It’s time to make Eric cry again.

It’s time to make Eric cry again.

It’s getting a little heavy here. There are a lot of strong emotions and one of my most favorite coping mechanisms, when I start getting dragged down, is PINTEREST! The problem is when I start spending time on PINTEREST, I start getting ideas.

If you recall the nightmare that was Caleb’s room redesign then you know, you know, why me getting ideas is bad. But this time it will be different! This time we really are only talking 2 gallons of paint. Ahem. You can stop laughing now!

All I really need to do is narrow down my ideas a bit…

OK, maybe a lot…but, in my defense, I do have two different sets of stairs to do…

Yeah, he’s so going to cry…but I have to say, in the end, my ideas do turn out stunningly so it will be totally worth it. At least it was last time, right?

The Perfect Storm.

No, this isn’t about Sandy. It’s also not about that movie I never did get around to seeing. This is about grief.

A very long time ago, I had another blog. A secret blog. *gasp* I know! Another amazing, inspiring blog and I have kept it from the world? Shocking and selfish. Or, maybe, it was not either of those things. Maybe it was just stuff I wanted to share with my parents and in-laws. The world will never know.

Yesterday I was discussing grief with friends, specifically how we grieve as parents of children with fragile X. How it’s a vicious cycle that keeps a grip on us from the day we are diagnosed until…well, I’m not really sure when. All I know is that I was knocked off my feet the day I found out that Caleb had fragile X and, even though I keep standing back up, it still has the power to send me to the ground over and over again. Just because it’s easier for me to stand back up doesn’t mean that the pain is any less. It still hurts.

Separately from that discussion I decided I wanted to find some pictures of Caleb’s hair, he has spectacular hair. I love every single curl on that head and it makes my heart happy to look at him. So I pulled up that old blog to find pictures of him as a baby and I found something else. I found me. I found the me I was before fragile X. I found the mom I was, the one I should be. The one I would be if I’d never heard of fragile X syndrome. If the right X had passed between us.

I wrote this 14 days before Caleb arrived.

Waiting for Caleb

Eric and I were delighted to announce to all of our friends and family in November 2003 that we were expecting our first child. We waited until I was nearly 12 weeks pregnant before we made the announcement. I had taken a picture of my positive pregnancy test for the little one’s baby book. When the time came to tell my Mom and Dad we simply handed a copy of the picture to Mom. Mom seemed surprised but hid it very well, she then handed the picture to Dad. He couldn’t quite make out the writing and finally Mom had to tell him what he was looking at. They were both very happy for us, as we knew they would be.

When I was 18 weeks along we had a routine ultrasound. At first the Dr. had a little trouble getting the baby to cooperate, he appeared to be as camera shy as I am, lol. Eventually, after some prodding, the Dr. was able to get a few good profile shots. After the Dr. took a few measurements of the baby he decided to have a look around. He asked if we wanted to know the sex of the baby, obviously, we said yes. He zoomed way in on the baby leaving no doubt that he was in fact a boy, lol.

The ultrasound was an amazing, awe inspiring experience. Seeing our little guy’s hands and feet and watching him move brought tears to our eyes. But true to form we found some humor in the situation as well. I commented on how cute he is and Eric’s responded, “Yep, he’s taking after me already.”

He’s so modest. By the end of the ultrasound Bullet was pretty upset about the whole experience and he brought his little fists up by his face so he looked like a little boxer. I made the obvious observation, “Awwww, look, he’s pissed off! He takes after me too!”

We both enjoyed the pregnancy so much, the only reason we won’t be sorry it ended is because we’ll have a perfect, little boy to love and spoil.

It makes me so unbearably sad to think about her…to think about that person who expected the whole world to sparkle simply because it always had before.

There are some positives, though, starting with this one…

A really, really, ridiculously cute positive.

Nothing to see here.

I used up my very last brain cell yesterday coming up with a plan for C’s weekend story to share. Hurricane cleanup and preparation, fun!

