I'm drinking tea today, rather than coffee. Shocked? Me too!
I wasn't too sure about this whole blogging thing. Until yesterday when I had somebody mention she couldn't wait to read my next post. Everybody second guesses themselves, so having that response to my blog, my thoughts typed up and put out there for the world to read, was very encouraging. Thank you, you know who you are! :)
With my last entry, we had just been given the life-changing news. Our son tested positive for Fragile X Syndrome. So we have the answer we've been looking for. Now what?
Well now we have to figure out what this new, foreign title even means. Fragile X Syndrome. First thing I did was google it. Then I thought no, nothing good ever comes from googling anything medical. I didn't look at any of the sites listed. Instead, I went to The National Fragile X Foundation's website, which was recommended by one of Logan's therapists. Here is what I learned:
Fragile X syndrome is the most common inherited cause of mental impairment. The syndrome occurs in approximately 1 in 3600 males and 1 in 4000 to 6000 females.
Impact on males
The majority of males with fragile X syndrome will have a significant intellectual disability. The spectrum ranges from learning disabilities to severe mental retardation and autism.*
Basically, fragile x is a mental and physical impairment. This information was obviously very hard to swallow. We had a meeting with the doctor who had originally ordered the test for this, and he explained as much as he could, but we could tell he didn't know THAT much about this syndrome. He referred us to the fragile x clinic, which had a waiting list of 3 months for appointments. Great. *sarcastic eye roll*
In the meantime, I was turning to family and friends to help me adjust to this news that I would have a "special" child that may need help his whole life. He will most likely be in special education in school, and will be in therapy up until that point. This wasn't just a temporary little "push" that he needed after all. It was very, very hard for me and Michael to accept. We decided that the best way to accept this was to arm ourselves with knowledge and be prepared for whatever the future may hold.
I received something from my sister, who was trying to help me see the positive side to all of this news. I have gone back and read this several times throughout this past year, and everytime it puts me back on track. I don't need to sit and think about the things we'll be missing out on, instead I can dream about all the things we will get to experience with our son. I am hoping this will help somebody else as much as it helps me:
* Welcome to Holland *I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Emily Perl Kingsley 1987
I will end this entry on that note, and I'm hoping to be able to catch this blog up to be real time. Every day is still a new experience, and we are still constantly learning about this brand new (to us) syndrome and lifestyle.