White Matter

Dear Jakey,

Dr. Browning called yesterday and left us two messages - one at home and one on my cell. Both messages started the same way "I've got great news!!". Well, her great news is that Dr. Florian Eichler has agreed and is excited to take you on as a patient. Just goes to show how great news is a relative term. Yes, it is great and I am thrilled that the country's expert in white matter and leukodystrophies is willing to help us figure things out. However, I would have preferred him to say that after looking at all but one of your MRI's he did not find you all that interesting and that you in fact most definitely do not having white matter issues and definitely do not have some insanely rare leukodystrophy. That would really have been the great news.

But that was not the case, so we have yet another new doctor visit with another new set of eyes to examine you. They wanted us to come out on November 10th but sometimes Mommy has to draw the line. We are going next week for the VEP and I explained that we would prefer to do it on either November 3rd or December 15th since he only sees patients on Wednsdays. I just can't see going back and forth and have learned that a month will likely not change much yet the constant disruption in your life does. So unless I hear otherwise - you will meet Dr. Eichler in December and  we will spend a solid 4 days with everything from your brain to your hips being examined by the best. And in between November 3rd and December 13th, I promise you lots of normal, family fun without doctor's using you as their research project.

Love,
Mommy

Good Times

Dear Jakey,

Mommy is working on a project which is requiring her to spend time looking through old pictures. I have just gone back from today all the way back to your birth. Wow - what a life you have led and are continuing to lead. Part of me wanted to be sad when I saw the pictures at the hospital when you were born and your crazy 15 month old brother kissing you up. And the pictures of you in your first house in Dorchester, and your first Halloween as a shark, and you playing with Ava and Ethan, and your trip to Toronto and to Argentina, and you loving up Alcira. And then all those pictures of you in and out of comas, with all sorts of tubes and all sorts of doctors and therapists. And then so many more pictures - you as a spider, as a monkey and then as a police officer. You and your brother snuggling in all kinds of crazy jammies. Pictures of you working so hard to get strong  - with Karen, Xavier, Linda and Cynthia. Countless pictures of you being loved by everyone - me, Daddy, Abue, G-pa, Auntie Yvette. There are just thousands and thousands of pictures of our life together. And I refuse to be sad because while life didn't turn out the way we planned, it is still pretty damn great. And life with you is wonderful - never boring, sometimes scary and always wonderful. I love each moment that we have spent together as mommy and son. I look forward to many many more. You are the best four year old I know.

Love,
Mommy

New Friends

Dear Jakey,

It is not only Ethan that is making the transition to Lake Ave and his new kindergarten life. We all have to adapt. He has made the transistion with such ease that I can't help be proud and impressed by him. Today was a big step for us - well, more for me because I am not sure that you are as awkward as me. When I take you to pick up Ethan we have had a few of the typical  - "he is so sleepy" , "i wish my kids napped like that" comments but not too much and easy to deal with. Today was our first birthday party and I feel bad because I did try to make it so you couldn't come - I am sorry buddy, I know I talk about including you more but sometimes I want to take the easy way out. Anyways, Kate and Cait were busy so we went to Paulie's birthday which was all new families to us. While I had a met a few people before or spoke with them on the phone it was the first time we would really engage in the "mom chitchat". We met a bunch of nice people and I really can see becoming friendly with Paulie's mom but I never know what to say about you or when to bring up that you are sick. She asked how old you were and was excited when I said 4 because her daughter (who was running around having a blast) is 3. She saw potential playmates while I knew that wouldn't be the case. We got the usual sleepy comments and I know people were wondering what was up. It just seems random though to bring up because it isn't really obvious right away. What should I do Jakey? If you were me, what would you do? It would be so much easier if you could tell me!!!

I don't want to hurt your feelings and I don't want to ignore you. Over time we will get through this transition too. I just hadn't thought about how we would me making new friends too. We are so lucky to have good friends that have known you even before the seizures - Uncle Steve, Aunty Spunkie, Christy and Rob, Briana and Trish. And then so many who have gotten to know you since you were so much younger - Kelly, Sharon, Kirsten and Mike, Carolyn and Bridget . We are lucky to be surrounded by good people. I know we will be bringing more into our world - I just hope they realize how lucky they are to be included in yours!

