MOSAIC MOMENTS

As president of International Mosaic Down Syndrome Association, I often have the opportunity to watch families grow. As a mom of a son with mosaic Down syndrome, I understand the pulling of emotions that one goes through when they first get that diagnosis for their child and how the many emotions you go through can make you feel as though you are spinning out of control with nothing to grab hold of to make it all stop. It is, as if you are falling aimlessly through “Alice in Wonderland’s” rabbit hole and as you continue to fall you begin to just wait for the bottom of the hole to hurry up and land, so you can pick youself up and get back the control you once had.

In today’s story, I think Jamie explains those emotions very well for the new parent who has just been told their child has mosaic Down syndrome or for that matter anything that is different from what they expected.

I, too, went through many of these same emotions when Tim was first diagnosed with mosaic Down syndrome, and the best thing that happened to me at the time was when someone told me that it was ok to feel the way I felt. This helped me know that I was going to be ok and I wouldn’t feel this way forever. And, it is true. You go through the emotions and then you pick yourself up, dust yourself off, and move on.

For those parents who just can’t seem to get past that feeling of hopelessness or panic, don’t hold those feelings in! Sometimes it is harder to get past that diagnosis, but there are people who are there to help you! Talk to other parents, talk to family and friends, you can even talk with a counselor to help you get through these feelings. It doesn’t mean that you don’t love your child any less. In fact, it probably means you love them all the more!

Join me in this candid story of how Jamie and her husband got the news of little Andi’s diagnosis.

On February 25, 2008 our lives changed forever.  We had our first child.  She was 9 pounds and 20.75 inches long.  My husband and I named her Andi.  She was a great baby.  She did everything she was supposed to- eat, gain weight, and fill-up her diapers with love.  Three months after Andi was born we found out a little bit more about our daughter.  Here is our story.

“I have never seen this before in my eight years of practice; Andi has mosaic Down syndrome”, the pediatrician explained to me.  As tears poured down my face, she went on to explain the science of MDS; however, I was not in a place to understand.  I remember pleading to the doctor, She’s just too strong.  She held her head up at six weeks.  She plays with her toys.  SHE IS JUST TOO STRONG. I left the doctor’s office feeling that my baby was broken. I left without information in hand except a piece of paper telling me that my daughter has an extra chromosome in some of her cells. What do I do with this paperwork? Just tell me where to go for the solution. 

That same day I had an appointment with my doctor who delivered Andi.  I had an abnormal pap at my six week appointment and needed a more thorough exam.  As I sat waiting for my name to be called, I remembered back to the day during my pregnancy when we spoke of the quad screen. Originally, I had turned it down. I felt that no matter what the results, this baby would be mine and I would not have an abortion even if the screening test showed an elevated risk. She went on to explain that the test is about preparing and educating yourself.  I had never thought of it that way.  I went forward with the quad screen, and everything came back normal.

When I finally got called back for the check-up, my doctor was surprised to see both my husband and Andi there.  She asked how everything was going, and again tears poured down my face. “Andi has mosaic Down syndrome. How could this happen?” I had a 1 in 6,542 chance to have a child with Down syndrome. At that point, I did not understand the difference between mosaic and Down syndrome; all I heard was the words Down syndrome.

“It is just that,” she said. “It’s 1 in 6,542.”

I was angered by her response.  It was not good enough. “How often does this happen?” I asked.

She looked at me and spoke. “I can honestly say never.  In all my years of practice, I have never had someone (with those numbers) have a child with mosaic Down syndrome or Down syndrome.”

I could see the compassion in her eyes as she went on to say, “Jamie, it is okay for you to be angry.  It is okay for you to be disappointed.”

This was the first person to tell me that my feelings were normal, and just because I feel this way does not mean I do not love my daughter. I knew that she would not judge me for these horrible feelings.  I thought to myself and realized that I was not mad at my daughter or God for giving me this baby.  I was mad at science.   I was mad that science told me that I was going to have a “perfect” baby.  I was mad that I relied too much on statistics to tell me everything was fine.

The next couple of days were overwhelming. From the numerous phone calls and appointments to schedule, I knew that I was on the slow road to understanding.  I called to schedule appointments with a pediatrician cardiologist, a geneticist, an eye doctor, and a developmental pediatrician.  It was one thing to hear your daughter has MDS but it was a whole other experience to know what that label entails. Every person we met in the medical field told us that this was their first mosaic patient.  That was a little discouraging due to the lack of information about MDS.  However, we were fortunate to have Andi’s health check out to be normal. 

When my husband and I went online, we came across International Mosaic Down Syndrome Association (IMDSA).  We finally found information about mosaic Down syndrome.  We quickly became members and got in contact with other families who have children with MDS.  Since then we have learned so much about MDS and we are still learning. 

I will never forget May 21, 2008 because that was the day Andi’s little secret was revealed.  I no longer think as my baby as broken.  I am no longer mad at science, nor do I rely on statistics to tell me that everything is fine.  What I do believe in is Andi.  She is 7 months old and surprises me everyday.  She is developing as a typical child — hitting all of her milestones, talking, and teething (not as much fun as the other two).  I do not know what the future will hold for my daughter, but I have come to realize, “What parent does?”  What I do know is I will support her in any way by giving her the tools and education she will need to reach her full potential.  But the most important thing I want for Andi is for her to be happy and have good health..

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