Tuesday was a big day for our family. Bodie started pre-school, and loved it! And we got some test results that forever changed our lives.
While a lot is still up in the air, we learned that Rhys has an abnormality on chromosome 15. To what extent, we are not sure. He went for some more blood work, and we will know more in two weeks. Everything is presenting like
Angelman Syndrome, a nero-genetic syndrome. Oh, the waiting. Punch me in the stomach and then wait for two weeks.
So while we wait, we have so many questions, as do you. First I want to say thank you to all our friends and family for the love and support we have been given. We are beyond lucky to have you in our lives. Rhys is lucky to have you, too.
As we take all of this in, we are mourning the life that we
thought we would have. At the same time, we are learning to celebrate what we have been given...the happiest little man! The best I can describe is it feels like...
When you find out your going to have a baby it's like planning a vacation trip-- to Italy. You buy a bunch of guide-books and make your wonderful plans. You know where you want to go and what you want to see. Every thing is planned out in your head.
The Coliseum, the Michelangelo, David, the gondolas in Venice. You 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? We signed up for Italy. We are supposed to be in Italy! All our life we've dreamed of going to Italy". But there's been a change in 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 place full of pestilence, famine and disease. It's just a different place.
So you go out and buy new guide books. And you will learn a whole new language. And you will meet a whole new group of people you never would have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you have been there for a while and you catch your breath, you look around, and you begin to notice that Holland has tulips, Holland even has Rembrandt's.
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 we were supposed to go. That's what we had planned".
And the loss of that will never, ever go away, because the loss of that dream is a significant loss.
But we WILL NOT spend our life mourning the fact that we didn't get to Italy, or we may never be free to enjoy the very special, the very lovely things about Holland.
We will figure this out, we always do. Please don't feel sorry for us, and don't treat Rhys any different. He has a great team of occupational, physical and soon speech therapists to help him. As we know more, so will you. It may be a day or two later, but I will update. I am determined for him to beat the odds, and prove that miracles do happen...he's a BRONCO after all!