Love,
Mommy

Poop

Dear Jakey,

This is probably too much information for many but I can not believe how much I have to think, analyze and share information about your poop. Cait and Kate have come to expect it. I end up bringing it up to "normal" people and they must think I am a real wack job. But really - so much has to do with whether you poop or not. I was just now watching you sleep and you had a pretty big seizure (by your standards anyways) and it reminded me that you haven't pooped since Saturday. I am pretty dissappointed because I thought we had it back under control since you went three times on your own last week. But now we are backed up again. We are also running out of options  - we got the new keto liquid complete with extra fiber - I make all your meals daily with coconut oil (which is a reall pain in the you know what, no offense). I am scared to keep using mineral oil because of the whole issue with people and neuromuscular disorders AND we have to be careful with miralax because of that weird breathing thing that happens to you on it. Dr. Thiele and Heidi get ticked when I use suppositories with you because they say it is addicting - although i think that would be the least of your problems. Anyways, just make my day Jakey and POOP!

Love,
Mommy

Junky

Dear Jakey,

So it has been a week and you are still not all the way better. What is up with that? I thought we were getting through this one easier, did you change your mind and forget to let me know? Here we are  - getting closer to the end of the week and I am going back and forth with if I need to take you back in to see Dr. Hawthorne. You've been to school all week, although mostly sleeping through it and you sound way worse now than the last few days. I am hoping Karen can pound some of it out of you. I think we also need to do regular nebs. Maybe you are just protesting Daddy going away again?

Get better little buddy.
Love,
Mommy

Big vs. Little

Dear Jakey,

Our life always seems to change focus in somewhat big swings. It was only last week that Mommy was talking to Dr. Browning with some degree of frequency and we were so focused on a diagnosis. Then you got sick, and that has fallen to the back burner. I know that yesterday Dr. Browning, Dr. Caruso and a lot of other neuro-radiologists were spending time talking about you. It just didn't seem as urgent to me to find out what they said or what they learned. Today I feel like we are still focusing on the smaller yet super important things - we need to make sure you get all the way better, make sure you eat well and enough, finish your antiobiotics, start Vimpat tomorrow and all those kind of things. A diagnosis doesn't really fit on our to do list this week. Maybe next week.

Love,
Mommy

Ethan's wishes

Dear Jakey,
You must have been on your brother's mind a lot last night. On the way to soccer last night, while you were home with Cait, he announced that he wished you could play soccer with him and be on the same team. It caught me off guard but I agreed with him. I would be so happy to be able to watch both my boys run around. Anyways, I asked him why he was thinking about that and he told me that he really wished Caleb knew him because he is so nice and Jake would like him. Sometimes I forget that it isn't always easy on Ethan either.

This morning he brought it up again. Over breakfast he said that he wished you could walk and run and play soccer. He said again how he wished you could be a polar bear too. When I asked him if he would help you out when you were learning though - he said "oh no  - he'll have to chase me just like everyone else!"  Maybe Ethan knows something I don't know - he probably does. I suspect it is annoying with people always having to do things for you and if given the opportunity you'd probably just want to be treated like everyone else.

Love,
Mommy

Kisses

Dear Jakey,

I miss you. I am happy you went back to school but I miss you! I got used to some serious snuggle time the last few days. When I got you dressed this morning, I kept giving you kisses and you kept making such a grumpy face at me ! It was pretty cute even though you looked totally annoyed. Just when I was about to stop though, you gave me your happy face and then I just had to kiss you up more. Now I choose to think you were digging the kisses!

Love,
Mommy

:-(

Dear Jakey,

I write you this letter with uncertainty of when/if I will share this one with you. Most of the time these letters are our real conversations but tonight it is more thoughts in my head. I don't know how you do it  - how you are totally dependent on others. It must be so disappointing. I am sure it is. While I don't think I am the most independent person around, I do know that life is easier when you only depend on yourself because in general others dissappoint. How do you do it? Always the victim to others needs and wants. At least I always want the best for you - you may not agree with it and may get pissed off. - I know tonight you were not happy to have meds more than an hour late and made it clear by puking on me!  But you recovered, took your meds and were over it. Probably just another reason you are more mature than me - you get over things much better.

Love,
Mommy

Crazy squirrels

Dear Jakey,

What a crazy adventure we had last night!  Not one, but two squirrels trapped in our chimney!  It was a total racket with so many scary sounds coming from our chimeny. We didn't know what was going on and we were all pretty freaked out. It wasn't until Dundee came and caught them that we knew for sure what was causing the noise. When it really got loud, Ethan stood by you and was once again, your fierce protector. As the squirrels were getting rowdy, he quickly covered your ears so that you wouldn't be too afraid. When Dundee arrived and we were told to sit very still (in case the squirels ran amok - which one did) he sat very close to you and kept you safe. Ethan made me proud last night and put you first over his own fear. You are a lucky boy to have the best big brother ever!

