Life with Fragile X Syndrome

2012 Fragile X Conference in Worcester, Massachusetts

Melissa

We have a ton of things going on here at home and work and soon we will be jumping on a plane and heading to Washington, D.C. for Advocacy Day. Even knowing we had all of this going on we decided we had time for one more *little* event…

On April 14th our LINKS group and the Western MA group will be hosting Tracy & Mouse of Developmental FX. Eep! I swore when we started this group that we would not be doing a conference. Mmmm…yum…eating my words now. We will have lots more to share very, very soon but in the meantime please save the date for us! It will be a full day conference!

Check out the announcement on the LINKS blog:

April 14, 2012 – Fragile X Conference in Worcester, MA.

The future is?

Melissa

I cannot even begin to guess how many times my worries have turned toward the future since our diagnosis. There have been so many nights of tossing and turning as I worried and wondered, “Will Monkey ever…walk, talk, be potty trained, have seizures, learn to read, learn to count, tell me he loves me, enjoy school, learn to drive, get a diploma, go to college, live on his own, find love, have children, have grandchildren?” And those are just the highlights, in between are a thousand other smaller worries.

One of the most awful parts of living with fragile X is the not knowing. If only I had a crystal ball then maybe then I could be prepared for what the future holds, maybe I could worry less and enjoy more. Unfortunately, my crystal ball seems to be slow in coming. So I’ve muddled along, finding reassurance in the fact that others who have walked this path before me have survived the not knowing and built very nice lives for their kids. I know it is possible, everything is possible, and I focus so hard on that and try to push the worry away. I have had mixed success, to be honest, but I’m still trying.

This morning Eric was helping Monkey pick out clothes. Today was a non-uniform day at school which we all find ridiculously exciting. OK, honestly, I think Eric and I find it much more exciting than he does. Our little Monkey sees no problem whatsoever in wearing the same color pants and shirt every day, in fact, I am pretty sure that is a bit of fragile x heaven! He is not only allowed to but is required to ((Along with everyone else!)) wear the same thing day after day after day. Not today. Today he had to chose.

I was putting on my make-up and I heard the two of them discussing the t-shirt options. I have an unnatural love of t-shirts so Monkey has drawers positively stuffed with a variety of colors, characters and sayings. You might be shocked to hear that I lean markedly towards the positive message t-shirts ((Or not!)). There are no snarky t-shirts in those drawers though my attitude is snarky in general. I like nice, uplifting messages for my boy to wear as armor when he’s out in the world.

I half listened as I tried to get my eyeliner to cooperate ((Srsly, it should not be so hard!)) and I heard Eric offering up shirts for consideration. “This one? How about this one? You pick!” Then there was the moment when the “Nope, nuffin’,” “Not work, too big” protests stopped.

“This one? You want to wear this one?” Eric asked.There was no answer I could hear but I heard Eric reading the shirt, “The future is…” and he paused to let Monkey read it.

Monkey hesitated a second and then said, excitedly, “Awesome!”

I nearly started crying and ruined my just applied eyeliner. The t-shirt actually says, “The Future is Mine.” but Monkey has shown us over and over again that there is way more going on in that little noggin than most people suspect. I can’t shake the feeling that maybe he is my crystal ball…that the future really is awesome…

Pinch me.

Melissa

It’s hard to believe but, this morning, Eric and I attended an IEP meeting with Monkey’s teachers and his specialists and we left the meeting laughing. We have meetings scheduled every 4-6 weeks per his IEP and we love being able to touch base so frequently. We have daily contact with his main teacher both in person and by e-mail but less so with everyone else so it’s really nice to sit and hear what everyone is working on with him, what’s going well and what else they’d like to try. It’s nice to feel like we’re a part of the team…they take notes when we make suggestions. Whoa.

Today’s meeting was just so amazing…someone actually knocked on the window of the office and playfully shushed us because we were all laughing so loudly. Craziness. His teachers and specialists genuinely love Monkey ((*shocker*)) and appreciate his zaniness. They don’t see his personality as disruptive; they see the potential for using his sense of humor to bring out other skills. That’s huge!

