Tinsley
When I gave birth to my daughter, Tinsley, I expected to have a perfectly normal baby. When we were told that she had Down syndrome, I
was in shock. At first, I was numb. Then, I felt such despair. This can't be happening to us. These things happen to other people. How
would this effect our family? How would it effect us financially?
How would our families deal with it? What about all the dreams I had for
her? We had a three year old son. How would it effect him?
Would we have any time for him? Would he have to defend his sister when they got
older? I just wanted to go to bed and pull the covers over my head.
Then we found out Tinsley had a heart defect that would
require surgery. Well. I thought "Let's get it over with." But oh no. we
had to wait until she grew a little more. We were told that she would probably
go into heart failure and need to be put on medication. Which she did, at three months old. It was a scary, stressful time for us. It put a
strain on our marriage.
Tinsley started physical therapy when she was three months old, occupational and speech therapy when she was six months old. We had the
therapists come to our house. My husband's insurance covered most of it.
She had the surgery when she was eight months old. What a
change! She just blossomed! She was a different child.
When she was two years old, she went to a full day preschool for speech impaired children. I had a hard time sending her off on a bus
for seven hours a day. But, it turned out to be a good decision. She
got PT, OT, and speech every day. The school offered wonderful
classes for parents. How to deal with the school system effectively, how to be an advocate for your child, etc. It was a great learning
experience.
Before I had Tinsley, I was happy to be a wallflower. I never
wanted to have attention centered on me. After Tinsley, I found
out that if I was going to be a good parent to this child, I had to change my
ways and come out of my shell. Tinsley helped with that. Everyone knows her.
She started walking and talking (somewhat) when she was about eight-teen months old. She was potty trained at about 31/2 years old.
She just loved pulling all the toilet paper off the roll when she was in the bathroom.
Throughout Tinsley's school years, she has been included in
regular classes part of the day. I think it is very important that she have
positive role models. The other kids can learn from her too.
(Acceptance, patience, etc.) Other kids making fun of her has not
been a problem. It has only happened once or twice. Tinsley handled it
before I even knew about it. I think I was more upset than she was.
Tinsley has been involved in a lot of social activities. She
was in the girl scouts for three years, she has been in many church plays,
she goes to school dances, and she has taken swimming lessons. She recently started taking Taewkondo. She, also has a part time job.
She has flown to New York by herself.
She is like any normal fourteen year old girl. She love
clothes, (not the ones I pick out), music, talking on the phone. She wants me to
drop her off at the mall to shop with her friends. I'm not ready for that.
I still get the "Down syndrome blues" every now and then,
but not often. When I look at Tinsley, I don't see my Down syndrome daughter.
I see my daughter, who just happens to have Down syndrome. Dealing with all of this has been difficult at times. But it has had
its positive aspects too. Our family has grown stronger. I am much more outgoing and accepting of people. I have learned that a sense of
humor is a wonderful thing to have. Tinsley has taught me a lot about life.
Donna
Triangle Down Syndrome Network