Love,
Mommy

Choices

Dear Jakey,

I sit here with you little buddy and while you seem to be a bit better you are not back to normal yet. I have to tell you though that I feel pretty good with the way we dealt with this recent bout of sickness. I hope I am not speaking too early and you have no other tricks up your sleeve!

Slowing down these last two days with you has gotten me to do some more thinking. I was thinking about choices people make - the ones where they think they don't have a choice but in reality they do. I get so sick of people complaining about having to go do things  - "i wish i didn't have to do....." or "i wish i didn't need to go to ......." Now mind you, I am probably the biggest complainer of all but it is all so stupid. If only everyone that complained caught themselves and realized that they did in fact have a choice, they could say no, they have that power - it might not be the right thing to do but they could do it. You can't. You don't have the simple choices that everyone takes for granted. You rely 100% on us for everything. The thing that worries be most - more than the seizures, genetics and all the other stuff is that I (we) are completely responsible for keeping you safe. I watch other kids be crazy but then i see their self-protecting instincts - putting their hands out to catch a fall or moving out of ball headed their way. Your body won't let you do that and it scares the living hell out of me. I hope I am doing enough to keep you safe, healthy and happy my little buddy. You mean the world to me and next time you hear me whining about something try and tell me to shut up.

Love,
Mommy

Indecision

Dear Jakey,

You are up to your old tricks my boy. Are you a little sick or about to be a lot sick? So hard to know. I wish I knew. You would think I would be better at judging this by now but each time I have no idea what to do. This morning was no different. You had a wicked cough last night - really sounded terrible and hacking but you weren't as wheezy as you usually get when you are getting sick. Also no fevers so I remained optimisitic and woke up with plans of sending you to school.

But then you were warm - not too hot but 100 so I called school, cancelled the cleaners and rearranged the morning. And then 30 minutes later your fever was gone. I think you sometimes switch it up just to keep me on my toes. The cough remains wicked so we will go see Dr. Hawthorne and see what she thinks.

It is so scary when you get sick because it tends to not follow anything typical and each time I don't quite know what to do. I also have to worry about other odd things - like when you cough are you going to knock yourself off your chair or couch? Will they catch that at school? We don't need any accidents. It is much different than when Ethan is sick and it just means lots of fluids, naps and TV. Nothing major to worry about and he can certainly tell me whatever he needs. You, however, can't tell me and while I usually feel confident in my ability to interpret what you tell me, when you are sick all common sense goes out the window and I second guess it all.

Maybe today though is the day it will change. Maybe it really just is a cough that needs rest and fluids. Maybe the fevers won't come back, we won't need nebs and antibiotics and you will be back in school tomorrow (and I can make it to my hot yoga class). Maybe.......

Love,
Mommy

Jake's People II

Dear Jakey,

Today you had Minor Improvements with Karen after school. You were sleeping when we first got there so I am not sure how much you heard of our conversation. Karen was pretty stressed out but I think she was pretty excited that you were there and she would get to work with you. When I left I was telling her she should talk to you because you are a good listener. I was kind of joking but I also was sort of serious - even though you can't talk back you have a way of making people feel like you care about what they say (most of the time - sometimes you pay us no mind!)

Anyways, I came back 45 minutes later to pick you up and Karen was much happier. You really have this amazing way of making people feel good. I am not sure how you do it but you take what we give you and manage to make us feel better. Your eyes are so expressive sometimes that you don't need words - we can understand what you are trying to say. When I left with you, Karen thanked me for bringing you in today. That sure makes your mommy proud!

Love,
Mommy

Papa Smurf

Dear Jakey,

I know you already know this but you have quite the amazing Daddy. It is so important to him that you participate in all of our family stuff, things that I sometimes would keep you from. Not so much because I don't want you there but because I just always worry that you would be bored or neglected while we are out doing stuff. Yesterday was the Monster Mash - I was going to schedule Cait to stay with you but Daddy said that you told him you wanted to come. He was right and took such good care of you when we were there - when Vera and Ethan were getting their pictures taken he brought you right over so you could be a part of it. Miss Kelly brought me the pictures today and boy did you look cute! You looked pretty happy too so I think you did want to be there. I also caught him chatting with you but wasn't sure what you two were talking about - I guess it was some father/son secret!

