Dear Parents,

As they say "time heals all wounds" and I sincerely believe that. Hello, My name is Rosemary. My boys both have BWS. My older son is named Matthew. His Birthday is 3-9-84. My younger son is named Daniel. His Birthday is 8-14-88.

When I was about ready to deliver my first son, the Dr. decided to induce labor a couple of days before my due date, because I was huge. He was finally delivered 30 hrs later by c-section. He weighed in at 9lbs 4oz. He was OK at the delivery. The test came back that his sugar was low, so he stayed in neonatal ICU for a week. The Dr. told me a lot of babies have this sugar problem. At Matthew's 2week check up the DR's told us he had BWS And so began the long process of doing what needed to be done to help Matthew live a normal life. Over the next 6 months he developed all the symptoms. He got so big he didn't crawl till he was 1 year. He walked 4 months later. He was a fussy baby because he was hungry all the time. He was happy when he was happy. We adored him.

I really don't have a lot of stories about tongue surgeries, and such because we were spared with the Wilm's tumors and tongue reduction. We did go for ab checks every 3-6 months. During one of these checks, they found a gallstone in Matthew's gallbladder. The Dr. highly recommended surgery. He was 5 yrs. old.

Matthew was slow in learning though and his tongue did stick out till he was about 2yrs old, but not enough to have surgery. We did anything possible to help him. He has had speech therapy most of his 16 years. He was a big boy, and we could never get clothes to fit. Dress/church clothes were a nightmare.

What was really bad was the guilt. I blamed myself for passing this on to my child if I did or not. I was very defensive and embarrassed to take my son places, even around my family.

We had another son, and it was pretty much the same story, except Daniel was a little quicker in development. His sugars were not as bad. They look just a like.

It's a miracle my husband and I are still married. I couldn't move on for many, many years. Today as I said "time heals" because we have worked hard with the boys in all area's of their lives. They participate in all kinds of activities. Even though they may not be the best, I still gave them the chance to build their self esteem through sports, scouts, and church. When they were little I took them to the park for fresh air and sunshine. One mother was curious, as most are, about my boys. I told her briefly about the syndrome, and she said I was brave to bring my kids out in public. I thought, I can't be locked up in my house.

I don't want to come off sounding like a saint, because I had many down days too. I went many rounds with the principals and teachers who wanted to put limits on my kids. They may have been slow, but they could do most academics on an average level. You do have to go in there, and be a supporter for your child, and show them what your child can do.

One thing that does hurt is peer pressure. Hearing kids tease your kid is no fun, but they tease "normal" kids too, don't they? Some days I tried real hard to keep it in perspective, some days, I would go home and have a good cry.

When my second child was born someone told me about Susan Fettes, and her support network. I got the news letters, and read every inch of them. When we took trips, we would stop and visit other BWS families. One thing I have learned from this syndrome is the half full-half empty syndrome. Every child is different, it is God's way.

The years have flown by, and the boys are doing pretty good. We are coming on to the teenage years, and the whole new set of problems that brings. I hear the pain in your notes, and messages. I wish I could reach out and hug you, and tell you things will be all right and that you will survive these long years. I probably couldn't come close to some of the problems you have to fix, but I think I can understand the feelings of desperation.

Please feel free to contact me anytime. I am very easy to talk to.
Rosemary
May 15, 2000