Tuesday, May 13, 2008

Today I decided it was time to share my family's life with our son, Angelo. Angelo was born on 02/16/99 with a rare genetic disorder called Williams Syndrome. Williams syndrome is a rare genetic condition (estimated to occur in 1/7,500 births) which causes medical and developmental problems.

You can look up this condition at http://www.williams-syndrome.org/ for further information.

I knew the moment he was born that there was a problem. Everyone had that "look" on their face. When they said 5lbs 13.8 ounces, I thought "Oh, no that can't be right" I have the big fat babies. My first son, Andrew was 9lbs 11 oz and Jeno followed in the same weight pattern. Jeno at 4 mos was 22lbs! So you can understand the surprise at this little peanut with a full head of white/blond hair. It stuck up and he looked like a little chick. That was the day our life changed.

Angelo's health has always been relatively good. We has the ear tubes (6 times) and he has pulmonary stenosis. Each year we wait for the heart operation but each year no change (Thank you, God)! Angelo is now 9 years old but is still around the kindergarten stage. His emotions change with the wind. He has what they call "emotional letdown". Does not make sense since he has no emotional letdown. He is either up or down. No in between. He has not started medication yet but soon to be evaluated. He has also been diagnosed with PDD, ADHD, OCD, SEVERE ANXIETY, IQ of 60 and too many others to list. I will get to each problem as they occur.

Angelo has changed the lives in our family and everyone he touches. He has a true love of life. He can see amazement in the beauty of a sunset (he thinks God makes them just for him) and no one is a stranger. He will say "hi "and smile at everyone. He is obsessed with Tornadoes and Trains. He can tell you the tech terms for anything he obsess with but still cannot write his name. He can get on the computer and find his web-sites but still cannot tie his shoes (thank goodness for Velcro) It amazes me on the vocabulary he uses. He uses words that I can hardly pronounce! and he knows what they mean. But, he still needs me to help him in the bathroom and with daily hygiene. It seems with Angelo, we have around 5 kids in one. All a different age group(age 4-9).

Someone once asked me if he could be healed of this genetic disorder would I want God to do this? Yes, most definitely! But, I also know that Angelo has a purpose here on earth. Would I want him to have less anxiety? Yes, but I would never want him to loose the excitement of life. The pure joy I see on his face everyday. The unconditional love he has for everyone. I know that as his Mother, he was given to me as a gift from God. God has in trusted him (and my other children) to me to protect and teach him the right path to follow. Funny thing...I feel that Angelo has taught my husband and I more lessons on life than I can count. He is my "Special Little Angel" here on earth.