Anyways, I want you to remember that your papa smurf loves you so so so much even though I hog you all the time and don't share so well :-)

Love,
Mommy

Giving Thanks

Dear Jakey,

Today at church, Father Paul talked about being thankful. He talked about being thankful for all the little things and not just the "big ticket" items - family, friends, etc. He talked about waking up and being grateful for his morning coffee, his breath of fresh air, his legs that walked him across the field. It got me thinking. We are grateful for so much - yet among the things he talked about taking for granted was something that would be incredibly monumental to you. We cannot take for granted that you could walk across a field and take a breath of fresh autumn air. These are the things he spoke about in the scriptures and things we need to think about and be grateful. He spoke of thinking of a hundred things that we are grateful for and it seemed harder to me as I could not use some of the examples of things that so many of us take for granted. Yet I am thankful for so much more because of you - I appreciate what each breath can mean, I appreciate what being healthy means - because those of us close to you know what it is like when health is taken for granted. Last May when you had pnuemonia, and you were in a body cast I think each of us were hanging on to each of your breaths and were truly scared of what may happen. You have taught us to be grateful for each moment.

Today I can say that I am thankful for the knowledge we have. Yesterday I couldn't say that. Yesterday I spent the day being sad and aggravated about the converstation we had with Dr. Browning. While it was a productive conversation and today I can say I am thankful for the dedication she has towards finding a diagnosis, I couldn't get out of my own way yesterday. Yesterday was hard. It is not easy to know that the things we are learning are things that will only make your life more difficult. I wish that was not the case. I wish the things we learned gave us easy answers. Regardless, I am thankful for you and for each moment with you. I will resolve to not take things for granted that others are thankful for and try to recognize each moment for what it is. I will talk to Dr. Browning again on Tuesday with positive energy and belief that knowledge is power and will be thankful that someone cares enough to work so hard for you.

Much love little buddy,
Mommy

Waiting Game

Dear Jakey,

Dr. Browning called yesterday afternoon and somehow I missed the call and just got it about an hour ago. Not sure how I managed to miss that. Anyways, I have called back and we are now waiting for her return call. I may have to page her soon and enter stalker mode. Not sure I can go into a long weekend without hearing back from her.

What do you think she is calling for? Not just to say hi that is for sure. She must have learned something from the biopsy. I wonder what she learned because I can't imagine she would just call without any big news to report. I hope I am not building this up to something bigger than it is but I really would like to hear what she has to say.

Apparently, I have bored you with all this because you have fallen asleep in your stander. You probably have the right idea though and are smart to not get all worked up like Mommy. Regardless of what she says or what we learn, all will remain the same. You will keep being a rockstar and Mommy, Daddy and Ethan will keep loving you up. But a diagnosis would be nice....

Love,
Mommy

Milestones

Dear Jakey,

I tell you these things because I want you to understand how much I love you. I also want you to realize that I understand how hard you work at certain things each day and I hope you realize that I know every movement you make, every bite you eat and every breath you take is a gift and a milestone. It is kind of hard to explain to others because as a mom you are so used to typical milestones. I'm not going to lie - I can't help feel a twinge of jealousy when I hear other moms reach different milestons - whether it is no more diapers, all kids off to school, leaving kids with grandparents and going on vacation with significant others or even having grown kids out of the house - all these things we will not likely meet and it sucks. BUT that is really only me being selfish and the real reality is that you achieve so many important things each day that I couldn't imagine giving it up. You are strong enough to beat down the seizures, fight the infections and keep on truckin'. Those may not be typical milestones but they are good enough for me. Stay strong little buddy!

Love,
Mommy

Seizures suck

Dear Jakey,

What does it feel like to have a seziure? I wish I knew. Last night sucked, huh?  Every time you fell asleep, you had one and it woke you up - for hours on end. It seems like it has been a while since they were so bad. I can never figure out what happens when they get so out of control - sometimes I think it is cumulative and a delayed reaction to being so off schedule on Monday. But who knows? Sometimes I think there is no real answer so all my analyzing doesn't really get us anywhere.

It makes me so sad when they screw with you like that though. It's like a bad joke - just when you think that you are finally able to rest, there comes another. I keep thinking position will help but of course it doesn't so I probably only annoy you more by moving you around.

I think we are doing a good thing getting you off the clobazam but you certainly are having more seizures. Selfishly, we all prefer that though to the super sedated way it makes you. Unfortunately you are the one whose opinion counts the most and we have to guess at what it is. I hope we are at least close. The gelastic seizures appear to be back - the ones that make you smile and almost giggle - it is really quite bittersweet because as much as I miss your smile I don't really want to see it when you are having a seizure. At least it makes me think that they don't hurt you though and hell, if it gives you some sort of pleasure then it can't be all bad. Ethan really thinks you are laughing and it makes him feel good that you might be happy.

We are going to start a new med soon - I was hoping to hold out until after we made the next change in clobazam but maybe we will re-consider. It is up to you buddy - let me know however you can. If it means having a few more shitty nights, I'll get the picture and we can start the vimpat sooner. Once again, you are the strongest boy I know.

Lots of love,
Mommy

Deal?

