Monday, November 24, 2008

What does it mean to care for children with special needs?

I was looking after Samantha, a young child who has special needs. It was midnight when I heard her stirring and went to check on her. She was wide awake. It was so quiet that we could hear frogs chirping outside the bedroom window.

I leaned over and whispered "Sam, can you hear the froggies?" A big smile emerged on her little 5-year-old face, Sam, who cannot speak, blinked her eyes repeatedly to say "yes!!" I instantly smiled. That was the first time I had seen her respond to me.

Sam was only a year old when she spiked an uncontrollably high fever which, led to continuous seizures. As a result, she suffered severe neurological trauma. Almost overnight, Sam's health declined further and her doctors at BC Children's Hospital made the call: Sam should enter palliative care and Laura and the rest of Sam's potential family needed to prepare for her death.

"Potential" because Laura and her husband were in the middle of adopting Sam, and death was the last thing on everyone's minds. Laura and her husband had been busy preparing for Sam's adoption. The paperwork had been filed but the adoption had not yet been finalized.

Love for Sam prevailed and persistent family, friends and healthcare workers collaborated in support of bringing Sam home to die. But soon after she was home, she stabilized and since has grown into a beautiful wavy-haired, dimple-cheeked little girl.

Sam faces many challenges in her life; she can not walk or talk and is fed through a tube, and has a shunt implanted in her head that prevents cerebral spinal fluid from accumulating in her ventricles due to hydrocephalus. If it becomes blocked, seizures result.

Additionally, she requires daily medications to manage pain, seizures, spasticity, and immune system and vitamin deficiencies, among other issues. But despite her seemingly negative medical prognosis, Sam was and is still beautiful, resilient and loved.

I continue to be amazed by the contentment that exists in a household that is faced with the challenge of raising a daughter with multiple medical issues. Laura and her husband were presented with a dilemma that many of us could never dream of experiencing. Sam was always in need of a loving family but even more so after she suffered brain damage.

How does a family cope with having to make a decision regarding the fate of a child's life? Did Laura and her husband really have a choice? Laura says no; Sam was always going to be her daughter and as a mother, she has a responsibility to give her child the best life she could.

Even though Laura knows of the delicate state of her daughter and of the potential challenges that lay ahead, she personifies an unassuming calm strength. Laura's attitude is simply that she and her family are blessed to have Sam in their lives.

What is the secret to feeling so positive about something that is perceivably so negative? Perhaps it means facing those things in life that frighten us the most. Perhaps we avoid feeling pain or sadness so we can remain within the safety net of our comfort zone.

Freedom from the burden of the unexpected will undoubtedly protect us from feeling let-down but also deprives us of unexpected moments of happiness. This is the only way Laura can explain why adopting Samantha has been one of the best things that could have ever happened to her family.
And Laura's family and every member of Sam's support network seem to be the best thing that could have ever happened to Sam.

When medicine failed, love picked up the slack and provided hope to Sam and her family. Sam has led Laura to explore her greatest fears and feel the heartbreak that comes with the agony of being faced with potentially losing a child.

But Laura and her family do not see the heartbreak, they celebrate the everyday small things and embrace moments as simple as sharing a smile.

Sam and her family are an inspiration to me because they never forget that they are fortunate to have Sam in their lives.

Love can provide a sense of hope when all else seems wrong. I realized this when Sam and I shared that moment with the frogs and made a brief connection.

Regardless of how brief that moment might have been, I was overcome with a deep sense of love and a hope that has stayed with me.

Anja Purchase is in Simon Fraser University's fall 2008 semester in dialogue: health issues & ethics.


Post a Comment

<< Home