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The Down Syndrome Clinic (repost)

Posted Jan 14 2010 12:00am

In honor of Kellsey's first visit to the Down Syndrome Clinic, I thought I would repost what I wrote when Kennedy went her first time. She was 3 weeks old. She's come SO far since then... and so have I.

The Down Syndrome Clinic
Originally written: June 10, 2004


Today was our first appointment at the Down Syndrome Clinic at Vanderbilt Children's Hospital. We had to be there at 7:30 this morning and we were told to expect to be there for about 4 hours. We had some idea of what to expect, but much of it was unknown. We just knew we would finally be getting some answers about our new daughter.

When we got out of the car in the parking garage, I saw a little boy in a wheelchair with no legs. His mom was pushing him towards the medical center for an appointment; I can only imagine it's been one of many for him. I wondered what happened to him, was he born this way? Was he in an accident? Is he happy?

We went up the elevators and the doors opened to a child wonderland. The walls were covered in bright paintings of animals and cartoon characters. The front desk held an array of children's toys and other pretty things to look at. Nurses bustled around the fairly empty hallway getting ready to start their day. We found the Down Syndrome Clinic and discovered more of the same: A happy office with toys for waiting children to play with, a big fish tank to keep them entertained and more bright colors everywhere. It was a fun place, an upbeat place; definitely not a place to focus on the things that are wrong.

Only one other family was in the waiting room. The baby boy, who I figured to be about 6 months old, was sitting in his car seat. He obviously had Down Syndrome as well. I wondered about his mother… how is she doing now that she's had time to process everything? Is she accepting? Is she adjusted? Does she have peace? Or is she still confused and hurt and angry that her son is not "perfect"? Does she still cry every day, mourning for the child that her son will never be? How long does it take for the pain to go away?

Before long we were called back into another room. Kennedy was weighed and measured and doted on by the staff. They put her into their smallest yellow hospital gown which enveloped her tiny body and kind of made her look like a banana. We filled out some paperwork and were left alone in the exam room. A few minutes later we were taken down the hall to get her echocardiogram done. As the nurse chit chatted along the way, I looked around. Children filled the hallway now. Many of them looked completely normal, completely healthy, while others had outward characteristics telling the reason they were there. My heart wrenched for those who were so clearly worse off than my baby, yet I received the same looks of sympathy when other parents looked at Kennedy. The irony hit me like a brick. The words I had heard so many times since Kennedy was born echoed in my mind, "The Lord will never give you more than you can handle…"

The technician was pleasant and happy. After playing with Kennedy she started the echocardiogram which is basically an ultrasound of her heart. She explained much of what she was doing and even printed off a picture for us before sending us back to our room in the clinic. Now we just had to wait for the results.

Back in our room we did not have to wait long before we got a knock on our door. The first doctor entered and the onslaught of questions began. How is she eating? How is she sleeping? Does she look around? Do you think she can hear? How are her siblings adjusting? How are YOU? What are YOUR concerns? What can we do to help YOU? Then, after oohing and ahhing over our sweet girl, one doctor would leave and minutes later the next would arrive. They answered the questions we had and even answered questions we didn't think to have. They all left business cards and lots of information and encouraged us to call them any time we had a question or concern.

Before long we had seen a nutritionist, a psychologist, a speech therapist, a physical therapist, a genetic counselor and a pediatrician. The most important person we saw though was the cardiologist. He was the man who would tell us the condition of Kennedy's heart and her immediate future. Would she need surgery? If so, would it have to be right away? How serious is this? As he introduced himself my heart started beating in my throat and my hands clenched. Silent prayer flooded my mind. "Please God, just let my baby's heart be ok." After asking another series of questions and briefly checking her out for himself, he was ready to discuss the results of her test. He explained that Kennedy has a small hole in her heart, not unlike many newborns have at birth. This is what had caused her abnormal EKG just 1 week ago. However, he was confident that the hole would close on its own and no surgery would be required. "Kennedy is in the 40% of babies with Down syndrome with no serious heart problem." With those words, relief washed over me and I sank into my chair in exhaustion. "Thank you, God!" The stress of the last few days had me wound tighter than I had thought. No heart problems… no surgery… with those results we were told she will potentially live a long, full life. It would be a different life than her sister and brother, but a happy life all the same.

After 4 ½ hours we were told we could go home. We will see them all again when Kennedy is 6 months old. At that appointment they will be able to see what milestones she has hit and what kind of help she will need for her age. Until then, she is a baby who we get to feed and play with and love.

Kennedy has Down Syndrome. It's a condition that affects her life, but it does not control her life. It does not limit what she will be able to achieve in the future. It does not define who she is. Kennedy is a beautiful, happy little girl who will one day steal her sister's toys and drive her brother crazy when he has friends over. She will go to school and play sports and have lots of friends. She will laugh when she is happy and she will cry when she is sad. She will know she is loved and cherished by everyone around her.

Will it be hard sometimes? Oh yes. Will my heart break when she comes home and tells me she was teased at school? Definitely. Will I still have days when all I want to do is cry and wonder why this happened to her? Probably. But we're going to be ok. With lots of prayer and lots of love our family is going to be just fine.

Kennedy has Down Syndrome. Down Syndrome does not have Kennedy.

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