First, part of why we were laughing is the obvious enthusiasm of his teachers. They get very, very excited when they’re sharing about Monkey. “Just look at this graph!” and his primary teacher will hold up something like this (this is totally made up but the graph looked a lot like this):


How can you not love someone who loves graphs? If you are a geek, like us, you simply can’t not love her.

Another part of why we were laughing is that Monkey is doing so amazingly well! One of the charts that his teacher showed us had data points that didn’t even fit on the graph! He is literally off the charts in areas. That makes our hearts positively sing.

Finally, we were laughing because Monkey has a terrific sense of humor and the stories they tell of him doing day to day tasks had everyone cracking up. His terrific sense of humor and all around lovely personality has created a bit of a problem though.

It seems that independent reading, just prior to Morning Meeting, is becoming a bit disruptive. Apparently everyone wants to read with Monkey and so he ends up surrounded by friends each trying to get him interested in their book. You can imagine how this might not go very well but…it’s not actually Monkey that is the problem! His teacher reported that he handles it really well, better than she would in his place even, but the other kids get loud and a bit pushy, lol. They are now assigning a reading buddy for him so everyone gets a turn reading with him. Nice problem to have, eh?

There was one last thing that made us laugh that has nothing to do with Monkey but the other students. They are all so interested in him that they follow his every move and recently his inclusion teacher found a piece of paper in the room. It was scrap paper they had been using and on the back was a random/general data tracking chart. The kids had been taking data!

Man…we have just hit the jackpot here. Awesome teachers, awesome specialists and awesome friends. Sometimes I think, “Pinch me, this can’t be real.” But then again, if it’s not, I like my dream world so just keep your fingers off!

So you have decided to attend Advocacy Day!

Melissa

First, let me say…if you are on the fence and you are letting your carrier anxiety hold you back just pop on over to the NFXF’s beautiful, new website right now and sign up. Do it real quick, don’t think. Just…do it. Advocacy Day is March 6th and 7th 5th and 6th ((in 2013)) in Washington D.C.

Register Now!

OK, good! Yes, I know, you feel like vomiting but it will pass. I promise. Now that you’re signed up to attend I thought I’d share a few helpful tips for a first time Advocate.

