Not a pleasant subject, I fully realize, but one some parents will face: the death of a child.
If you haven’t heard the story yet, the bare basics are this: a 1-year-old baby boy in Canada with a neurodegenerative disease is going to die. His parents would prefer he die at home. They know that a tracheotomy would relieve him somewhat and possibly give him more time. (The same was afforded his sibling, a sister, who died several years ago but lived six months after having a tracheotomy performed and being brought home.) From what it looks like, the hospital is sticking to its guns and is not going to allow the parents their final wishes for their child.
I realize the situation is a bit more complicated than what one paragraph will allow, and there are myriad angles and perspectives to consider. But what I want to focus on today is the fact that each day that Baby Joseph lives is a blessing, and as such, especially considering the grieving the parents have already endured, I ask the question: Why not allow them the chance to do what they fervently believe will be the best way for their baby to spend his final months, weeks, hours or days?
When I lost my baby to miscarriage in 1999, I deeply felt the emptiness of my arms and heart. One day more would have been better, I thought. I felt envy creeping in over anyone who had delivered a baby to term, even those whose children had died shortly after birth. How lucky they seemed to me. At least they got to hold their child! Each day more that a person had with his or her child seemed like such a tremendous blessing. I would have done anything to have one more day, even though I know it never would have been enough.
I realize now that even parents whose children die at an older age feel this way. One more minute, one more hour, one more day would have meant so much. Each second of our lives, and those of the people around us, is precious and possible only because of the loving God who sustains us, who puts in motion our every breath. We are not guaranteed tomorrow, not to mention our next inhale.
That’s why this story has become so huge. It’s about one child, yes, but it’s about all of humanity, in the end, and how we view life and its value. Baby Joseph is a microcosm of the rest of the world and how tenderly (or not) it treats its fellow citizens.
If the medical world exists to do what it can to sustain life then I’m not sure I see what the issue is here. Why not just do the tracheotomy and let Baby Joseph go home to die enveloped in the love of his family?
To be honest, I don’t think the medical community is fully prepared to handle such situations. To give them some benefit of the doubt, their training is focused on keeping patients alive. So what happens when that’s not possible? At what point do you surrender, and how?
Please keep Baby Joseph and his parents in your prayers, as well as all parents in similar situations. As a mother of five, I know very well how tangled life can become in day-to-day living alone. But when I consider what Joseph and his parents are up against right now, I’m feeling pretty fortunate.
Q4U: If you could speak to Baby Joseph’s parents today, what would you say?