It was 1961 and my husband Dick and I were looking forward to the birth of our second child . We didn't much care what it was just as long as it was healthy. This baby would join our 5 year old son Rick and there was no one more excited then our Rick. He would have someone to share his room and someone to play with and do all the things brothers do with each other.
Dan made his appearance on March, 15, 1961. He was a beautiful baby and oh how happy we all were.
All you mothers know about what I will say next, but when Danny was just a wee little baby I noticed how when I was holding him or bathing him or whatever his head would just go down like he had no control of it or his eyes would roll. I knew this was not right I just knew something must be the matter. I think not long after Dick noticed it too. For a long time neither of us would say anything as then it would mean ours fears were right. The doctor just kept saying he was a healthy little boy and I sure didn't know more then the doctor. But, now as I look back, yes I did know more then the doctor-- I was a mother and I had a mothers intuition. Always listen to that..God gave it to us and we should always listen to it. I also noticed that his urine smelled strange, very strong and musty smelling (A sign of PKU that we didn't know about) and his urine turned his diaper pink. I was young and although I knew my other son never had this I just thought all babies are different.
I could make a very long story on the years since 1961..like how a specialist came in from a big city near our home and told us to go home and love Dan because there was nothing wrong with him and he was a perfectly healthy baby--- the hard times Dick and I had and how we could have split up but how it just made our marriage stronger--about when we finally got the RIGHT diagnosis--how I had to go through a lot of this on my own because Dick had to work three jobs to pay for Dan’s meds, but the hardest thing of all was we had to accept the fact that our beautiful baby wasn't perfect.
They finally diagnosed Dan as having phenylketonuria which is a long name for PKU. Pku happens in about one in every 10,000 births. It is an inherited disease which both parents have to have the gene. Put very short it is where the body can not break down the essential amino acid, phenylalanine which is found in almost all foods that contain protein and this leads to a buildup of phenylalanine which in turn can damage the brain among other things. They found Dan's pku when he was 5 years old. At that time it became mandatory for New York state to test every newborn for pku. Up until that time they did a urine test and it wasn't always accurate , then they came up with a blood test that was accurate. If they caught it they put the newborn on a special diet right at birth. Let me say here that there are different degrees of PKU and Dan's was severe.Dan is retarded and doesn't walk, talk and is unable to take care of himself. He lives in a home about 5 miles from our home where he has nurses 24 hours so we see him a lot and have a big say in what goes on to make his life as full as possible.
Well, that is Dans story except to say we would not change Dan in any way. He is our very special young man. We still don't know why God gave us Dan and I don't ask why any more as we may never know the answer except maybe it was so we could advocate for the handicapped or maybe God thought we could handle it--but either way we wouldn't trade him for the world and we just go day by day as far as our Dan is concerned.
Let me also add here that in 1966 we had a baby girl named Kimberly Ann and boy was she welcomed. We had her tested until the doctor said enough is enough. We also want to add that there has not been any more babies born with pku in either of our families since Dan thank the Lord.
As my children were born, I wanted them to be perfect. When they were babies, I wanted them to smile And be content playing with their toys.
I wanted them to be happy And to laugh continually In stead of crying and being demanding. I wanted them to see the beautiful side of life.
As they grew older, I wanted them to be giving instead of selfish. I wanted them to skip the terrible twos. I wanted them to stay innocent forever.
As they became teen-agers, I wanted them to be obedient and not rebellious, Mannerly and not mouthy. I wanted them to be full of love, Gentle and kind hearted.
"Oh, God, give me a child like this" was often my prayer.
One day he did...
Some call him handicapped...
I call him Perfect!!
Author Unknown
"Lord This Time You Gave Me
A Mountain"
