OUR BEAUTIFUL SON MYLES
The headline in the news read, The Amazing Story of Myles. Later we would realize just how amazing our son really was…
Our son Myles Moses was born on January 5, 2000. It is still so fresh in our minds how we anticipated his arrival. We did everything we could to prepare ourselves, our home and our other children for the coming of “the baby”. Our bags were packed and in the car. We practically rearranged and remodeled our entire house as part of the proverbial “nesting syndrome”. We even enrolled our other children in a sibling class so they would better understand what was about to happen to Mommy and what to expect from a baby brother. In retrospect, nothing could have possibly prepared us for our son’s arrival. Myles was born officially enroute to the hospital, in our car, with our other children Trey 6 and Jordan 3 looking on.
The morning after the traumatic delivery, as I sat alone in my hospital room waiting for my husband to return from taking our children to school, the attending pediatrician visited with some very distressing news. She informed me that there was reason to believe that my beautiful son Myles had Down
syndrome. I recall the feeling of nausea that took over my body as I fought back the tears and listened to her. I tried to convince her that Myles’ appearance was due to the traumatic delivery and the fact that he was lying on the floor of our car in 30 degree temperatures. She insisted instead that some of his physical features were consistent with “a chromosomal abnormality” and she wanted to run further tests to be certain. She elaborated by saying his pinky fingers turned slightly inward, that he had a small concaved chest consistent with that of a possible heart defect (which he did not have) and that he presented with low muscle tone throughout his body. These were the hardest words I’ve ever had to listen to. I paced the hospital room floors, sobbing my eyes out until my husband returned. I will never forget his reaction when I told him. He was so unbelievably strong. He quickly said, “Okay… he will be the luckiest baby with Down
syndrome in the world. Just tell me what to do”. He went on to say, “This is not a death sentence for us or Myles. We will work through this”. He has not wavered yet.
We had to wait about 7 days after the testing was completed to get the results. At that time it was confirmed, Myles had Down
syndrome. The days that followed were the hardest days of our lives. We grieved. We grieved for the normal child we thought we had lost. We grieved for our other children. They now had a sibling with Down
syndrome. We grieved for ourselves. We would now have to spend countless hours in therapies and at doctors appointments. But most of all, we grieved for Myles’ future. Like any parents, we dreamed about him going to college, marrying, having children and even bringing his family home for the holidays.
The grief didn’t last long. My husband and I became very proactive in seeking assistance. We started with a visit to the Comprehensive Chromosome Clinic at Duke. The genetic counselor there informed us that Myles’ Down
syndrome began at conception. We were relieved to find out that we didn’t “cause” it and that there was nothing that we could have done to prevent it. It was at this time that we realized that there never was any other Myles. It was determined at the very onset of the pregnancy who he was, but in our minds not necessarily who he would be. We
de
cided that we would do everything we could to help Myles reach his full potential.
We now realize that Myles can still go on to college, maybe even marry and live a very fulfilling life. As for his siblings… We have decided to talk to them about Myles when they are ready. For now, they just adore their new baby brother. They don’t understand words like Down
syndrome, limitations and delays. They only understand words like baby, brother and love.
Chareen
Triangle Down Syndrome Network
