Caring for our child with special needs has shown us that love demands sacrifice, and it's worth it
As a society, we've forgotten how to love in such a way that unconditionally puts others' needs before our own
This is an opinion column by Jason McAllister, whose oldest daughter lives with Trisomy 18. For more information about CBC's Opinion section, please see the FAQ.
I remember it well. That room. The silence. The anticipation. The doctors, nurses and social workers gathered around that table.
"Her diagnosis is incompatible with life."
Those cold, haunting words just hung in the air. I saw my wife's eyes fill with tears, trying to grasp and understand what was just said to us. I remember being in disbelief in that moment. Surely they were wrong. She seemed so healthy. Perfect.
The test results showed that our daughter had Trisomy 18, a genetic condition that results in an extra copy of the 18th chromosome. The survival rate is not high — it occurs in roughly one in 5,000 live births, and only five to 10 per cent of children with this condition live past their first year.
Our beautiful and innocent daughter, Joelle, was dying. Not of her own fault. Yet, she would have a short life and be severely physically and mentally disabled.
Joelle was born with two holes in her heart, sleep apnea, a small cerebellum, and digestive issues that require her to eat entirely through a tube placed in her stomach. She is also partially deaf in one ear and allergic to milk.
When we found out something was amiss during the pregnancy, we were given the option to abort.
For our family, this was never a consideration.
My faith plays a strong role here. As a former Christian pastor, I believe all children are worthy, regardless of whatever special needs they may have. Our value isn't dependent upon our size, our ability to contribute to society or even our viability. Rather, it is dependent upon who God says we are.
But the reality is that no one wants their child to be born with a genetic condition or disability. It is frightening, exhausting, all consuming, expensive and inconvenient.
When she was born, the medical team advised us on palliative care options for Joelle and told us to prepare for her death. In what was probably the most difficult conversation we have ever had, we told our older children that their sister was likely going to die at a young age.
But we've watched them grow up with a sibling who requires 24/7 care and it has taught them to have significantly more compassion and empathy for those who are different.
We, as parents, have also grown. Over the past three years of caring for our daughter, my wife and I have learned that love demands sacrifice.
Recently, I resigned from my position as senior pastor in Alberta and we moved our family to Prince George, B.C., where our extended family lives because the truth is, we can't do it without their help.
This was difficult. We loved our home and our life in Alberta. I had to make the decision to leave my ministry of 12 years and change careers in the midst of a pandemic.
Listen to the interview with Jason McAllister on CBC's The Early Edition:
I truly believe that we as a society today have largely forgotten what it means to give of ourselves in a way that costs us. We have lost sight of what it means to love sacrificially and unconditionally — to love in such a way that we put others' needs before our own without expecting anything in return. It is a love that is always seeking the highest good for the other person despite any personal cost.
It is all too easy to reject these children with disabilities under the guise of "not extending their suffering," because in reality we are unprepared — perhaps afraid — of the work and toil that comes with raising someone with special needs or severe developmental delay.
Our daughter turned three this past June. We refused to resign her fate to the morgue. We love her so much. We decided that her life was just as valuable as that of her siblings and that we would do everything in our power to fight for her.
When we were debating whether or not to go ahead with heart surgery for her, we knew we'd do it because we would have made the same choice for any of our kids.
She gives me hope and she brings an immense amount of joy to our family. She lights up a room and brings laughter to those she encounters on a daily basis. Our children have learned about people who are different from them, as well as of the fragility of life.
Her life, like all those with special needs, brings out the best in us.
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