We were on our weekly visit to the Emergency Room. This time it was for pus-filled bumps all over Joey's lower half (diagnosis- Staph Infection - yuck). The doctor came in and asked Tommy who Joey was. He said, "That's Joey. He's my brother." I looked at Tom. Tom looked at me and my eyes filled with tears while my heart filled with joy. Just the way he said it spoke volumes. The possession. The knowledge of their bond. I was thrilled.
Today I'm writing 21 Things We Love About Joey in honor of his incredible 21st chromosome. That extra chromosome that is responsible for Joey's Down syndrome diagnosis.
If you are like me, you may have little understanding of what Down syndrome means. Before Joey was diagnosed I had almost no true knowledge of what Down syndrome is. We have spent the last 1 1/2 years trying to understand as much as possible about it. (The following information is mostly derived from a book called Babies with Down Syndrome). Basically, Down syndrome is a genetic condition that is the result of the presence of one extra chromosome in some or all of Joey's millions of cells. Instead of having two copies of the 21st chromosome, Joey has three copies. Thus, he has 47 chromosomes in each of his cells instead of the usual 46 chromosomes you or I have.
Chromosomes and the genetic material they carry play a huge role in determining each individual's characteristics. Joey's extra chromosome affects him in that his appearance is slightly different from other kid's. People who have Down syndrome often have some degree of intellectual disability. The important thing to remember is that the various health problems vary tremendously from child to child-- just like the rest of us. In general, children with Down syndrome are usually smaller and their physical and mental development may be slower than kids who do not have Down syndrome.
A "syndrome" refers to a set of signs and symptoms that tend to occur together and which reflect the presence of a particular disorder or an increased chance of developing a particular disorder. Down syndrome is called a "syndrome" because it produces a recognizable pattern of differences in different areas of the body. Sometimes the bridge of the nose might be slightly flattened (super cute!). Sometimes the eyes may be almond shaped (beautiful!). Sometimes there may be a wide gap between the first and second toe (sandal toes--adorable!). Not everyone who has Down syndrome has exactly the same combination of differences. The differences occur together often enough to be considered characteristic of Down syndrome.
The main thing to remember about Down syndrome is that just like other children, kids who have Down syndrome are unique individuals with their own personalities, their own talents and their own unique point of view. Further--they are more similar to their siblings and others in the community than they are different. More alike than different.
Here are 21 Things We Love About Joey:
1. He gives incredible kisses with his full mouth.
2. His entire face lights up when he smiles--and he has matching, identical dimples.
3. He works really, really hard at every single therapy session.
4. Joey is obsessed with his big brother Tommy and watches every single move Tommy makes.
5. Joey is obsessed with our dog Hershey and will dive for him any chance he gets.
6. He flirts with and charms every therapist, nurse and doctor he meets.
7. He rocked open heart surgery and was out of the hospital a week faster than any of us expected.
8. Sometimes his hair looks Billy Idol blonde. Sometimes it looks Strawberry Shortcake red. It's always sticking up somewhere.
9. He LOVES his bottles and will feed himself. He is very food motivated and grabs at any food we are holding.
10. Joey does a fake cough to get our attention.
11. The minute he gets in the bathtub he immediately makes a pee-pee fountain that I have to make sure doesn't shoot him in the eyes.
12. He's been defying odds since before he was born.
13. Kids everywhere are drawn to Joey.
14. He just started clapping and waving in the past few weeks and today for the FIRST time- he laughed out loud!
15. If you don't feed him fast enough he will stick his bottom lip out really, really far and start crying.
16. He is incredibly cuddly and squeezable.
17. When he gets excited his entire body tenses up and he puts his hands straight out to the side and he shakes with excitement.
18. He tries to bite our fingers with his six teeth and smiles when we tell him "No no".
19. I love his nighttime bottle when we sit in his big rocking chair and read books and cuddle--it's truly the best way to end the day.
20. He is sitting up on his own and you can see the desire in his eyes to crawl.
21. Joey's life makes our lives meaningful, joyful and wonderful. We are forever changed for the better by this precious little miracle child.