  1. The Foundation will have a series of web events/conference calls before Advocacy Day, watch your e-mail and attend. You will get to hear from Jeffrey Cohen, the Director of Government Affairs & Advocacy, and other team members about what to expect. They have been doing this since 2004 and they will have helpful information.
  2. On Tuesday, March 6th 5th starting at 1pm there will be training. We will all sit in a big conference room and we will be told what we are asking for and why. We will be given a chance to practice what it is we want to say. In advance, what you need to know is that the most important thing you will say during each visit is WHAT BROUGHT YOU TO DC. The staff and/or Congressmen know that this is a big deal for a citizen to take time and money and to visit them in DC. They already know this is important to you and they will respect that. Tell them why you came…I’m guessing it’s because you have a friend or family member who is affected by fragile X, one of the other FXDs or maybe both.
  3. Bring a picture(s) of your friend or family member. Some people leave copies, some do not. That is up to you. What we did was show the picture, talk about Caleb, make “the ask” (fancy advocate speech, aren’t you impressed?) and moved on to the next appointment. The day after we returned from DC, we e-mailed the staff members for both of our Senators and our Congressman and we included a copy of the picture in the e-mail. It saved us from having to print and carry them and it put a face to the e-mail. A really cute face.
  4. Bring a business card. You can use a print from home template if you don’t have one. You can use a professional one too if you have it, it’s up to you. You just need to have some way to leave them your contact information. They will give you cards in return. You need them for the e-mails you will send when you get home.
  5. Attire, the training and post-training dinner are casual. The day of the meetings is a different story. Dress in a way that shows the respect you have for the institution. Suits/ties for guys, Suits and/or dressy day wear for women.
  6. COMFORTABLE SHOES. Is that enough emphasis for you? The halls are marble, in between you will be walking very, very quickly on sidewalks. These are hard surfaces and can leave you sore. This might not be the time to break out heels if you don’t normally wear them. This is definitely not the time to be breaking in new shoes! It might be a great time for some of those gel inserts.
  7. Think “layers” it might be 30 and windy, it might be 70 and sunny…it might be *both* during the same day. Come prepared to shed layers.
  8. Security is understandably high on Capitol Hill. Every time you enter a building you will need to clear security. Pack light. Ladies, empty your purses of all that crap that builds up and just put in the essentials. The size of bags is restricted so really, think minimal, easy to search.
  9. Essentials
    • ID. Duh, right?
    • Breath mints. You are going to do a lot of talking and your mouth will get dry. You can’t bring water through security but you can purchase it at some locations inside. You might not have time to stop or the good fortune to walk past them.
    • Cash. You might want to grab a cab to get from one location to another. They provide a bus TO Capitol Hill but you are responsible for your transportation back to the hotel. It is Metro accessible and you should, by all means, feel free to take it for the adventure but plan in advance to take that cab. It’s not expensive and you will probably be really, really happy that it’s an option.
    • A camera. The buildings are gorgeous, there is history everywhere you turn, you’re going to be seeing old friends, meeting with new ones or maybe even meeting old friends who you only know through Facebook or the e-mail listserve or…say…an amazing blog! If you do meet with your Representative or Senator personally, most meet with a staffer, you will want photos of that too.
    • SNACKS. You will be running from one side of the Hill to the other and maybe back again. There will be a lunch break scheduled and you can eat in the dining rooms but you might not want to count on it. The dining rooms are *crowded* and finding a place to sit, after waiting in line, will likely eat up your entire break. We had 5 minutes to scarf down our food before we had to run for the next appointment. I should have just had a granola bar. We cannot bring food onto the House floor and we will be getting an amazing tour led by Representative Gregg Harper (who has a son, Livingston, with Fragile X) first thing in the morning. The House floor is not open to the public, this is a very special event and it is worth the trip all by itself. There are convenience stores located in the office buildings, I suggest trying to stop and grab a snack as soon as you can so you have it should you need it ((I am so going to need it!)).

Now that I’ve made this sound like a hectic, exhausting day let me just add that it is amazingly invigorating. At the very least, you will meet in the neighborhood of 100 to 150 parents, friends and siblings of kids with fragile x. That alone is worth the trip…to be able to sit down to dinner and tell a funny story or brag a bit and not have to explain *why* it’s funny or brag-worthy Also, after dinner, we usually congregate in the hotel bar to chat and maybe have a cocktail before we turn in early ((*wink*wink*nudge*nudge*)) so we are refreshed and energized for the next day ((As if FX parents would know what to do with 8 hours of uninterrupted sleep!)).

The meetings themselves are empowering too though. You will have the ear of the man or woman who makes the decisions on funding for research, who write or vote for or against laws that can change your child’s life. A lot of the time fragile x feels like this thing that happened to us, something that blew into our lives unexpectedly and tore apart everything we thought we were or knew. This is a chance to be an active participant in making things a little better for other parents and hopefully yourself and it feels so good.

What *if* you really and truly cannot come to Washington, either for lack of childcare or lack of funds but you really, really want to help? You can write letters!

The Foundation will have a template you can use so you are asking for the same things the rest of us will be asking for. If there are people from your state going they can use those letters to get appointments to speak with your representative when they would not otherwise be able to do so. If there are no other people from your state going the Foundation will deliver them. Getting a handwritten (or typed but signed), physical letter will make an impact that an e-mail will lack. It shows commitment, it shows passion, it shows that you…the people who vote in the next election…care about this issue.

SO, who is with me??

At loose ends.

