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The Unexpected Gifts of My Son's Battle With a Heart Defect

Twenty years later, the details of Christmas 1996 are blurred in my memory. Partly because of the expanse and distance of time, but mostly because during that time, our emotional and physical energy was concentrated on our son. We were constantly by his side, consumed by his fight for life.

David was born in August of that year, a full-term, typical¬†weight, healthy in utero little baby boy, who without any preamble of¬†warning,¬†arrived in the world a dusky blue and not breathing. Soon after his birth, my husband and I were told that not only was he born with Down syndrome, but he has also had a serious heart defect, tetraology of Fallot, in which his heart had four flaws ‚ÄĒ a diagnosis which many kids did not survive. A month after his birth, he had his first open heart surgery.

For a while, it seemed like all would be OK. Then each day, he got a little weaker, something the doctors called ‚Äúfailure to thrive.‚ÄĚ We spent more time in the Neonatal Intensive Care Unity, NICU, than we did at our home. ¬†It was clear that David wasn’t doing well, but what¬†wasn’t obvious was the¬†course of action to¬†improve his rapidly weakening health. By December, along with a failing heart, David had little physical stamina, wasn’t eating, and had respiratory issues.

Then one morning, close to Christmas, while I was at his hospital bedside, he went into cardiac arrest. His heart simply stopped beating, he quit breathing, his eyes drifted shut, and his body went slack.  The care team went into fast action, reviving him, bringing his heart back to a rhythm, and once again saved his life. That moment of his complete stillness, the quietness of his little self lying on the hospital bed still haunts me.

Feeling lost, driven only by hope, Christmas became my beacon. I remember thinking, without logic or reason, that if David could live until then, somehow everything would be OK.

I know we had a tree that year. I am sure we decorated it with lights and ornaments, and exchanged presents, possibly even spent time with friends and family, but the details are lost to me. However, what is very clear and distinct, even now 20 years later, are the unexpected gifts we received that Christmas season.

1. The gift of unfailing love and support from family and friends.

This was a time long before social media, which meant we were often on the phone and
talking together in person. In a hospital waiting room, you have nothing but time. When we felt up to sharing details, people listened. I will always be grateful to those who let us talk through our emotions and our doubts and our fears. I remember long conversations with parents, siblings, co-workers, neighbors, new acquaintances and longtime friends. I especially remember our daughter Laura, who at a year and a half, even though she spent many a time in a hospital playroom instead of her own room, already loved her brother unconditionally. Her first word was DeeDee, her own derivation of David’s name. Laura has since grown into a young woman who is a strong advocate for disability rights.

2. The gift of compassion and empathy from hospital staff.

The doctors, the nurses, the technicians, all who spent time away from their own families at Christmas to care for ours. It’s truly humbling to place your child’s life into the hands of others, letting them doing for your child what you can’t. When you are feeling inadequate, there is nothing more comforting than someone who tells you they are there to help. Hospital staff are truly unsung heroes. I was particularly grateful to David’s cardiologists. Even though they had operated hundreds of times on babies in similar circumstances, they treated us with only compassion and empathy, recognizing that for us this was all a first. Last summer on an annual cardiologist visit, tears came when I saw a memorial tribute to David’s surgeon on the waiting room wall. I will always be so grateful to him.

Another gift was the families we met in the hospital. Having a child struggling for life creates powerful bonds. In particular, I remember Anna’s parents. Anna was 18, a survivor of tetraology of Fallot, who had returned for heart surgery to accommodate for growth. When they left the hospital after a successful recovery, her mom hugged me close, looked directly in my eyes, and told me she knew in her heart that David was a warrior, just like her Anna, and he needed me to believe in him.

3. The most unforeseen gift was David himself. 

Despite the odds, he lived. Through it all, through everything he endured, the surgeries, the pain, he continued to smile that big wide smile. He paid attention to everything he did, always keeping his bright eyes on us. It was like he knew he needed to send us his strength. His heart continued to beat, he continued to breathe in and then breathe out. Each year he gets stronger and stronger. Today, what remains of those difficult first weeks and first years are the physical scars of three open heart surgeries, a healed incision at his neck from a tracheotomy, and a line at both his stomach and shoulder from the installation of a pacemaker, along with a feeding tube. Those scars give testimony of how lucky we are that he is still in our lives.

Twenty years later, it’s rare for me to think about Christmas 1996, but it’s also important for me to always remember it. Its unexpected gift is being reminded that all life, in whatever form it’s given to us, has beauty and dignity. That meaning and purpose comes not from life being easy and safe, but from how we react to the challenges placed before us.

As writing about this memory comes to a close, the gift I share with you is a reminder that no matter what life gives you, never give up. Hope is a powerful thing. And always, always believe that anything is possible.

Every time I look at David, I know I do.

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