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When I Realized the Power of My Baby With Down Syndrome's Eyes

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To say I was shocked to find out that I was pregnant again at 43 years old, would be quite the understatement. My husband and I tried to have a child for 16 years. We even saw a fertility specialist and worked with him only to be told that I had “unexplained infertility.” It took years for us to accept that children just were not in the cards. Then shortly after my mother passed away from heart failure, I unexpectedly found myself pregnant. We had our perfect little miracle baby on my late mother’s birthday. Everything seemed perfect.

I remember talking with my OB after we had our son, Luke, about birth control and whether I needed it. He smiled and politely explained that at my age, if I were in perfect health, I would have less than a 5 percent chance to get pregnant. However I was not in perfect health and it was nothing short of a miracle that I had one baby, therefore, birth control wasn’t a necessity for me. So when I took my pregnancy test, prior to calling and setting up an appointment to have my hormones checked because I just knew I was entering menopause, and two lines appeared, I did not handle it well. Instead I grabbed the test, flung open our bedroom door where my husband was still asleep, chunked the test across the room while screaming “this can’t be right” as it hit my husband on the head, waking him up.

But it was right. At 43 years old, I was about to become a mom again. Then just as the shock started to give way to slight excitement, I received “the call.” I had taken a prenatal genetic test due to my advanced age. When I answered the call, and my OB said the words “Can you talk right now?” I knew. He didn’t even need to say anything after. I remember everything just went into slow motion and it seemed like it took him forever to get the words, “I’m so sorry to tell you this, but your results came back positive for trisomy 21.”

My world shattered. I spent the next 12 hours crying so hard that it looked like I got in a fight with Mike Tyson and lost. My eyes were so swollen that I actually couldn’t see.

We immediately were sent to a high-risk specialist for the duration of my pregnancy. I expected to meet with this doctor and gain positive insight on Down syndrome. Instead, we were met with him almost encouraging us to terminate the pregnancy. I had just watched my baby on an ultrasound doing flips and waving his arms inside my belly, and he is letting me know that at any point I can decide to terminate this “problem.” After we firmly explained to him that he did not need to mention that alternative to us again because we would be keeping our baby (not problem), he dropped the subject and we moved on to any issues our baby may have.

For the next six months, I regularly went for ultrasounds and each time, we were told that the baby did not show any markers for Down syndrome except for a slightly thickened Nuchal Fold. For some reason, this made me begin to wonder if maybe the genetic test was inaccurate. It said we were 99 percent likely to have a baby with Down syndrome, but maybe just maybe, we were in that other 1 percent.

Then on New Year’s Eve, I knew something was not right. Our baby had not been moving that day. So we rushed to the hospital and had an emergency C-section at 9:30 pm. I later joked that Ace, our baby, was just trying to help his accountant momma out. He was just making sure I got that tax deduction before the new year started.

When the nurse handed the baby over to my husband in the OR, I am ashamed to say that a feeling of sadness overcame me. It wasn’t the magical moment that I had read about would happen. Ace opened his eyes and those almond-shaped eyes that were staring at me left no doubt that he indeed had Down syndrome.

I loved this baby. That wasn’t even a question, but the sadness overwhelmed the happiness I should have felt. I could only think about the hard times that were coming for this little angel.

When Ace slept, I would watch him for hours. You see, when his eyes were closed, I could almost convince myself it was all a bad dream and he did not have an extra chromosome. But inevitably, he would wake up and stare at me with those big almond eyes, and once again everything would fall dark.

Then one day when Ace was about 4 weeks old, I was driving my other son to Pre-K with Ace in the van. Out of nowhere, I hear my son say, “Why are you just so cute? You are the cutest!” I smiled and looked in the rearview mirror to see him leaned over as close as he could get to his baby brother.

I interrupted and said, “You are cute, too!” To which Luke replied, “I know but not as cute as Ace. He has the cutest eyes ever! How did he get the cutest eyes in the whole world?” I thought, “What in the world is he talking about? His eyes are the only part that’s not the cutest. Why would he say that?” But I didn’t say anything. I just smiled and told him I loved how great of a big brother he was. But that moment stayed with me for the rest of the day. I just couldn’t quit thinking about him saying that.

Later, I was trying to feed Ace who had some feeding issues already. Every time I would sit him up and put the bottle in his mouth, he would buck backward and stretch that back and extend his neck to the side and just lock his eyes on me. About the third time he did this, I stopped and quit looking at the bottle and I looked at Ace. To this day, I cannot express what I saw. This 1-month-old baby was piercing through me with those almond-shaped eyes. He wasn’t looking at me. He is was looking INTO me. I could feel it down in my soul. My eyes locked on to his, and tears just started pouring out of me.

For the first time, I saw him. All of him. I didn’t see Down syndrome. I saw pure, unfiltered love in those eyes and it was the most beautiful thing I had ever experienced. I finally saw what my son, Luke, had seen all along. He was right, Ace’s eyes were absolutely amazing. How did I not see this before?

When you receive the Down syndrome diagnosis for your child, the doctors are sure to tell you about the medical conditions that are more likely to occur. They will explain how the child will look and develop differently than others, But they do not tell you about the power in their eyes. They don’t tell you that they can pierce you with unconditional love. That they can see into your soul and make you feel more love than you knew was humanly possible even before they are able to jabber a sound.

Those eyes that I had avoided for the first several weeks of his life, are now my absolute favorite feature of his. I can get lost in those perfectly slanted, sparkly eyes and I have a 5-year-old to thank for opening these old eyes to the beauty that was before me the entire time.

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Photo submitted by contributor.

Originally published: October 16, 2020
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