It's National Down Syndrome Awareness month and I thought I'd take a moment to speak about what it's like to have a child with Down Syndrome. I'm not sure if I've ever shared publicly my journey through the pregnancy, diagnosis, subsequent challenges and the ultimate realization of God's amazing love through the soul of Christopher John DeGenaro. So here it goes:
I was just as excited as any first-time pregnant mom could be. I had told my husband before we were married that I wanted to get pregnant as soon as we said "I do". To me, there could be nothing better in this world than to be a mommy. I was eager to get pregnant, but it took two years before I finally got pregnant. It seemed like an eternity, but I now understand that God gave me that time alone with my husband to prepare us both for what was to come.
My dream had finally come true- I was finally pregnant! I began to plan the nursery, and started taking all of my vitamins and eating all of the right things (and then some...). I was so excited that I could hardly stand it. I loved being pregnant. I felt pretty having a big round belly that could be explained as pregnancy and not the lack of seeing the inside of a gym since high school. I had just finished teaching third grade that year and although I was looking forward to going back to teaching high school, I gave my notice that I would not return in the fall. The baby would be born in December and I didn't want to leave a class mid year. I had six more months of preganancy left, but I kept myself busy with getting everything I needed ready for the arrival of our little one.
I was getting all of my ducks in a row. A perfect nursery, my job on hold, my belly growing beautifully, my life seemed perfect. And then the fifth month came. The first phone call: "Your AFP came back elevated, but probably a false positive. You are only 29, chances are slim". Fear ripped through my body. The thoughts of what a baby with Down Syndrome would be like terrorized me. I imagined the worst. The doctor suggested we do the amniocentesis so that it would calm our anxieties since the baby most likely did not have Down Syndrome. Eager to dismiss the awful thought that our child would not be "perfect", we agreed. Back in 1997, we had to wait for two weeks before the results would come back. Two very long weeks. Then the second call: "Mrs. DeGenaro? Is your husband available so that the doctor may speak to the both of you?". The doctor proceeded to tell us that our child was going to be Mongoloid. "Mongoloid? What's that?", demanded my husband. Mongoloid is a term used in the third world countries. My Doctor being old and ready to retire, was still calling children with Down Syndrome Mongoloid. Having heard the term before, I calmed my husband by saying "He has Down Syndrome". My husband, breathed a sigh of relief. He could deal with Down Syndrome, but not the horrible sounding Mongoloidism.
So this was our induction to the world of Down Syndrome. The days following were filled with meetings at the geneticist's office to discuss our "options" with us. We were told that the only option was abortion or a doomed life of utter hardship. They supplied us with laundry lists of the the things the baby would probably never be able to do. I was also told of the many medical problems that the baby could have. There seemed to be nothing good about a child with this condition. At the time I called myself a Christian but I really had no relationship with the Lord to speak of. But even so, I knew and my husband knew that ending a baby's life because he wasn't going to be "perfect" was wrong. How could we terminate the pregnancy that we had so desperately wanted? We decided that abortion was not an option for us. If this was the baby that God was sending us, then we were not going to reject it based on chromosomes. So with a somber heart we left the doctors office ready to face the doom that lurked in the horizon.
When you stop and think about your life in retrospect, you can see how God is always preparing you for your journey and how he puts people in our lives that help you through the valleys. We were blessed to live next door to the most amazing people you would ever want to be neighbors with. I can write a whole chapter about Tim and Debbie and their kindness. Tim and Debbie were Christians, true Christians. They show you with their actions how much love they have in their hearts. It was Debbie who introduced me to a woman named Patty who had a child with Down Syndrome. I will never forget the day I met Patty and her beautiful five-year-old, Evan. He looked like the little boy from Gerry McGuire. The two of them were like a ray of sunshine for my gloomy life. Patty looked down at Evan and told him that I was going to have a baby. He looked up at me and said, "Congratulations!". My heart was melted, and my hope was ignited. Here before me stood a boy who could talk, who could walk, who could read, who could relate to people...everything that I had just been told my child would probably not be able to do. It was that moment that I decided I would fight the world if I had to, but I was going to give this baby every fighting chance to be the best that he could be. Maybe he would not do everything I saw Evan doing, but we were surely going to give him all the support he needed to have the best life possible.
In an effort to shorten my post, I will have to continue my story in another chapter. But for those of you that did not have the privilege of knowing Chris, I just want to say that the ending to this story is amazing. He did learn to do all those things and then some. What's most amazing about Chris is that he did all those things despite undergoing six major surgeries by the time he was six months old ( including open heart surgery, resection of his bowels, gangrene in the intestine and dependency on iv nutrition for the first two years of his life). And if you ask me today if I'm glad I didn't consider my "options" at five months of pregnancy, the answer is unequivocally "YES!" I cannot even imagine not having had Chris is my life. I am the person I am today because I had a boy who taught me so much. Through Chris God taught me to speak up, fight for what is right, never give up and most of all that God is ever-present in our lives (even though we don't think so).
Blessings to you all and if you have the honor of having a child with Down Syndrome in your life, please give them a hug from me. I miss the oodles of hugs and kisses that Chris gave me. Savor yours!
So beautifully said.
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