Today we’re hanging out inside where it’s dry, listening to the wind whipping through the trees outside while we wait for Hurricane Sandy to arrive. Caleb always finds ways to amuse himself, we started with tickles, then TV, then lunch, then computer, then marbles and now a little more computer.

What is a Money to do when her little man is becoming so self-sufficient? How about look through lots of old pictures looking for photos of the little man’s epic curls? OK! I’m easily amused, clearly, but come on…how can anyone resist this?

Way too much pressure!

One of the academic areas that Caleb is included is “Writing Workshop.” This is when the kids all spend time…writing. Caleb doesn’t write. His fine motor skills are terrible so the only thing he can write semi-legibly is his name1 and he’s still working on learning words…stringing sentences together isn’t really happening yet. With those considerations in mind, this would seem like a terrible time to have him in the room working.

This is where having a great teacher comes in. For the last year we have been emailing pictures from Caleb’s weekend to his teacher with a quick note. The idea was that they could then ask him about his weekend and/or help him tell the other kids about his weekend. For me it was all about social skills and weaving him into the fabric of the classroom. Caleb’s new teacher, however, saw much more potential here. She is now printing the pictures out as a full page each and binding them together with blank paper. Caleb is sitting in writing workshop writing stories about things he has done! It’s an absolutely brilliant idea and a perfect example of why we love her.

There is one slight problem though…he’s out of pictures for stories! I haven’t been able to keep up with them! I need to figure out what I can send along tomorrow night so he can continue on Monday. I’m at a loss. I’m pretty sure I can’t win here…if I scramble and come up with something, Hurricane Sandy will result in a school closure and if I fail, the Hurricane will completely miss us and he will be story-less for Monday.

I really thought I was beyond having to stress out over a homework assignment! Apparently not, it’s just one more perk of parenting my little Monkey!

  1. and we’ve been working on that for ages []

That word.

That word is back in the news. Periodically someone famous lets it slip in public, gets skewered (rightfully) by angry families, friends and self advocates, apologizes and then we the rest of the world moves on until the next time.

We…we don’t get to move on because, while the rest of you folks feel better if there was an apology from the most recent famous offender, we still hear it. Almost every day it seems at times. From a high school classmate on Facebook, from a co-worker, from a family member, from other parents, from random people in the aisles at Target, from ER admissions workers, from those stupid “joke” pictures on Pinterest because obviously it’s so funny to make fun of people with intellectual disabilities.

It is literally everywhere we turn, I cannot tell you how many times I’ve been watching television and had it just thrown in my face….hahahaha…cut out my heart. AND, for those apologists who also seem to pop up every time there is another high profile usage of it, we aren’t being oversensitive…there is no such thing as oversensitive when it comes to people making fun of your child or another child like him.

I wrote this note to the high school aged friends of some of my favorite people nearly two years ago because it finally dawned on me that while “adults” who are using this word may be a lost cause (though, I really, really hope not!) the next generation can do so much better…if only they stop and think.

Don’t mind me; I’ve got something I’d like to say to your friends…

I’m Melissa, Christina/Jenica/Kaitlyn/Kaitlin/Kevin/Maranda/Samantha’s friend/cousin/aunt/aunt/aunt/friend/aunt, and I have a son who is almost 7 years old. His name is Caleb and he is probably the cutest kid to ever walk this earth. OK, maybe not, but he’s my ONLY child and I’m required by law to think it just like your parents’ think this of you (even when you’re jerks, btw.) Caleb is a sweet, loving little boy and he happens to have Fragile X Syndrome.

You probably haven’t heard of it before, lots of people haven’t even though Fragile X Syndrome is the most common cause of inherited mental impairment and the most common known genetic cause of autism. (If you ever have a science project to do you should check it out, it’s a great topic, http://www.fragilex.org is a good place to start.)