Melissa

I don’t know how else to describe myself these days but to say that I am at loose ends. I’m not very good at grieving, I guess. I expected the tears. I expected to keep being brought up short when my Bubba wasn’t where I expected him to be. I expected the emptiness. I expected to be constantly tired. I expected to be revisited by my old friend insomnia. I didn’t expect this restlessness. This feeling that something is missing that stays at a low level in the background of my consciousness all day, everyday…even when I’m otherwise occupied, even when I’m happy.

Sometimes I look at Barley (aka, the other dog) and I get the feeling that he’s there with me, just as lost, and I feel awful that I don’t know what to do for him. I guess there is nothing to be done. This isn’t something fixable. I had hoped that having Copper back home would help but Eric picked up his ashes over the weekend and this is still there. I know time will help but, despite feeling like time is moving way too fast in every other way, it seems at be running at a snail’s pace in this regard.

On a happier note, Monkey is feeling mostly better and he returned to school yesterday! We were all very happy and when we got to school he had more cards from friends. They made me smile, there are a LOT of hearts and a LOT of love in these…click on each image to enlarge.

Sicky boy

Melissa

Since Wednesday of last week, Monkey has been feeling punky ((HAHA!)). He has a nasty, dry cough that once it starts…normally ends in puke. Hey! Have you ever seen a kid cough and puke at the same time??? Oh, man is that FUN! You need a fire hose for clean up. Ugh. Mixed in here and there with the puking were some fevers, just to add some flavor to the mix.

Kids must be fever and vomit free for 24 hours before they can go to school…Monkey has qualified only 1 of the last 6 school days. We have our fingers crossed for tomorrow, he hasn’t thrown up since Wednesday night…now if he can just string a few hours of sleep together we will be golden.

Earlier today we received an e-mail from his teacher asking if she could stop by on her way home to drop off our binder ((All our data! Tracking! CHARTS! That show Monkey is progressing very nicely *phew*)) and a few cards from his friends. Eric and I immediately swooned, I mean, can she be any cooler? Then this evening when I got home I read the cards and swooned again. His classmates are just too darned sweet! The cards are a mix from his substantially separate classroom and his inclusion classroom.

I’ve got to share them they’re so adorable…click on the photos to enlarge them.

He is loved, he is missed, he is the class clown…he is valued. Have I already mentioned how awesome this school is? Because it is…very.

I laughed more than I cried today.

Melissa

I call that a good day.

For those who are still unaware, we had to say goodbye to Copper last Friday. Even after everything we had been through with him, even knowing for weeks that our time together was limited, I was still surprised by how quickly it all happened at the end. At the beginning of last week I had said to Eric that I thought we might not leave the vet’s office with him after his Friday morning appointment and then my boy, a fighter to the very end, rallied and I allowed myself to hope for a little bit more…I am a greedy girl.

Unfortunately,  his rally was more based on his fighting spirit than actual improvement. Monkey was home sick and had accompanied us to the appointment. He was very upset and did not want to take Copper inside when we arrived. After I promised him that we would take Copper home with us, he settled down. Then Copper collapsed in the vet’s office during the exam. Eric took Monkey to the car to wait while the vet and I discussed how to proceed. She did not think it was time to euthanize him, she thought with an adjustment to his medication we would be OK.

She ran some simple blood tests while I waited just to be sure there wasn’t anything more going on. When she brought back the results, the printout was covered in red ink. His kidneys had failed. I was given 2 options, 24-48 hours on an IV in their emergency hospital or euthanasia. I had promised Caleb that Copper would be going home with us. I also just knew…his time was short even with the IV treatment. I didn’t want his last days to be spent with strangers in a hospital. So she gave him fluids under the skin and I told her I would call our regular vet for an appointment the next day.

When we got home around 11, I convinced Copper to eat a bit and we cuddled on the couch. By 2 he was too weak to move around and I moved our appointment to that afternoon at 4. It was utter torture to sit there with him, knowing the minutes were ticking away bringing us closer to our goodbye…mostly because they weren’t going fast enough. I know that sounds horrible but my love for him, this dog who was the only lifeline I could see when my depression had been at its worst, was such that I couldn’t bear his pain. I would take my heartache and grief gladly if only to spare him those painful hours.

