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Essay | My Little Man’s Heart

March 21 is World Down Syndrome Day

By Ginny Baugher-Buccelli

hand-palm-baby

Memphis was their third pregnancy. Despite their youth, 23 and 22 respectively, my son and his then-wife were already veterans of two miscarriages. The idea of losing a third child was devastating to them. My heart ached; their jubilance and utter joy at a pregnancy that had lasted beyond the first trimester had quickly turned to worry and terror.

At the 20-week appointment they learned the baby’s gender alongside the news of a congenital heart defect. Initially we were told that Memphis likely wouldn’t survive to a full-term delivery, and if he did, he would not see his first birthday. A subsequent amniocentesis uncovered the Down Syndrome. Memphis had a full AV canal defect, which essentially means that he had a hole inside his heart. While his heart could pump, the oxygenated and non-oxygenated blood mixed.

memphispacemakerFive and half years later, Memphis is a happy kindergartener. Open-heart surgery at six months was successful, although it did leave him with a pacemaker and plans for more surgeries later in his childhood. Recently a routine check-up found that his pacemaker had stopped working without warning. He underwent emergency surgery that afternoon and was strong enough to go home two days later. His health history is not unusual, as the majority of babies born with an AV canal defect are Down kids. His ability to bounce back, however, is awe-inspiring. The day after surgery he managed to convince me and his nurse to allow him to walk the ward. Not bad for a kid with few verbal skills and a fresh new scar down the length of his chest.

Despite the best of intentions, and my presence during her labor and his birth, I didn’t initially bond with Memphis, my first grandchild. There were marital issues with the young couple from the start that affected the relationship between Memphis’ mother and me. When their marriage fell apart, my son and grandson moved home. For the next two years, I got to see Memphis every week. Once we were allowed regular contact, it didn’t take long for My Little Man and me to fall in love with each other.

I vividly remember the first time I held my son to my chest: A feeling of rapture washed over me. When I hold his son in my arms, that feeling is magnified. Once we had time together, the fun began; when asked if he wanted to hear “Itsy-Bitsy Spider,” he would scramble into my arms for our pre-nap routine. We chose videos on YouTube to watch together, over and over again. I can’t get enough of his full-body-arms-thrown-around-my-neck-and-squeezing hug—they’re addictive. They lift me up in a way that I can’t describe. If I have to wait more than a few weeks to see him, I feel the physical pain of loss in my chest.

PapaNanaMemphisI view the mediator-created custody schedule as convoluted and completely irrational; each week in every month is slightly different. My Little Man spends half his week with his mother and her boyfriend and half with his father, stepmother and stepsiblings. I worry that the constant change between households undermines the good work that his teachers and his father do. I watch in awe as my son and his new wife offer structure and consistency; they are focused on teaching Memphis to be self-sufficient and communicative. Still his verbal skills are delayed; he uses a combination of a few ASL signs, pointing and nodding or shaking his head to communicate things he considers to be most important. The rest, well—it is clear that he feels those things are our responsibility to communicate.

In school he receives speech, occupational, and physical therapies. Developmental delays have been evident since infancy, but there was a time when his self-sufficiency was advancing. He lost a lot of ground in the first months of his parents’ split, and I worry that his current delays are a result of too many missed therapy appointments since the separation and divorce. All kids struggle with adjustments when their parents divorce, and I suppose in some ways his regressions are normal. But I feel incredibly powerless while he stumbles and struggles.

Mr.Memphiswithglasses

Despite all this, I see an extraordinary child. While he tends to like to dump buckets of toys on the floor or throw them across the room for sport, when he believes that no one is looking he will create amazing sculptures out of disparate items, only to dismantle them when he spies a witness to his genius. He can work the iPad or iPhone more efficiently than anyone in the room. I see age-appropriate limit testing when he stealthily scoots himself sideways to the next chair at the dinner table toward a desired object. When he is in a particularly defiant mood, and knows he is in trouble, he will walk himself into time-out.

At five years old, he still needs almost constant supervision. There is still a baby-gate across his bedroom door. When they still lived with us, many times I was startled awake because he often flung open his door at 2 a.m., ready to begin the day. If he is overly tired or frustrated, he clears the immediate area with a sweep of his arm, or tosses it all straight up in the air.

I am not involved in Memphis’ education or his daily care. I hear about his struggles when his parents have time to update me. This is very strange for me; I was always the hands-on parent. Once upon a time I was an at-home mom, but my children are all adults now, and I have since I moved onto my own time-consuming career. Consequently, I am often ignorant of his health or developmental issues or even which school he is currently enrolled in. I didn’t have his heart defect memorized; I had to ask my son. My ignorance doesn’t preclude the worry or heartache that is just as strong with my grandson as it was with my own young children.

My Little Man has my heart. Despite his delays, and my worries, I trust Memphis’ tenacity and strength. And I trust my son to make sure Memphis gets the best care, education, and advocacy. Thankfully, both My Little Man’s heart and mine are in good hands.

 

Ginny Baugher-Buccelli holds an MFA in creative writing from Antioch University. She has published essays and short stories in zaum 8, Storyscape Journal, the Fine Line Anthology, and Vintage Voices: A Toast to Life. When not writing creatively, she summons insightful and very challenging essay prompts from the depths of her soul to nurture the educational aspirations of her community college composition students.

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1 Comment on Essay | My Little Man’s Heart

  1. Thank you so much for sharing about your little man. I can feel the love for him jumping off the page. ❤
    I do have to note one objection: the term “Down kids” is pretty offensive. Please consider changing to “kids with Ds or Down syndrome”.
    Until our kids are old enough to self advocate and tell us if they prefer identity-first language, using people-first language is usually the best route to take.

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