Shortly after Mikey was born we received an e-mail from the brother of a woman who had just had a baby girl with Down Syndrome. In part, his letter said, "My sister is SO depressed because the baby is diagnosed with Down Syndrome. Please e-mail anything positive you have experienced so my sister will not be so sad." In response we wrote the letter below. We would like to share that letter with all couples who are going through what Mallory's mom and dad are going through.

 

Hi,

Congratulations on the birth of your daughter, Mallory. My wife and I have a 4 month old son named Mikey. He has Down Syndrome so we know how you feel. For the first few days it wasn't easy to accept what happened. We expected one outcome but instead were handed something very different. Don't be afraid to mourn the loss of the little girl you were expecting. Don't be afraid to cry. I got drunk every night for the first few nights after Mikey was born because it was the only way I could fall asleep.

But it gets better. The hurt really does fade away to the point where you can handle it. Then you are left with a beautiful little baby. Mikey is a wonderful little baby and he needs us so much. We have to be strong for him. Maybe Mikey won't be a nuclear physicist but with hard work and lots of love Mikey should be able to take care of himself and most importantly, be happy.

In the book "Uncommon Fathers," one of the fathers talks about his daughter who has Down Syndrome. After they were told, they were so upset that they decided that they would not bring their new baby home but rather they would have her institutionalized. When they arrived home without the baby, they explained to their son about the problems of a Down Syndrome baby and why his new sister would not be coming home. After a short while their son asked, "Dad, does this mean that if something happens to me and I'm not so smart anymore, that you will send me away?" Of course, they immediately went and brought his sister home. The point of this story is that we love our children no matter what. Bad things can happen to healthy children with the right number of chromosomes but we still love them.

We know so little about Down Syndrome and the truth is that every adult with Down Syndrome alive today was raised in a society that didn't want them and did nothing to help them. But the times have changed. New laws like IDEA have created a society where people like our children who have a disability can get whatever services they need to help them. We do know that with early intervention, a child with Down Syndrome will advance much faster than a child who does not receive early intervention. In some cases, they even advance faster than "average normal" children. With new treatments perhaps discovered in the near future, our children may go farther than we could ever hope.

I am not going to tell you that raising a child with Down Syndrome will be easy. But raising a "normal" child is not easy. The truth is that it will be hard work but it will carry wonderful rewards. Your daughter needs you to love her and she will love you and work hard for you in return. She will do all the things that every baby does. She may take a little longer and she may have to work a little harder at it, but she will achieve every one of the milestones for a growing child. She will go to school. She will go to school with "normal" children. She will learn to read and write. She will succeed. Expect much from her and I think you will be surprised at how far she will go.

Finally I want to share two statistics from the book "Understanding Down Syndrome: An Introduction for Parents" by Cliff Cunningham, with you:

"Between 50 and 75 percent of parents who have had a baby with Down Syndrome report that once over the initial shock they found the experience rewarding and strengthening."

"A study asked mothers of young children whether they felt they had coped with their baby and young child. Over two-thirds said they had coped. Their was no difference in overall response between mothers whose babies or young children had Down Syndrome and mothers whose children were 'normal.'"

You will cope and you will handle it because you are a the mother of a beautiful new baby. Mallory is your baby and you are responsible for her. She needs you just like every other baby born into the world needs his or her mom. When it comes to the bottom line, we didn't ask to be put into this boat but we're in it and now we have to take care of our babies. I hear Mikey crying. I think I'll let Michel sleep in late today. Babies really are a handful.

Again, congratulations and give Mallory a big kiss from her friends on Long Island.

Peace.

Tom and Michel