A very dear friend has given me her permission to print this here, after reading the post that I wrote about babies with Down Syndrome. She has a child with Down Syndrome herself, and I’m honoured to have her her perspective represented here. Plus, she’s the blog’s first guest blogger!
Thank you, Tinks, for sharing your story. I’m in awe of you.
Give a hug today—to your child, your spouse, your friend, a family member or your co-worker who’s having a bad day or just because you can. Hugs are free. And one small moment, one small touch can mean so much…
It is an eye-opening, life-defining moment when you are afraid to hug or hold your own child. My youngest child, Nicholas, was scheduled for heart surgery on January 8, 2002. The night before the surgery, I went to see him in the pre-surgery unit of Driscoll’s Children’s hospital in Corpus Christi, Texas. At two months old and eight pounds, Nicholas looked so small and frail, lying in a hospital bed, hooked up to what seemed like every medical device possible. I didn’t want to hold him because he had a heart catheter attached to his right leg. I was terrified that I would somehow dislodge it but the nurse insisted.
Now, as I reflect back, I understand the nurse’s insistence (and wisdom) in knowing but not saying, that this might be the last chance I had to hold my child while he was alive. He said I needed to hold my son as the next time I would see Nicholas would be after surgery and I wouldn’t be able to hold him again for a few days. The nurse gently placed Nicholas in my arms and he peacefully slept. We sat quietly, Nicholas and I, among the cacophony of sounds from all the monitors in pre-surgical unit. I silently prayed, wondered, and asked—Why this child? Why me? Would God give me this child only to take him back a few short months later?
After handing Nicholas back to the nurse, I returned to my room. I couldn’t sleep as restless thoughts kept me awake. Did I hold Nicholas long enough? Had I held him enough from the day he arrived home until now? I had lost six weeks of bonding with him as he went straight to the NICU unit on the day he was born. Though I had spent almost every day of those six weeks in the NICU with him, had I held him enough when I was there? I had two older children and I had to balance spending time with all three children. Had I held them enough? I don’t remember. But babies and children are as tough as they are fragile. Nicholas flourished in NICU and at home during the weeks before his surgery. We all survived, adjusted, adapted and life went on as normal as possible until the day of his surgery arrived.
The morning of his surgery, I went to see and touch him moments before they wheeled him away, and I cried then. For the better part of five hours, I sat alone, in the waiting room, with my thoughts. My (then) husband couldn’t get there before 10 a.m. as he was taking care of our two older kids. William went off to school, and Sydney was to stay with our friend Helen—who literally became Sydney’s second mom in the weeks after Nicholas’s birth—God bless her. (Helen, I mean, and yes, Sydney, too) The attendant (God bless her, too) in the waiting room, after realizing I was alone and unbeknownst to me, called the hospital pastor. He came and sat with me, held my hand, said a prayer, and offered words of comfort and reassurance that I didn’t know I needed. God really blessed me with so much during this time. I had sent out an email to friends and family, requesting to have Nicholas put on prayer lists. But those prayers, as it turned out, weren’t just for him—they were for me, too. I wasn’t alone during those five hours. Throughout the surgery I was calm, because I know now, that everyone was holding me. I felt the warmth, the love and hugs of people embracing me. And I knew—God wasn’t ready for Nicholas yet. I needed him more—probably to teach me patience–but more than likely—to learn how to hug—just because.
At noon, the surgeon came in to tell us that Nicholas was in post-op, the surgery was a success and that he (Nicholas, not the surgeon) was doing fine. No complications, no problems and we could see him soon. All I could think of at that moment was—this guy (the surgeon, not Nicholas) was in the Discovery Channel series “Saving Babies”—so what could go wrong? Nicholas had the best there is.
A Part of Nicholas
There’s an eight-inch scar in the middle of his chest. Two smaller half-inch scars dent his stomach, above his belly button, one on each side. Faint tiny scars, now barely visible, are on his upper right leg. There are moments when he lifts his shirt in public, mostly to annoy me, and I wonder, at times when if someone sees those scars—what will they think? What will they say? Those scars are a part of Nicholas as is the condition that they resulted from. Nicholas has Down Syndrome and the heart condition he was born with, is one of the most common heart defects of Down Syndrome. One of the valves in his heart didn’t close properly and needed to be repaired.
But those times of wondering what people will think are now few and far between. As Nicholas grows older, these scars seem to get smaller and I don’t noticed them so such anymore. But they do remind me in those small quiet moments of what I could have lost.
Today, Nicholas gives hugs, freely and often, and to everyone. And to me, especially when he knows he’s been naughty. But many, many more times, when it is just ‘because.’ He knows, without knowing, how effective and affecting a simple hug can be. When life becomes too overwhelming too handle, I cry. (Seems to happen a lot more these days) And it is Nicholas who gives me a hug (and a tissue). These hugs remind me that there is nothing I can’t handle even when I think I can’t. He knows I can. And his ‘hugs—because’ (sometimes even of the strangling-type) are such simple gifts which can be shared-given and given back. So give a ‘hugs-because’ today—just because you can.