We came home from the hospital on December 24th, 2001. Everything was fine at first. Then she started throwing up after we fed her. We kept telling her doctor about it but she didn't think it was a problem. At four months old Sara had not gained much weight at all and her doctor realized she was lactose intolerant.
At six months old, we thought something might be wrong. She wasn't trying to sit up, and never put weight on her legs. As the weeks went by we decided to take her to some specialists. Sara had stopped rolling over. We took her to many doctors who did lots of tests on her. One doctor even took 13 vials of blood from her. We were sent to a genetic doctor who finally found out what she had. We took Sara to him and told him her symptoms, and he immediately said it sounded like Rett Syndrome. A month after Sara turned two, we had the test results that confirmed Rett Syndrome.
Our family really took it hard and I still have a hard time sometimes. Since Saras' diagnosis, she now has six doctors and recieves physical and occupational therapy every week.
Like most girls who have Rett Syndrome, Sara is unable to talk and probably never will. She used to say a few words but lost that ability. She can sit up by herself for about a minute unassisted. Sara does not walk or stand on her own. She does not crawl. She never has. She uses a wheelchair. She is not able to feed herself, so I feed her and chop her food up very fine for her. She has a great appetite! She gets tired very easily, the least little bit of exertion wears her out, as well as her seizures. Rett Syndrome can also cause Scoliosis, reflux, constipation and poor weight gain.
There is no cure for Rett Syndrome yet. There are many scientific studies going on and a there have been a few breakthroughs in learning about it. If you would like to help research to find a cure for Rett, you can go to www.rsrf.org and donate. Every little bit helps. Thank you!
You are my heart, my love, my sunshine. Every morning I am excited to get to spend another day with you. Every night, I hate to put you to bed because you feel so good in my arms. Your smiles are beautiful, they melt my heart, your giggles are the sweetest sound I've ever heard. You talk to me with your eyes, so pretty and blue. Your kisses are the sweetest gift. I love how your little hands pull my hair, pull my nose, and pat me when I hold you.
I wish that I could give you my legs so that you can walk, my voice so that you can talk, and my hands so that you can play. I feel so sad for you sometimes, but I know that this is the way you were meant to be. God gave you to me, because he knew I needed someone to love and spoil, He knew you would need lots of extra love.
I have loved you from the moment I knew you were in my belly, and I will love you, pet you, spoil you, take care of you forever. You have my heart in the palm of your hand.
Love always,
Mommy
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 pestilience, 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 tulips and 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'll 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, very lovely things... about Holland.
-Emily Pearl Kingsley
