Broken and stressed…

Broken and stressed…

Melissa

Eric isn’t going to be thrilled with this one.

Since Caleb was born we have been a united team. We don’t always see eye to eye but we’ve never strongly disagreed about how to respond to any situations concerning Caleb. Mostly he leaves it to me to research whatever issue we need to tackle and then we move forward together. Mostly.

In yet another example of the stress the end of the STX209 trial has brought to our lives, it has left Eric and I frequently staring at each other across a table or a room…united in loving each other, united in loving C, united in wanting the very best for him…but unable to agree on what that should look like.

If you know me (or have read anything here, really) you might have picked up on my tendency to lose my ever-loving shit when faced with surprises or change. I respond very quickly; most times with anger and then, once my brain kicks in and my adrenaline settles down, I cope. I figure it out. I move on. It’s over.

So my reaction to the news that the trial was ending was predictable…totally, utterly predictable. Right up until I jumped off the rails and refused to get back on. Much to Eric’s surprise, I refused to even discuss getting back on…the best he got when he tried was, “I don’t know.”

His attempts to calm me down, to try to swing my focus back to moving forward were met with two words and one finger. He tried a lot of different approaches. He tried to remind me that it wasn’t just about us, that there was a larger community out there. He tried reminding me that his job created a responsibility to act rationally. He tried reminding me that this would end and I didn’t want to make rash decisions that would affect Caleb into the future.

I listened to him, I understood everything he was saying and even agreed with it in theory. And, yet, I could not do what he wanted me to do. I could not call the research clinic, make the appointment to remove him from the medication and then move on. I could not do it. I counted out the pills we had left, I read the titration schedule and then I continued to hand him his pills day in and day out.

For 2 1/2 months I watched families lives fall apart as their kids weaned. I told some people that we had not yet begun to wean but certainly not everyone. A few amazing people who I told, offered to send me their left over pills. Of course, I could not accept them but I did appreciate the gesture. Eric gave up on trying to convince me. I even let myself forget, sometimes for hours, that the end was coming. Starting the titration was giving up hope…it was accepting that we had lost…that we had fought for Caleb and hundreds of other kids and we had lost. I couldn’t do it.

Last week, after school ended for the summer (C is in an 11 month program) and after the news piece was filmed…I gave up. We are now weaning Caleb from the STX209.

This past weekend three of my beloved Birches were playing tourist in Boston and I took Caleb along with us.

This lovely shot was taken by Holly on the way INTO town. He was in my lap because he needed some deep pressure and he would NOT STOP TOUCHING the cab driver, who was driving and attempting to concentrate.

It wasn’t good. He was impulsive, anxious and completely hyper-aroused. Even though we went to places he’s been before, places he likes, he couldn’t do it. We rode in an elevator, we ate fast food and then we rode on the T…all things he adores. And it reduced him to tears. I had to jump in a cab near Boston Common and bring him home.  By the time we got home he was crying so loudly that my MIL heard him from behind a closed door with an air conditioner running next to her.

It took an hour to settle him down.

So now, I have two words and one finger for … well, the world. He’s hurting for no damn reason at all, I know how to fix it but I can’t. Isn’t that some shit?

I think we may have been the last…I kind of hope there is someone else out there holding on to the hope that STX209 gave us. I feel so broken and it makes me unbearably sad that it’s truly over.

 

So you want to be on the local news?

So you want to be on the local news?

Melissa

Here, let me tell you how…

  1. Have the world’s most perfect, adorable baby.
  2. Find out that the world’s most perfect, adorable baby has fragile X syndrome.
  3. Fall into a years long depression, battle incessantly with anxiety…bonus points for adding a BIG HEAPING DOSE of guilt to that load.
  4. Meet some amazing, inspirational people…decide to be more like them, if you can.
  5. Find a drug that doesn’t cure your child but does make his life (and yours) a hell of a lot easier.
  6. Celebrate the joy of being a little more normal for FOUR LONG MONTHS! Dare to dream of things you long gave up on.
  7. Lose it all, in the blink of an eye.

Easy, peasy…except for the near constant stress of steps 1-5 and 7…it’s terrific fun! Sure, there’s weight gain (yay, stress eating), headaches, mental & emotional exhaustion, nightmares and a revisiting of that bastard depression but it’s all worth it for a nearly 2 1/2 minutes of video footage on the local news, right?

I wish I had stopped at step 6, in fact, I’d do anything to go back to step 6. That’s not going to happen for us. We have lost what we had and at this time there is no way to get it back. We’ve tried everything we know…we’ve begged, we’ve lobbied, we’ve shared our stories far and wide. And still…there is no going back.

