Caleb often uses scripts from scenes in TV shows and movies that he loves to express the emotion he is feeling.  It’s actually the only reliable way we have for knowing how he is feeling on the inside. I find it pretty amazing when he can identify the emotion and find just the right scene to express himself even though he lacks the words to communicate it.

This morning he experienced a tragedy and, since I’m an awful mother, I recorded the aftermath…

That is some pretty raw emotion…a deep emotional pain, isn’t it? Want to know what caused it?

He asked for Fruit Loops for breakfast and I got him a bowl of Fruit Loops for breakfast. Then I insisted he eat them when he decided, after the fact, that he really wanted yogurt, not Fruit Loops.

I promised yogurt after he finished the Fruit Loops to no avail. He went to his computer and pulled up this video to share his deep sadness over my total insensitivity to his pain. I laughed. Sorry but I found the reaction a little bit over the top.

And then…


Broken and stressed…

Broken and stressed…

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?

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

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.

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.