going to have to be day by day, event by event to figure out what is worth it. And us making sure that it is about you and not us. I miss you so much when you aren’t with us but know that I love you all the time and I look forward to a day when we don’t have to make these choices at all and you can just be with us all the time.

Love,

Mommy

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Super Silly Fun

Dear Jakey,

Daddy and Ethan are off to pick up Sarena. You are sleeping and as I wait for you to wake up I am watching “I Love You, Man”. It is a stupid movie but I like it. There are two guys in it who are friends and are doing all sorts of goofy, fun friend things. It got me thinking about a bunch of goofy things I have done with my friends from innocent silly stuff to crazier more adult type things. I have been thinking today about some of those silly times because one of Mommy’s oldest friends turns 37 today. It means Mommy is getting old and as I remember memories from over 20 years ago I think about how important friendship is. To this day there are people who stand by us and support us and people who we get together with and act ridiculous. It shows how important friends are and how fun they can be. Anyways, it got me thinking about you again. And if you will ever be able to experience some of the crazy fun that I’ve experienced. I hope so. One of my biggest hopes for you is that you can have some super silly fun and laugh until you cry over something absurd. I am grateful to all my dear friends who have given me a lifetime of laughs and hope that you get a chance too. Either way, you will always be my best little buddy ever.

Love,

Mommy

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Love Story

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

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broken

Dear Jakey,

My heart is broken. Completely and utterly broken. I cannot believe all that you have to endure. I wrote to you yesterday about how positive things are going and now today, we have a broken femur. Or rather you have a broken femur. I only wish it was my broken femur. I just don’t understand how these things happen. But we knew something was up. We knew it on the way to NY when you started getting a little flinchy. And when all your therapists commented on your right side. And when we talked to Boston. And finally last night, when I moved your position like I do throughout everysingle night so you don’t get sore and heard a crack and you cried. And cried and cried. And then I knew something was very wrong. It is always like being trapped on a one way train ride. You know where it is going and you don’t want to go but you can’t get off no matter what you do. No matter what x-rays you have done, tests or precautions you take, whatever is going to happen will happen and there is not a damn thing we can do about it. I am so sorry Jakey, I wish I could stop these things from happening.

So, Daddy says you are continuing to be resilient and amazing. He is with you now at Albany Med and it looks like they will cast you there. Probably another spica. And then to be safe we will go to Boston – maybe tomorrow so that we can be there early Monday when Dr. Grottkau is there. Hopefully we will here from him soon.

I am so sorry my buddy. I would take a million breaks to my body over anything more to happen to you. I can’t wait until you are back home. Your brother is seeing things on the bright side – saying at least we now know what was hurting you and we can get it fixed. He is right. I love you more than you can imagine and wish I could make your bones stronger. It doesn’t seem fair that they break while you lay there trying to sleep. I hope someone soon finds a way to make this stuff a whole lot easier for you buddy. I will keep looking for answers but until then know that I love you so very much and can’t wait to get my arms around you – cast and all.

Love,

Mommy

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participation

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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Dear Jakey,

I miss you this morning. I felt funny when I was driving back down from Prospect without you. Sometimes I just miss you extra. Today is one of those days where I just want to keep you with me and work on getting you fattened up and strong. We need to stand and we need to eat. There are so many other things that keep us from doing the two most important things. I have been nervous to have Daddy weigh you because I am sure the number will be way too low. Hopefully we will turn the corner soon. And that means no more funny business – no more puking. I can only take so much my little peanut boy. I can’t wait to see you in an hour when G-Pa brings you back home. A fresh batch of egg avocado will be waiting for you.

Love,

Mommy

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favorite things

Dear Jakey,

I have been meaning to tell you about the conversation I had with Ethan the other day. We were walking to school and I told him that our walk to school was one of my favorite parts of the day. He asked why and I explained that it was a set amount of time where him and I got to spend some alone time together and talk while we walked. He seemed to like my answer and then went on to tell me his three favorite things about his day. First was recess. Second was playing football after school. Third was coming home and knowing you were there waiting and seeing you after the whole day. Your brother loves his school so much and loves being a walker so he can socialize before and after school with his buddies. I love that he is a walker too, for the little windows of time I get with just him and for my chance to socialize with some mommies. His answers didn’t surprise me but I felt so proud of him for recognizing the balance and for looking forward to sharing his day with you. I suspect that when he comes home it is one of your favorite parts of your day.

I particularly enjoyed yesterday when Ace walked home with us after school and Ethan quickly and kindly explained to Ace that you couldn’t walk or talk but included you in their game. It reminded me of boy time with Daddy and Ethan – you respond in a different way than when it is just you and me. I was so proud of both you yesterday – proud that Ethan included you with his friend and proud that you participated and let me help you catch. My boys playing together will always be one of my favorite things.

Love,

Mommy

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contradictions

Dear Jakey,

I had a meeting today with other moms from Ethan’s school to discuss the yearbook. It was a fine meeting with some really nice women. But I left with a weird feeling – kind of like a pit in my stomach. This seemingly innocent yearbook meeting left me with a somewhat definitive feeling that sending you to the program at Division Street would be a mistake for next year. It made me sad because I had secretly held on to the idea that while both my boys might never be able to be at the same school, maybe they could both be in Saratoga Springs Public Schools.  Now ,don’t get me wrong, nobody was explicitly mean or if they met you, would be anything but kind or sympathetic. But it was the more implicit comments that could almost go unnoticed. Unnoticed unless you have a kid that makes people look twice. Now, Jake, I tend to believe that people look twice because you have been blessed with incredible good looks. What I wouldn’t give to trade your good looks for good health – but that is another story.

Anyways, having never seen a previous year’s yearbook, I thought it looked great when I flipped through. There was clearly effort made to include all kids with tons and tons of candid shots. Or so I thought. I got to a page for Mrs. Cook’s class and I saw five students. They all looked great in their classroom photos but I didn’t notice a lot  (if any)of  the candid photos in the area below  – as was the format for every other class. And the reason this stands out to me is that Mrs. Cook is the special ed teacher. Now I clearly could have missed some pictures but I don’t think I did. And I think it is because the kids not in the typical classrooms are  not entirely made to be a part of the school.

When we first discussed Division Street as a possible option for you, Daddy expressed worry that it would provide opportunity for people to be mean and make fun of you. Oddly my answer was disturbing in itself. I said how having grown up around here, I never even saw the special ed kids so there would be little to no opportunity for them to be made fun of. It wasn’t until I said that out loud that I realized that in and of itself was a problem. We live in a society that doesn’t want to acknowledge that which they don’t understand or that might make them uncomfortable. It is better to ignore. And as your proud mama, I don’t want you swept under the rug and ignored. I want you to be embraced and challenged and loved and I now think that Prospect will do that for you – even if it means a longer car ride.

I tell you this Jake, not to make you sad, but to make you confident that we will do our best to always protect you. And that while I think you teach people so much, I will never use you as a vehicle to make people better – they need to figure that out for themselves and think about their words and actions a little bit more.

Love,

Mommy

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