We would like you to meet Michael, born June 18, 1971. Mike was born with a rare syndrome called Cornelia de Lange Syndrome or CdLS for short. Individuals born with CdLS all resemble each other with common characteristics which include, low birthweight, delayed growth and small stature. Facial features include thin eyebrows which meet in the middle, long eyelashes, short upturned nose, and thin downturned lips. They also have excessive body hair, small hands and feet and incurved fifth fingers. There could be limb abnormalities including missing fingers, hands or forearms. There is usually mental retardation ranging from mild to profound.
Now, imagine the excitement and joy with the anticipation of our second child coming!! Not knowing whether its a boy or a girl and not really caring as long as we had a healthy baby. A boy would be great; we had a 2 year old son and they could grow up together and be buddies, playing ball, etc. A girl would be nice too; frilly dresses and dolls!! Imagine the grief, heartache, anger and frustration we felt learning we had a less than "perfect" baby. The first few months were pure hell - not having a diagnosis until Mike was nearly 3 months old. Now having a name of the syndrome, CdLS, what can we expect?
We are a family of deep faith but in the early days all we kept asking is "Why God?", "What have we done to deserve this?", "Why Us?". We will never be a "normal" family again and what's in store for us in the next 20 years?
After the shock wore off, it didn't take long to fall totally in love with this innocent baby. Not sure if it was his first smile, the first time he rolled over but he did make progress. Progress that the medical professionals told us not to expect. They painted a very grim picture and told us not to expect much. One doctor even informed us that the life expectancy for "these kind of patients" was no more than 18 years. Mike being a determined little boy proved so many doctors wrong. He walked,talked, fed himself and is potty trained; all contrary to what we were told. His progress was slow but with every achievement it was another step up the ladder of progress. In our eyes Mike is perfect!!!!!!
We would get plenty of stares and questions because he was so small; 4 lbs 14 oz at birth and 8 lbs at 1 year old. It didn't take us long to see the world in a whole new way. It opened our eyes to prejudice, ignorance and cruelty but it also taught us to educate, love unconditionally and accept Mike for who he is and what he is --- truly an angel and a gift from God.
Mickey Mouse images © Disney
This CdLS Web Ring site is owned by Mike's Mom. Want to join the CdLS Web Ring? |
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