Anyway, besides being extremely cute, incredibly sweet and having Fragile X Syndrome, Caleb also has intellectual disabilities. Did you know that by casually using the word “retard(ed)” to refer to an action as less than ideal you are making someone with an intellectual disability feel less than human? Often, the word is also used casually to denote behavior that is clumsy, stupid and even hopeless. The word conjures up a painful stereotype of people with intellectual and developmental disabilities. It hurts. Even if you don’t mean it that way.

I’m asking each of you to take a stand and raise awareness of the dehumanizing and hurtful effects of the words “retard” or “retarded” and encourage others to think before they speak. Please take the pledge and join the R-Word campaign at http://www.r-word.org/Default.aspx.

I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.

That is all and thanks 🙂

The fact that Jenica tracked this note down this week and shared it with her Facebook friends now that she is in college gives me hope because the next generation is already doing better.

Oh, the Places You’ll Go!

Oh, the Places You’ll Go!
by Dr. Seuss

You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they’re darked.
A place you could sprain both your elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?

And IF you go in, should you turn left or right…
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it’s not, I’m afraid you will find,
for a mind-maker-upper to make up his mind.

You can get so confused
that you’ll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place…

 

Today, my sweet boy, after 6 1/2 years…we finally leave that most useless of places. The place where we could do nothing but hope and wish and dream. Today, we are off on a grand adventure and I’m so honored to be on it with you and your Daddy.









I really want to be happy.

I want to write a lighthearted, happy post about my little Monkey. An upbeat post about Saturday’s awesome fragile X conference in Connecticut would do in a pinch but…I don’t have either in me. Not today.

Yesterday, I was strong, I was upbeat, I was positive because that’s who I am when Monkey needs me. I was calm as I explained to yet another doctor how to best examine and treat my little guy. I ate celebratory donuts. I built a fort out of sheets and blankets to make sitting still a little easier for my bouncy boy.

Today, the memories of his tears, of our frustrated attempts to find out what hurt, of his uninjured leg banging against the couch to get the sensory input his too sore little body desperately needed…have left me drained and numb.

It’s been a very long time since I’ve said, “I hate fragile X.” but it’s back, rattling around in my head. It’s been a very long time since, “How are you?” resulted in tears, but my eyes burn with them today.

Today, my heart is just a little raw from knowing how helpless I am, and will continue to be, at times as we live this life with fragile X.

Tomorrow, I’ll be better.

The bags are packed!

This weekend Caleb and the dogs are going to Maine to spend time with my mom, dad and sister. It does not matter how stressed I may be or how exhausted I may be or even how excited I may be about getting a break…I still hate it. I said good-bye to my little Monkey this morning at school drop off and I won’t see him until Sunday afternoon when we pick him up. Already I miss him like crazy and I’m still 2 1/2 hours from the normal pick up time. I am just such a sucker for my little man, I can’t get enough even when I’ve had it right up to here. Strange how that works.

Later, Eric will pick me up and we’ll truck on down to Connecticut, with our friend Christy, for tomorrow’s fragile X conference. We’ll have one night to luxuriate in the cush king-sized bed with all the ridiculously comfy down pillows and comforter. *ahhh* AND we get to sleep in! Right? That’s the whole point of driving down the night before. Woohoo!!

Except…we’ll also be at the LINKS table and we need to set up the merchandise so it looks like we won’t even make it to six-firty tomorrow morning. *sigh*

If you’re coming to the conference, please take pity on me and stop to say hi! Also, bring your credit cards because we’re going to have all the awesome shirts, magnets, stickers, water bottles, travel mugs and hats that we sold in Miami with us!! I will feel WAY better about a five-firty wake up if I could sell a ton of stuff to fund the NFXF LINKS Program! We will ALSO be bringing some shirts we didn’t have in Miami…we’ll have some new gorgeous pink ladies cut shirts…even PINKER than the Miami version. They’re awesome…and we won’t have a lot.

See you there!

If not there, we are still going to be setting up the online store…we’re just working out a few little bugs!