Thursday, October 24, 2013

Oct, 2013 Down Syndrome Awareness... Day 23

This post was written by a mom whom I admire so much. I am old enough to be HER mom (oh my goodness Melissa, I JUST realized that!!)... but she already has more grace, courage and wisdom than I have ever had.

The post doesn't need any of my words to introduce it. But it does need a warning attached... GRAB YOUR TISSUES.

From the moment that my husband and I started dating, it was evident that we were meant for each other. We both loved northern Maine and planned to move back as soon as possible, we had similar morals and values, and we both wanted four kids! That’s why I don’t think anybody was surprised when Caleb and I, just a few short months after we were married, announced that we were expecting our first child. Our parents were over the moon! This would be the first grandchild on both sides of our family!

The morning of my mid-pregnancy ultrasound, my husband and I discussed our hopes and dreams for our future child. My husband thought that we would have a boy, while I insisted that I knew it would be a girl. Our baby’s gender was one of the only things on our mind. Boy or girl? Pink or blue? Cars or dolls?

Finally, after what seemed like forever, the sonographer called us in. We could barely contain ourselves! Caleb and I held hands as the sonographer performed the ultrasound. The anticipation mounted until she said the words that we had been waiting to hear: “It’s a girl!” We were thrilled; unfortunately, our elation was short-lived.

We noticed that the sonographer was acting a little “off”. When we asked her what was wrong, she said, “I just take the pictures, the doctor will be in shortly”. One of my very best friends is an ultrasound tech, so I knew that this is code for, “something is not right”.

It’s so funny how finding out whether we were going to have a boy or girl seemed so significant an hour before, and now we were worried about the health of our unborn child. When the doctor came in, she explained to us that the sonographer identified 2 “soft markers”. Basically, our little girl had a bright spot on her heart and bowels. We were told that these spots elevated the chance that our daughter could have cystic fibrosis, Down syndrome, cytomegalovirus, etc.

All of a sudden, we were meeting with a genetic counselor to discuss our chances of having a baby with Down syndrome and what testing options we had available. Based on my age, our baseline chance of having a baby with Down syndrome was about 1/1400. After a thorough medical history combined with the ultrasound results, the genetic counselor announced that our risk of having a child with Down syndrome was 1/100. With those low odds, we did not want to expose our baby to the risks of an amniocentesis, so we opted to do a very new kind of blood test called the noninvasive pregnancy test, or the NIPT. At the time, the test was under a year old but shown to be extremely effective at screening from chromosomal abnormalities. Basically, a sample of blood is taken from mom and at the lab, they are able to isolate and analyze the baby’s DNA.

Waiting for the results was agonizing. Caleb’s brother, Ian, came to visit us during this interminable period. At one point we were walking to a restaurant, and I told Ian, “Our daughter is going to have Down syndrome. I just want you to know now so that you aren’t surprised and so that you have time to get used to the idea. She is going to have Down syndrome.” Ian said that he would take 1/100 odds “any day of the week and twice on Sunday”. Caleb said that I freaked his brother out and that I shouldn’t say anything until we got the results. The chance was so small, after all. I told him that I knew our girl was going to have Down syndrome. Just like I knew she was going to be a girl. I couldn’t explain it. I just knew.

The morning after Christmas, we were at my parents’ house. I realized that I had forgotten my phone downstairs, so I asked Caleb to go get it while I went to the bathroom. We were expecting the call any day now. Sure enough, as soon as he grabbed my phone, it started ringing. It was Tufts Medical Center. As I walked out of the bathroom, I heard Caleb ask the caller to please hold on a minute while he got me on the line. We sat down in the kitchen together and put the phone on speaker.

The anticipation in the room was palpable. I could feel my whole body tingling.

Caleb and I held hands while we heard our genetic counselor say, “we got the results back and they were positive for Down syndrome”. At this point, Caleb and I both tried our hardest to keep it together for the rest of the phone conversation. Our genetic counselor talked to us about our options. We still had time to terminate the pregnancy. We told her that we did not want to go that route. She mentioned that there were support groups. We had the option of meeting families who had children with Down syndrome, etc. It was all very overwhelming. When we hung up the phone, we both burst into tears.

Down syndrome doesn’t happen to 23 year old newlyweds. At least that’s what we thought. Before our daughter’s anatomy scan, Down syndrome was not on our minds at all. It was something that happened to older parents. For us, it was a non-issue. It didn’t exist.

After we recovered from the wave of crushing sadness (which only lasted a few days) , I sprang into action. I decided that I was going to learn everything and anything about Down syndrome. I became a sponge. I ordered books, subscribed to blogs, reached out to the Massachusetts Down Syndrome Congress and the Maine Down Syndrome Network. I was unstoppable.

We were not going to hide from this during my pregnancy, and we certainly were not going to hide our daughter once she was born. I wanted to be able to show her off, just like any other mommy wants to show off her new baby! I wanted our loved ones to greet her with tears of joy, not tears of sadness. I wanted people to see that our experience raising Rosalie was not going to be a whole lot different from their experiences raising their own children.

In order to share the news with our friends and distant family, I wrote a post on our blog about Rosalie’s diagnosis. The support we received was astounding. I received messages of encouragement from people I barely knew. I made friends with strangers who have children with Down syndrome. Our own family rallied around us. It brought us so much comfort to feel surrounded by such love and acceptance.

On April 27th, 2013, our sweet daughter, Rosalie, was born. Thanks in part to our prenatal testing; I am happy to say that it was the best day of my life. When I looked at her the first time, I didn’t see Down syndrome. I saw my beautiful baby girl.

Caleb and I were mentally prepared for potential health problems (children with Down syndrome are more susceptible to feeding problems, heart problems, hearing problems, vision problems, digestive problems, cancer, etc.), but they never came! Aside from two tiny holes in her heart and some minor hip dysplasia, she was as healthy as a horse.

We’re not going to let a little thing like Down syndrome get in the way of Rosalie having a happy and fulfilling life.

At just under 6 months old, she is already changing hearts and minds. I can’t wait to see what the future has in store for my exceptional daughter. ~ Melissa 

Melissa, thank you for being you. For being strong and brave. Rosalie is perfect for you and Caleb... God couldn't have done any better.


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