Dear Jakey,
Last night was G-Pa's golf tournament for the Epilepsy Foundation. You have somehow become the posterboy for epilepsy around here - not sure how or why that happened but a lot of people came out to golf and many came in support of you. I wonder what you think about it. It always seems a little ironic to me because we do these things to raise money and awareness for epilepsy but it seems like these events are hard on you. Your schedule is all off and you have to deal with people making well-intentioned but weird comments. Most of the time you go to sleep and I can't blame you. Sometimes I wish I could join you! 

It feels like we pimp out out sometimes and I am always torn up about it. Although for the most part I think the greater good is worth it - raising money and awareness about seizures so you and others can have a better life - all of me doesn't think it is worth it. Sometimes I feel like people use you to feel better about themselves - like "thank god that's not me" or "my child is not that bad". Sometimes people actually say that and while I know they don't mean anything malicious by it, as your momma it makes me feel so defensive and crazy. But again, I keep going back to the greater good - we (and by we, I really mean you) teach people so much about strength, love, priorities, endurance and bravery. You are a rockstar.

So, my boy, I promise that tonight we will be right on schedule -eat when you are supposed to, stand when you are supposed to, and fall asleep when you are supposed to. Your job is the same - eat when I feed you, stay in your stander for an hour today and sleep way better than last night. Sound like a deal?

Love,
Mommy

Fire Trucks

Dear Jakey,

On Friday, Xavier was here to work with you. You guys were doing your thing in the therapy room and I was in the kitchen. At some point I hear Cait say "Look Ethan, Jake's riding the fire truck" and heard them go in the other room. I ran in to check it out and there you were - sitting on the fire truck with super wide eyes and waving your arms around. Your excitement was contagious. I grabbed my phone to start taking pictures and we were all watching you have fun. Xavier commented on how this was the most movement he had seen from you in a while. You looked awesome and we could all tell you were having fun.

I emailed pictures off to Daddy, Abue and G-Pa and everyone responded the same : "Awesome" "Great"! You really did look like you were thrilled. It got me thinking on how important it is that we remember to include you in all of our play and fun. Sometimes I think it must be annoying to you to have us always have to move you or do things hand-over-hand but you reminded me on Friday that you do like it and that we should keep doing it. 

So, I promise to make a point to include you in things in a more active way. We started yesterday when Daddy and Ethan were having their "Mariofest"  - you and I joined in. Unfortunately for you, you were teamed up with me and I put us to shame with 0 points and consistent last place finishes. Sorry buddy. Next time we should get Daddy or Ethan to help you. But we did a much better job with table tennis on the Sports Resorts.  It  is not only good for you to be included in the games we play but great for Ethan too. He is convinced that you are the best basketball and table tennis player ever in the wii since your mii kicks everyone's butt!

Get ready buddy - when I make an apple pie this week, Ethan won't be the only one helping!

Love,
Mommy

Jake's People

Dear Jakey,

Something special happened today. When Cait came in there was an envelope in the door. It was a letter to you! It was from Linda, your old friend (not old in age, old in that she's known you since you just turned 1). She used to come over and do speech therapy with you. She did a lot to help us with eating and figuring out the tricks to help you swallow and clear the food out of your mouth. Without those tricks, we probably wouldn't be able to feed you by mouth! In your life, you have had many people who have made a big difference. She is one of your people.

I wanted to write the letter she wrote because it was so beautiful, it made Mommy cry which hasn't really been so hard lately. I read it to you before but I want to keep it with the others so we can always go back to it when we need to.

Dear Jake,

Because of this life you have chosen, you will always know the spark of the Divine, as it will never be clouded by envy, pride, greed, or any of the things that keep the rest of us from knowing the real truth of life.

Because of this life you have chosen, you teach us compassion.

Because of this life you have chosen, we learn true selflessness.

Because of this life you have chosen, we learn about unconditional love.

Because of this life you have chosen, we learn what real sacrifice is.

Because of this life you have chosen, you retain your innocence - something each of us needs in order to return to our Father. Your family, friends and teachers receive important lessons that could not otherwise be learned.

You have given us these opportunities, and for this I am grateful.

In peace and love,
Linda

Jakey - you are a strong and beautiful boy, and we are all better people because of you (I know you have heard G-Pa say that a million times).

Love,
Mommy

Silly Song

Dear Jakey,

When you were little we used to sing you a song. It went like this:

Jake, Jake, Jake
Jake, Jake, Jake
Jake Your Booty

It was pretty catchy and I think you liked it. Daddy refused to sing it but the rest of us did it all the time. Even Miss Briana and Ava.  We might have to bring it back.

Love,
Mommy