Or…you can try this instead:

1. Buy a roomba.
2. Dress a cat like a shark.


(this story followed ours on the newscast)

That sounds way more fun, eh? I’d try that 2nd option first if you get a choice.

Quick, do the math! <3

Melissa

Eight years…how can it be only eight years that we’ve been married? I feel as though we have lived an entire lifetime, maybe two, together already. I remember when we first met and I said, “No, I’m not dating you. You are too young.” What I really meant, though, was “I’m too crazy. You’re too good. Run far, far away.”

I think maybe that’s how you won me over. You agreed with my rules, you agreed that we should never date…and then you wormed your way into my heart when I wasn’t paying attention. Suddenly I had a new best friend, who called to talk every night, who drove hours and hours to come visit me, who knew me better than I knew myself. I would have been scared or angry and probably messed it all up but you knew just the right time to break it to me. We were in love. Damn it!

Once we passed that point, it was full steam ahead. You proved beyond a shadow of a doubt that you loved me and that I would always be safe with you when you cried with me over the unexpected miscarriage. I thought you should have run. It was too soon for any rational couple to go down that path and yet…it broke our hearts…losing something we didn’t know we wanted. I remember telling you that it wasn’t fair to lose something when we had just begun to get excited. And you agreed, it wasn’t and instead of running you held me and told me we could have it again.

I’m not sure I’ve ever told you this but, I’m glad we didn’t elope to Vegas and get married by Elvis. You were right. I’m glad we had the chance to stand together, in front of friends and family, to start our forever. I needed that moment to acknowledge to you and to myself that I was done pushing you to run. I needed that moment to look in your eyes and tell you I loved you…in good times and in bad.

We couldn’t know then how amazing the good times would be or how awful the bad times would be but I wouldn’t give up a second of any of it. Good and bad, it doesn’t matter, it makes me love you more either way. Happy anniversary, honey.

The consequences could be worse.

The consequences could be worse.

Melissa

Do you ever have a moment when you get a little cocky as a parent? When you think you know your child so well that you know what they would do in any given circumstance? Put that way, anyone who says yes is nuts, in my opinion!

Alas, I fall victim to this from time to time. Early on I learned that offering choices makes life a lot easier with my (no so) little Monkey. Shortly after learning this lesson I learned another one, always make sure that ALL of the choices you offer are acceptable choices! That was a hard learned lesson. I never promise anything I can’t deliver…and sometimes I deliver more than I thought I could. I like those moments. Those are the moments I look like a hero. Those are the moments that make C’s face light up with joy, like when he asks for a jet pack and I pull out the inflatable wings from his Buzz Lightyear costume that had been abandoned in the basement without ever being worn for its intended purpose (Halloween.) I live for those moments.

I’ve become so accustomed to giving him choices that anything that I truly don’t care about…he gets to pick. Wide open. “Caleb, pick a cereal.” I don’t care, I won’t eat it. If I think he won’t like what he chooses I’ll tell him but it’s his choice. I even let him pick my clothes. He’s got good taste and as long as he’s picking from my “work” clothes…meh…it doesn’t matter to me. He’s gotten so used to dressing me that sometimes, when I get dressed without consulting him, he will grab my elbow and guide me back to the bedroom and fix whatever I got wrong. Usually everything. I think he’s just being oppositional, personally…I thought I looked fine.

There are some things I let him pick that I do actually care about, and that’s when I give him limited options. “Caleb, which ice cream? Cookie dough or S’mores?” Sure, I have a preference but either will work and if it keeps him from bolting to the front of the grocery store to stare at the people in the self check-out line? Win. Especially since he is like a shark circling and darts in to steal their receipts as soon as they print. Poor schmucks never even know what hit them…they just see a whirl of curly hair buzz by them and hear “I did it!” fading into the distance. Fortunately, most people are very nice when I walk sheepishly over to them with the receipt in hand. *sigh*

There are some things that I let him pick that I do actually care about, and I always give him the same options. “Caleb, which deodorant for Mommy? Blue or Pink?” He always, always, always, always picks pink, which is fine. I don’t mind smelling all flowery and girly. Last week, Mommy got distracted while at the drug store…I don’t know what it was, probably Facebook, maybe texts or e-mail…it doesn’t really matter. What matters is that Mommy was not present when she presented the choices.

 “Caleb, which deodorant for Mommy?”

“White.” And he shoved two sticks in my hands, which is when I put the phone down…my choices, though not given verbally, were either I take the deodorant or watch it fall on the ground.

“Uh, what?”

“White. All done! Good job! Good job!”

Huh. OK. White it is. “Good job, buddy!”

 

How bad could it be? You know what white is? Not baby powder, which I could have dealt with. Nope…it’s vanilla. I smell like a freaking cookie. It’s the one scent guaranteed to make my stomach growl in hunger every damn time I catch a whiff.

