there is little balance in baby’s struggle

I was standing in line, waiting for a coffee when the clerk smiled at my swelling belly and asked me if I hoped for a boy or a girl. “No preference,” I replied, politely. Handing me my coffee she chirped, “So long as it’s healthy, eh?”

I cringed. I had always hated that cliché, now more than ever. Only days earlier I had found out that my child was not healthy. He would require surgery at birth, if he survived. This memory and dozens more have dominated my thoughts these last few weeks as I’ve watched from afar Isaiah May’s battle for life.*

The tragedy of Isaiah’s situation evokes the most basic instincts of parenthood. He is a victim of circumstances, the innocent baby whose suffering could have been so easily avoided. But instead this is the life he has received and in spite of it, his parents embrace it. That’s the remarkable thing about being a parent. When others around you see the limitations and deficiencies of your child, you only wonder why they aren’t also blinded by his beauty.

But everyone plays a role and Isaiah’s parents have the most difficult. As advocates for their child, they are fighting for his life, using every resource and means possible to hold on to every hope. The physicians are medical professionals, balancing the delicate intricacies of a baby’s welfare, medical ethics, parents’ dreams and the ever-encroaching public opinion. The media, with its 15-second summations of a child’s struggle for life, create a stage for us observers to consider the plight of this young family.

For the parents, this is a struggle of hope. For the doctors, a struggle for ethical balance. For the healthcare system, this is a struggle for economy. For pro-life advocates, a struggle for principle. For the courts, it is a struggle for precedent. For us, the strangers that watch from a distance, it is a struggle for balance between joy and pain. And for baby Isaiah, well, he seems to be the only one not struggling.

I cannot say what I would do if I were Isaiah’s mom. I can only remember the angst and anger I felt during my own baby’s hospitalization.

Nothing could have prepared us for the shock of finding out after our son was born that the medical issues we had discovered during pregnancy were mild compared to the more serious one discovered. We were so distraught and confused at his birth that it took us three days to name him. At first the doctors were non-committal in their assessment, but as weeks stretched to six months, he finally had what would be his most serious surgery. After three more months in recovery, he came home at nine months of age.

No one understands the terrible feeling of watching your baby, helpless and vulnerable, you desperate to help him, yet unable to. For our boy, his nine months in the hospital were filled with hardship, fear and often torment.

He is now nine years old and in Grade 3. He takes swimming and piano lessons and did a couple of stints of taekwondo. He makes Transformers out of Lego, watches every possible episode of Sponge Bob Square Pants and sings himself to sleep at night. He fills the rest of his time pestering his older sisters and begging his older brother to play X-Box with him. We are thrilled with every day he and his siblings have blessed our lives.

We’re happy with what we named him too. It’s an old Hebrew name meaning “God saves.” His name is Isaiah.

St. Albert Gazette | Feb 2, 2010 06:00 am | Dee-Ann Schwanke

(Dee-Ann’s son spent nine months at the Stollery Children’s Hospital and has been in surgery dozens of times.)

* UPDATE: Isaiah May passed away in his parents’ arms on Thursday, March 11, 2010.

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