A guest post.

The main reason my life is so sweet is that I get to share it with this man. He is an amazing dad, an amazing husband and an all around amazing person. I think you will see why Monkey and I love him so very, very much! 


I don’t sign in and post on here often, but today is a special occasion. Today is National Fragile X Awareness Day. I remember when we first found out about Monkey and fragile X syndrome I really didn’t fully accept it, nor did I know anything about it. I thought that it was something we could overcome. It was something that wouldn’t change us or our family that much. Then it set in, our life was going to be different. We were going to have to work hard to see him walk, crawl, talk. It took us so long to connect with other families who had fragile X-associated disorders touch their lives that I started to wonder what would happen to some of my dreams. What about normal accomplishment, would he ever hold a job, drive, finish school, go onto college, play a sport, go snowmobiling with me?

I still remember when Monkey first started walking, it was a huge celebration. Then he start talking and we would celebrate every new word, even if it was months between. Even now, he’s mimicking my phone calls and it just lights up my day. Every little accomplishment is a huge celebration, no matter how long it takes to get there. We continue to work hard for Monkey and push him beyond his comfort level so that he can continue to amaze us.

Is every day a breeze? Definitely not! We have struggles; we’ve had days or evenings where we can’t go to the children’s museum, aquarium, amusement park, zoo, etc. Or we get there and spend so little time inside that our parking is free. We’ve had days where it’s a battle to get out of the house, nights of little to no sleep, challenges with the school district over placement and services. Do I wish live were easier, sure, but then there would just be something else. Umma recently said, “He has fragile X syndrome, but it does not have him!” and that is so true.

Monkey is an amazing child and part of it is because of fragile X syndrome. He has changed me. He has given me the drive to help change the world, help raise awareness for Fragile X and make sure there are plenty of opportunities for all of those affected to live full, satisfying and productive lives. I am lucky enough to have a job which allows me to help raise awareness for all of the fragile X-associated disorders. We are also a part of a larger Fragile X Family and have many amazing friends. We now know that that all of those normal accomplishments can be reached and we will work to get there!

What I want you to know about Fragile X Syndrome.

Tomorrow, July 22nd, is Fragile X Awareness Day. I thought I’d take a minute to share what I wish the general public knew about Fragile X Syndrome.

  1. It exists.
  2. It may be in your family.
  3. You won’t know unless you’re tested.
  4. If you are planning to have a baby and you are offered genetic testing, you should ask about it. It isn’t a test a GYN will typically order.

I have a couple more things to add for those of you related to me on my maternal side (Coles, Gerrishes)

  1. It is in your family.
  2. There are 2 boys with the full mutation and at least 6 carriers spread through 5 generations.
  3. If your grandfather or grandmother was diagnosed with Parkinson’s (and I know some of them were) there’s a chance that it is (or was) Fragile X Associated Tremor/Ataxia Syndrome or FXTAS and you should be tested.
  4. You should be tested even if your kids don’t show any symptoms.
  5. You don’t want to wait until it shows up in your grandkids or great grandkids, it will rip your heart out.
  6. I can help you walk through the family tree if you are still not sure.
  7. I love you all 🙂


Visit the National Fragile X Foundation for more information.

Almost a month?? *blush*

I’ve been reading blogs for a long time. I started with design blogs and then added mommy blogs, special needs blogs, fragile x blogs and adoption blogs…you can see the evolution of the last 7+ years of my life in my blog feed. Inevitably some bloggers begin posting erratically and then disappear. Sometimes they’ll come back months down the line to explain. Sometimes the blog just goes offline and you never know what happened. Either way it drives me nutty. I mean, honestly, how hard is it to cough up a few words once or twice a week??

I’m now getting a taste of just how hard that really can be. I’d love to explain what’s going on but I’m mystified. I can’t even bring myself to look at this blog right now. Duhdee keeps saying that it’s my new (ZOMG PINK) iPad but I could blog on it, there is an app for that. I just don’t. I don’t want to stop blogging, I get so much from it…from you all…hopefully this is a passing phase and it becomes fun again. Soon **pretty please?**

I feel badly for leaving so much hanging out there so let us have a quick update type post…

  1. Niece = lucky = mostly healed
  2. IEP = pure misery in written form = probably going to reject the re-write and exercise stay put (unless the school has had an epiphany in the last week *insert hysterical laughter and a coughing fit*…honestly I’m not sure which part of “We won’t ever agree to that.” they aren’t understanding)
  3. Vacation = pure bliss = a week in Maine with my parents. Auntie let me sleep in several mornings and Monkey went out on the boat with Grampa and Duhdee several times giving me some total “Me” time.

Good enough? Good.

I also feel badly for abandoning this blog even though I can’t stand to look at it (conflicted much?) so let us have a cute Monkey story to make everyone forgive my rudeness…

Monkey has begun to pretend to call people on my phone every morning in lieu of playing Angry Birds. His favorite place to “call” is the local pizza place an order for pick up for two large cheese pizzas. SO cute. Even cuter is when he pretends he’s talking about *ME* It melts my heart when I hear him saying “Pick up Money? Bye sweetheart!” Duhdee didn’t even realize that he calls me sweetheart until Monkey started mimicking him, lol.

OH! And how about I say something nice about school too or would that be going too far? I’ll risk it.

Today, Monkey’s summer school teacher told us that Monkey is the most “intriguing” student in her class. She said she can see that there is just so *MUCH* in there that she needs to figure out how to get out of him. It’s awfully nice to hear someone at the school say precisely what we’ve always said.


At the school meeting we asked about sight word programs vs. phonics programs and the school administrator said they had Edmark and that we could switch it in the IEP. The next day (Friday) we told the teacher that we were going to change it in the IEP and asked if she could get him set up over the summer and by the next Tuesday she had it set up with the reading specialist! Monkey is working on it 3 days a week. Color me amazed.

Too bad she can’t be his teacher next year 🙁