What I've learned as a parent of a child with Down syndrome:
1) The misconception that Down syndrome is most common with older parents. I was 28 when my daughter was born and never expected to give birth to a child with Down syndrome. I quickly learned that although the chances of Down syndrome are higher for women over 35, more babies with Down syndrome are born to women under 35.
2) I wish I knew then, what I know now. When my daughter was born, I knew nothing about Down syndrome. I had no idea what to expect, and no idea just how normal our lives would be. Much of the NICU staff told us all the things to worry about, the medical problems she could face, the delays to expect, etc. I felt like my world was being flipped upside down, and that all of our dreams for the future were over.
I quickly realized how wrong I was.
One of the most important phrases in our world is
"more alike than different." Sure, she has delays, extra medical appointments, therapies, etc. But in the grand scheme of things, she is more like every other child than she is different, no matter how many chromosomes she has.
Kennedy is an amazing little girl. She loves to dance, she loves the beach. She is the best big sister that my son could ask for. She is a ray of sunlight and happiness, most of the time. She's also a typical 2.5 year old who throws tantrums, wants to be heard, has feelings, wants, and desires. As she grows up, she will continue to have feelings, dreams and goals. They may not be the goals I always dreamed of for her, but that can be true for children without Down syndrome as well. At the end of the day, my husband and I will do everything we can to support her and help her achieve her goals.
3) The abortion rate for women with a prenatal diagnosis of Down syndrome is high. Very high. I'm not surprised, based on some of the negativity I have seen and heard from doctors. I feel like there is so much more education to be done on the part of the doctors delivering the information and on the preconceived ideas that people have about individuals with Down syndrome. I think the abortion rate may continue to increase with the availability of the minimally invasive blood tests.
But on the flip side, if we (parents of children with Ds) and the medical community can do something to make society see our children as valuable members of society, and not the "burden" that many people believe, those numbers can decrease. I do not believe that these tests are the end of Down syndrome. There will always be a population who doesn't care how many chromosomes their child has. There is part of the population who doesn't have prenatal testing. That's where we fell into. We knew the results wouldn't matter.
And even though Kennedy had a congenital heart defect, and I had top notch prenatal care, her diagnosis was a surprise at birth. It was shocking and scary, and at the time I sort of wished I had known. Just to better prepare myself. But I probably would have worried a lot more too. In the end, everything worked out just the way it was supposed to.
When my daughter was born I said to my mom, "I don't know how to be the mom of a child with special needs." I didn't think I was strong enough. I didn't think I could get through her open heart surgery. But you never know how strong you are until you have to be. I will always advocate for my daughter, as well as all of my children. I thought Down syndrome would be the center of our universe. But now, there are days that I don't even think about it. In fact, a lot of days, I don't think about it. She is a person, before her diagnosis. A "typical" 2.5 year old that happens to have an extra chromosome.
Jennifer Merritt is a stay at home mom, married to a wonderful man, and raising their beautiful daughter, Kennedy and her little brother Caleb. She blogs about her experience with Down syndrome at Life As We Know It.