Many years ago I promised Copper that I would never leave him. As hard as it was, I kept that promise until his last breath. I’m glad I was there, I know he was completely comfortable at the end. I heard his last breath and felt the last strong beats of his heart, he did not suffer. The suffering is left for us to bear. The only moment I feared I could not cope with was the moment when I had to finally break the promise and leave him there while I went home. It took a long time for me to do it but I did finally do it. I am counting the days until he comes home again for good. I won’t leave him again.

I know there is a good percentage of people who think I’m nuts, some might even be related to me…but he saved my life. When I had to make a promise to my doctor, all those years ago, when she wanted to admit me to the hospital to treat my depression, I promised I would not hurt myself because I couldn’t leave Copper. That promise that I had made to him when I adopted him was the promise I leaned on when I didn’t have anything else.

So today, when my son was spraying me with vomit, I laughed because, really what else can you do at a moment like that? And I suddenly realized that I had laughed a lot today. Even though there is ((and always will be)) a Copper-shaped hole in my heart he did more for me than I could ever hope to do for anyone else. He had been my reason to keep going and, because I did, I found a whole new world of reasons to keep going. I have Eric and Caleb and Holly and these awesome ((fucking)) Mamas I go out to eat with every month and the Cupcake ladies and CANADA and the Pinterest peeps and you…each one of you reading this and supporting us and loving us…it’s all a gift from him.

So if my love for him seems over the top it’s because his gift to me was so…wondrous.

It’s snowballing, in a good way!

Melissa

We were “reluctant” to move Monkey to his new school, you may recall. We I threw more than one hissy fit in which I wailed over the unfairness of it all. I do still think it was unfair for the district to assign him to 3 schools in 4 years but now, with the benefit of hindsight, I can see this was the exact move he needed. Just, you know, maybe a year earlier letting us skip school number 2 but whatever! 😉

Today we had an appointment with C’s developmental pediatrician at the Fragile X clinic here in Boston and I was left giddy and a bit breathless by it. That’s new and, I have to say, it’s way more fun than leaving the office feeling brittle and broken! I’d like to do this more.

Our last appointment was 5 months ago, before Monkey started at the new school, so the pediatrician’s last impression of us was one of pure anxiety and anger. We were still furious about the entire IEP process, we were still prepared to hate…well…everything. So when he asked us how things were going, I don’t think he expected to hear me say, “Perfect!”

Of course, thing are not really perfect. Copper is still dying, Caleb still has fragile x syndrome, I still struggle mightily with depression, I have friends who are hurting badly but…given all that…we’re still pretty good which is way better than I would expect. In that 1/2 of a second between him finishing his question and my mouth opening, the last 5 months flashed through my mind at warp speed and since, “Fucking awesome!” didn’t seem appropriate ((See, I do have a filter!)), “Perfect!” just popped out.

Of course the doctor wanted to know details and so I flashed through the highlights: learning to read, loves school, interacting appropriately with peers, well liked in general, interacting with less familiar adults with ease, opened every single Christmas present in an age appropriate manner and time frame ((i.e. like a BEAST!)) and, oh yeah, STUDENT OF THE MONTH ((ZOMG!!)).

The look on the doctor’s face went from intense and interested to incredulous to one of pure joy…and he did a full on fist pump when I hit him with that last tidbit. There was nothing I could do but laugh at his obvious excitement over Monkey’s accomplishments. I really needed to look at all the things that are good and getting better today. It was an added bonus to see the doctor totally lose his calm, professional demeanor there for a bit.

I know that changing schools wasn’t a small change but I truly never expected for it to affect so much of our lives in such a completely positive manner. I have not one negative or critical thing to say about his teacher or aids or staff or…well…about anything. That’s pretty damned amazing since I’m better than average at finding the negatives. Not only can I not find anything negative to say, I find myself singing their praises…almost daily. Seeing how much happier he is and how much he is growing and changing…how could I not?