Hope Instead of Despair

by Jennifer Parsons

Photo of Aiden Parsons.When starting a new book, do you like to turn to the last page to find out how it ends? I have to confess, I am one of those people. I like to know how the story ends. Perhaps it has something to do with unresolved control issues, but that’s an entirely different article topic. The point of sharing that little quirk with you gives you a glimpse into my personality. The fact that I could not control my son’s diagnosis of Downs Syndrome at birth was, to say the least, quite disheartening.

I did not know how this story was going to end. Quite honestly, I didn’t even know if I wanted our story as a family to begin. I wasn’t sure if I could raise a child with “special needs.” I knew what to expect with a “normal” child. I do not have a PhD in child development, but I grew up with a younger brother and cousins. I babysat all through my teenage and young adult years. I loved babies and we planned to have one of our own. Yet, this diagnosis was not something I signed-up for.

What should have been a joyous occasion, suddenly turned into a surreal dream-like event that I was sure wasn’t happening to me. How could this have happened to us? We had plans for this baby. Since the moment we conceived, my husband mused about the great feats that awaited the pea-sized embryo. His child was going to attend his Ivy League alma mater, become the star quarterback for the University of Michigan, and graciously accept the Nobel Peace Prize immediately following kindergarten commencement. Like most parents, we imagined a perfect future for an even more idyllic child. We knew our child would have some flaws, perhaps inherit my family’s overgrown nose or adopt my husband’s famous stubborn streak, but not in our most extravagant imaginations did we ever envision a child with “special needs”.

We were not aware of our son’s diagnosis prior to his premature delivery at 35 weeks. I had preeclampsia and the only way to resolve the dangerously high blood pressure was to deliver the baby. After Aidan was born, the delivering physician reminded me that I had an “elevated risk for Downs Syndrome” and that he thought the baby presented characteristics consistent with that diagnosis. It was too early to tell for sure, but he was fairly certain. The neonatologists would conduct chromosome tests in the morning. With that, he left and we were escorted to the Neonatal Intensive Care Unit (NICU). After meeting the nurses in charge of Aidan’s care and an opportunity to hold him. We returned to my hospital room at 2 am. My husband kissed me goodnight and prepared to make the 5-minute commute home to get a shower, change his clothes, and sleep in our own bed. My mother silently settled into the pull-out sofa in my room. She had driven 9 ½ hours to be present at her grandson’s birth and was reaching almost 24 hours without sleep. I was given a sleep aid and slowly fell into a blissful state of slumber, imagining the whole incident was an unwelcome dream. I fell asleep thinking that I would wake with a healthy child in my arms and my imaginings of an ideal baby still intact.

I woke up at 7 am when the day nurse, Karen, came in to check on me. At 9 am the parade of professionals started - one after the other, pediatricians, specialists, social workers, and spiritual counselors. It wasn’t a bad dream – this was actually happening to me. I could barely breathe. Each professional wanted to know how I was accepting the news and if I wanted to see the baby. Not yet. I was devastated. I was embarrassed that my child was “not right”. What would people say? What had I done to cause this? I ate the right foods during the pregnancy. I digested enough folic acid to send the Florida Orange Growers to a prosperous and early retirement. I wasn’t over age 35. There was no history of Downs in our family histories. I participated in weekly water fitness classes for other excessively buoyant pregnant women. I had prayed and asked God for a healthy baby, why weren’t my prayers answered? The questions bombarded my thoughts in my own personal shock and awe campaign. Worst of all, if my husband felt the same way I did, I wasn’t sure if I had enough energy or optimism to tow both of us. When my husband arrived refreshed from a solid night of sleep, his attitude and perspective were amazing. He was so proud of his little boy. “Listen,” he said, “Aidan doesn’t know what we said before he was born. He doesn’t know what we planned for him. I say we just love him for who he is and encourage him to become the absolute best he can become. You’ve got to see him, Jenn, he’s so cute.” And so, that was the beginning of our story. Aidan was ours and I would learn to love him unconditionally and not worry about what other people might say or do.

One of the social workers asked if we would like to talk with a woman actively involved with a local organization that supported kids with special needs and their families. Her daughter also had Downs Syndrome. My husband and I both agreed we would like to talk with someone with more experience than our meager 12 hours of experience. A day after Aidan was born, a friendly voice called my hospital room. “Hi, Jennifer, this is Michelle from Parent to Parent. How are you doing? How’s your little guy?” This was a pivotal introduction that began to change my perspective on kids and families with Downs Syndrome. I heard first hand from a mother who was proud of her daughter’s accomplishments in a regular 2nd grade classroom, with “normal” friends, who loved horseback riding, and played softball. Until discussions with Michelle, unknowingly, I held terribly outdated visions of my child excluded from mainstream social interaction – isolated, the undeserving target of taunting children’s wounding comments. Michelle’s stories offered hope instead of despair.

In just six months since his debut into our lives, it is completely inconceivable that I ever had thoughts of not welcoming with open arms our beautiful little boy. Aidan is hilarious. He is the only baby I’ve encountered who laughs in his sleep. It seems that he is a chronic optimist. Even while tasting his first eye dropper full of medicine, he wrinkled his face and smiled. His smile is so large it appears to fall off of his face. I wouldn’t trade him for a nursery full of “normal” children.

If you recently found out you are expecting a child or given birth to a child with Downs Syndrome, all I can say is that I’m with you. I know where you are and it’s alright to be honest about what you are feeling – even if it’s ugly. But I would encourage you to not stay in that place of hurt or disappointment – it’s not the end of your story.