There are worse consequences though. Maybe next time Mommy will pay full attention when she’s offering up choices and not assume he will always, always, always do anything.

Frustration.

Frustration.

Melissa

I often wonder what it is like for Caleb when he doesn’t have the words he needs. Fortunately, he’s a fairly calm kid who deals with frustration well…he basically dismisses it entirely. He did not get that from me. When I am frustrated I am quiet too but I don’t dismiss it, I stuff it alllll down until I explode…mostly over the wrong things. The explosion helps, but it’s not very healthy.

Right now, I don’t have the words I need. My life has been twisted inside out and the last two months in particular have been awful…full of grief and anxiety. Full of fear. This past weekend my gorgeous, funny, loving BFF was here. We both needed the time together, her life hasn’t been any easier than mine lately. I knew I needed the time and I was holding myself together until she got here and then I thought I would fall apart. But the most amazing thing happened, I suddenly discovered I could breath again. The knots loosened, the feeling that there was a fist in my chest squeezing my heart and lungs just…disappeared.

By the time I got home after dropping her off at the airport though, it was all back. It’s crushing me now…maybe it was before too but before it had built slowly…this felt like a ton of bricks coming down on me. I know I need to do something. I need to find a way to fix this. I find ways to be awesome for Caleb and to make him happy, I wish I knew how to be awesome for me. All I know is to stuff it down, ignore it, cover it over, hide from it…I have a million different ways to do it but it doesn’t make it go away. It doesn’t make me happy, I miss being happy.

Simply amazed…

Simply amazed…

Melissa

Eric relayed the following story to me when they picked me up after work.

Caleb’s teacher (who is awesomeness, dipped in awesomesauce…she came to hang out with Caleb Monday after school so we could go to volunteer training for the fragile X clinic!) has been working with him on not blurting out questions…also on his quiet voice (*snort* I’m not sure he has a quiet voice!) They’ve been working on him raising his hand and waiting to be called on before he answers or asks a question. Today, this happened at snack:

Caleb raises his hand, “A question, I have a question.”

After being called on, “I want some chips, please?”

After being told no on the chips, “Doritos? ‘Ritos?”

After being told no on the Doritos, “Frrruit Snacks?”

After being told no on the fruit snacks too he was offered a choice, which he answered in a disappointed tone, ‘Goldfish.”

So many things about this are amazing, the impulse control, the quiet voice, the polite requests and acceptance of the refusals…but NONE of those are as amazing to me as this.

Someone said no to C.A.L.E.B. CALEB!

I bow down to his teacher. That kid would have ended up with chips, ‘ritos, fruit snacks and, most likely, “10 dollahs?” to boot if he’d been asking me…

Want to see something else amazing?

A thank you note to us and an I’ll miss you note to Caleb from his teacher. And this is his gen ed teacher, not the one who came to hang out with him for a few extra hours in her spare time…yeah, he’s a pretty special kid.

Balancing hope.

Balancing hope.

Melissa

Have you ever read, “Flowers for Algernon?” I remember reading it in middle school.

“The story is told through a series of journal entries written by the story’s protagonist, Charlie Gordon, a man with an IQ of 68 who works a menial job as a janitor in a factory. He is selected to undergo an experimental surgical technique to increase his intelligence. The technique had already been successfully tested on Algernon, a laboratory mouse. The surgery on Charlie is also a success and his IQ triples.

As Charlie’s intelligence peaks, Algernon suddenly declines — losing his increased intelligence and mental age, and dying shortly afterward, to be buried in a cheese box in Charlie’s backyard. Charlie discovers that his intelligence increase is also only temporary. He starts to experiment to find out the cause of the flaw in the experiment, which he calls the “Algernon-Gordon Effect”. Just when he finishes his experiments, his intelligence begins to degenerate, to such an extent that he becomes equally as unintelligent as he was before the experiment. Charlie is aware of, and pained by, what is happening to him as he loses his knowledge and his ability to read and write. He tries to get his old job as a janitor back, and tries to revert to normal but he cannot stand the pity from his co-workers, landlady, and Ms. Kinnian. Charlie states he plans to “go away” from New York and move to a new place. His last wish is that someone put flowers on Algernon’s grave.”

From Wikipedia

Can you guess what this does to me? Does it make you want to click on that little “X” up there in the top right? Would you rather pretend this isn’t happening?  Me too. Unfortunately, I can’t pretend.

There are those who are tired of reading about the end of this study. There are those who say I’m scaring people from participating in research. There are those who say that sharing anything but the most hopeful of stories, damages our community.

Here is the issue though…

Participating in research is already scary. As a parent, making the decision to experiment on my child for the greater good…it went against every mothering instinct in my body. And, yet, I did it. I made the choice for him, I gave over his body to science…for progress. To push fragile X research forward.

