Never a Burden

Recently, during a casual conversation with my daughter about personal fears, Lorie revealed that being a burden has been a lifetime concern for her. Last year after her brain surgery, that fear became especially real. During her initial recovery, she admitted she’d despaired over why she had survived the transplant only to suffer this debilitating setback. Everything familiar had changed. She no longer knew who she was.

In retrospect, Lorie had been struggling with mild depression. She was tired of fighting to survive. Though strength had abandoned her, thankfully a subconscious determination to live took over. This clearly wasn’t the time to remind her that she had once again defied all odds by surviving a surgery so few do. She was simply tired of it all.

Now, a year later, I replied with my predictable placating message that she could never be a burden and her getting well was always all that mattered. As true as this is, it wasn’t what she needed to hear at the time. She’d been blindsided with this brain infection just when her transplant recovery was in full gear. With no memory of what had happened, the image staring back in the mirror seems so unfamiliar.

Even though she is rapidly getting back to her old self, obviously the matter of being a burden still weighs heavily on her. What I wished I’d said was that it’s impossible for children to be a burden. Becoming a burden is a universal dread everyone feels from time to time. As parents of congenital heart patients, fear has become part of our lifestyle too. Watching Lorie struggle both physically and socially has always been distressing, and of course I wished it could be different for her. Through it all, she persistently reminded me it was the only life she knew and she felt blessed every day.

I feel blessed too. She’s taught me resilience and strength and fortitude. She introduced me to a world I never dreamed I would enter and as a result I like to believe I am more empathetic and tolerant. I’ve gladly adjusted my life around her needs whenever necessary, and both of us always emerged stronger and closer. None of this could possibly be construed as a burden.

Before her transplant I willingly moved to Toronto with Lorie for six months, a move necessary to ensure she would be strong enough and close to the hospital when the time came. How does that saying go? “It was the best of times, it was the worst of times.” Despite missing our families and home while living under the ever-present shadow of her failing heart, we actually had a great time living in the city as “roomies.”

Did I ever view this as a burden? Never! I only felt gratitude to be in a position in life when I was able to do this.

As a parent of a child with a serious heart condition there were certainly times when I wanted to run away and pretend that life was different. There were times when I wanted to put my needs and wants first, and I am sure I did. There were endless heart-wrenching times when I held my daughter’s hand during painful procedures or sat for hours and hours in waiting rooms praying for the doctors to deliver the message I wanted to hear. Even though they always did, there still remained that dreaded 48-hour post-surgery countdown that would determine everything.

Even though a CHD child may at times appear to be a burden to onlookers, every parent knows that a child in need is never a burden. There is one burden, however, that we all carry. That is the fear of loss. It’s those debilitating fears of losing a beautiful spirit who fought so hard and for so long to survive that’s devastating, not the caring for them. Any fear far outweighs the tremendous joy our child brings to us and to the world. The rest is immaterial.

All of this is what I wished I would have told her at the time. My heart tells me she knows, but still, every so often, my mind wonders.