Our Story...

Hello all,

   So here's a little of our back-story just to get you up-to-date. My husband James and I have been together for almost 6 years. During those years we have been through more trials and tribulations that we ever thought we were going to. We have one son, who was diagnosed with Fragile X syndrome when he was about a year and a half old (he'll be four this summer), and we have a new little bundle of joy, a daughter, who is four months old.

   Our son's diagnosis came as a huge surprise, but then again, I guess it does for most families. My son was around six months old when we realized that he was developing at a slower rate than other kids his age. I understand that all kids develope at a different rate, and kids will do things when they're ready, on the their own schedule, but as a mom, you just know when something's not right. My fears were confirmed when I went into his room one day (he was around a year old) and his vocabulary of around fifty words, all of a sudden went down to nothing. He just didn't talk. Nothing.

  After visits to our family doctor and a referal to a wonderful pediatrician, Jonathan had his blood tested for Fragile X (something I had never heard of before). After learning that the blood work had come back positive for Fragile X, and that I had been the one to give it to him, I went home and the first thing I did was google Fragile X. (Where would we be without google?)

   I came across this WONDERFUL website, with oodles and oodles of information, everything I would ever want to know about this disorder. That was the National Fragile X Foundation. ( www.fragilex.org ) They sent me pamplets, and newsletters, and all kinds of information and referals.

   We were also told about this wonderful facility that was an early intervention program for children with special needs. They set him up with a speach pathologist, physical therapist, and occupational therapist.

  We go through one day at a time, some are good, some aren't as good, but we get through. My family has proven to be stronger than I ever imagined they would have to be.

Day one...

SATURDAY - April 2, 2011

Well, today was quite a day to decide to write a blog...

Let me start off by saying that earlier in the week, I was informed of a Fragile X support group that met very close to us, the first Saturday of every month. Not wanting to wait until next month, we scrambled to try to find someone to watch the kids while we hopped the boarder to Royal Oak. After going through all the normal related avenues, we decided to call our sitter. (She's my son's Sunday school teacher but she's going to college a couple hours north of where we live, and she doesn't always come home on the weekends.) Thankfully, after giving her a call she was coming home, and would be delighted to come watch both of our children. (YAY).

The meeting was wonderful. It was so nice to be able to meet twenty or so other people going through the exact same things that we were going through. It was an experience like no other. I can't wait to get more involved. So there we are... sitting in the middle, and enjoying the conversation, when my husband leans over and shows me his cell phone and asks me if it's our sitter's cell phone. It was.

She was calling to inform us that the fire department was currently airing out our house because our son had thrown some plastic in the oven and turned it on and there was smoke in the house. Everything was fine, but the fire department wanted to speak to one of the home owners to let us know that our babysitter did everything right and that we were lucky to have a sitter like her (which we already knew).

So needless to say, my stomach was in knots until we finally arrived home, but everything was fine, and our sitter even said that she would be willing to come back.

One day at a time...