Dr. Berry-Kravis, who I love, recently said,

“Short of a science miracle (which I, Seaside and families had hoped for), we won’t get everything right the first time. We will stumble and we will fall and we have to just get right back up and be wiser from our mistakes and do it over and over again until it’s right. And every time it’s not just us that falls – it’s all of the families who are our partners. So it’s going to hurt and we feel bad that families have to go through this pain. But that is the nature of making progress in science and you must remember that without you we will not make it to the goal of developing new treatments. (We can’t ever prove it works without you) So we have to ask you to go through this process with us. It’s tiring – maybe even horrifying – to think of the persistence and resilience we will all need as partners to get through all the falls and scrapes as we eventually get over all the hurdles to the finish line!

 

from the NFXF
Call me naive, but I never truly believed that it would end like this. I thought we had to get through the double-blind portion and a brief titrating period and then we would be set. I am, clearly, a supporter of research…I asked last October, “Do you really want a cure?“

“No study participants=No data=No cure!

All the lab results or money in the world won’t get us past this.”

It was true then and it is true now. If we stop participating there will never be a cure. The community cannot stop participating. But, we should have been openly talking about this part of participating in a trial. We should be going into these trials, not with just hope filled eyes but, with practicality and realistic expectations. If I had known that this might end this way, would I have still done it?

I don’t know. I can’t know because I based my decision on things that I only thought were true.

Do I regret it? That is an entirely different question and to that I say, not for one second. I know what is inside him now. What is breaking my heart is that we are going to lose it. We are going to lose it not because it isn’t safe – if it weren’t safe there would be no question I would be banging down the clinic door telling them to get him off it right now. We aren’t losing it because it doesn’t work – if it didn’t work I would have already moved on.  It is safe and it works and we are still losing it when we were told we wouldn’t lose it. How was I to know it was a possibility if we (FX community “we”) don’t ever talk about it?

So here we have a whole bunch of families, heartbroken over this sudden loss. If we had gone into this, believing that it would end…we would not be here. I would be sharing the Flowers for Algernon summary as an argument for more research. I would be arguing for more fragile X awareness. I would be telling you that although it breaks my heart to go through this, to put him through it, that it just means we need to keep moving forward.

Instead, while all of those things are true, I’m left fighting for my child. MY CHILD and not my community. I’m left standing here saying “It’s not fair! You told me we could keep it! GIVE IT BACK!“ I’m left feeling helpless, heartbroken and abandoned by people I thought were helping us. When I hear that I just need to keep moving, keep hoping, keep participating right now…I have only one response…one finger.

Is that fair to those who are saying…but they were allowed to end the trial or not every trial is successful? Probably not.

But was it fair to paint nothing but a rosy picture and make promises that weren’t entirely true? Definitely not. Going into this with such high hopes and unrealistic expectations has broken my trust.

So please…please…please…participate in research. What I want you to learn from my heartbreak is this…

We have long suspected that there is more inside our children than we were seeing…and IT IS TRUE. There is so much more in there just waiting to break out…but it won’t happen unless we make the sacrifices. We can’t just wait, we have to take risks.

But I also want you to learn this…

It is a risk. It is one worth taking but it is a risk. Go in with your eyes open and your hopes realistic. There is so much room for hope based on what we and other families saw.

I need to rebuild that hope within myself right now. That doesn’t mean “stop” it just means…be careful with your hopes and dreams because they’re precious and the loss has been almost unbearable.

Every day…

Every day…

Melissa

Every day, he makes me laugh. A dozen times a day he says something to make me laugh and I think…I don’t want to forget this, I should blog this. Yet, I’m too busy soaking up his awesomeness…filling up my tank…just in case. Just in case…

We haven’t started titrating down yet. We may be the last…our appointment was on Friday but I had to cancel it. When people ask, and I tell them…I get this look of pity. Even my husband gently asked me what I thought was going to happen. Nothing. I get it. Nothing will stop this, nothing.

But…

It is asking too much. That we take him from school early, when all the fun end of the year stuff is happening. That Eric’s sister has to give up hours of her very little free time/time off to come and sit with Grampy. Grampy who is home from rehab, but who needs lots of attention. It was asking too much.

And now that I sit here, pondering making another appointment…it is still asking too much.

To ask me to go there and hand back the medication that has opened up the world to my boy, the medication that has taken that sparkle in his eye and brought it forth so it can be shared with the world, the medication that has enabled him to learn more easily…it is asking too damn much.

I feel so helpless and furious and sad…it’s all too much…I have a mother’s heart, one that is immeasurably strong in many ways but also so, so fragile. Asking me to break my own heart. It’s just too much.