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Uniting Unique People in a Unique World

International Mosaic Down Syndrome Association

PO Box 321, Stow, MA 01775

1-855-IMDSA-21

Letter to my Fellow Grandparents

Hello to all of my fellow grandparents and welcome to this very special group.

My name Donna and I am grandmother (gram) to Adam who is now two and a half years old, and just happens to have mosaic Down syndrome. My story began just like many of yours. In July of 2002, I was not so patiently awaiting the birth of my first grandchild. We knew we were expecting a boy and I was so excited since I am the mother of two girls and this would be my first experience with a little boy. I was busy planning all of the wonderful things we would do, wondering what he would look like and what life had in store for him maybe he would be president. Then the day came and my daughter was in labor. She invited me into the delivery room where I had the honor of being there to welcome my beautiful new grandson into the world. We counted fingers and toes and realized we were looking at a miracle. A perfect little boy. The next morning the nurse told my daughter they were doing blood test on little Adam just routine, but when I looked through the nursery window and saw the nurse drawing blood from the artery in Adam's tiny wrist, I knew this wasn't routine. I didn't want to worry my daughter so I waited until later that day when a geneticist came in to speak to us about the possibility of Down syndrome. She assured us that this was a precaution because Adam wasn't displaying any of the physical characteristics of DS just his little tongue poking out every now and then. Two days later, we received the call that Adam had mosaic Down syndrome. I had never heard of this before and I felt very helpless. I am sure that most of you can relate to this story. Your circumstances will be different but we all had the same outcome our precious little grandchild has MDS. So now what? Things will be a little different than we planned. As grandparents, we must be strong. There will be times when our children will need a shoulder to cry on, but I am also happy to say that there will be many more times when our children will call us to tell of the wonderful accomplishment our little one made that day. At two and a half, my grandson knows his ABC's, can count to 10, runs, jumps, and has a bad case of terrible two's just like all of the other little boys his age. The best advice I can give you is to educate yourself about MDS. The more you learn and the more you communicate with other families of children with MDS, the less frightening it becomes. Don't waste too much time worrying, but instead, spend time enjoying your grandchild. Remember all of the plans you made before your grandchild was born, don't change them. You may have to go about them a little differently and they could take a little longer to accomplish, but they are not out of reach. I know Adam will never be the president, but then again if you look at the big picture, not very many people get to be grandparent to a president.

Best Wishes,

Donna, Grandmother to Adam

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