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?
How very true. Baby Joseph’s are such a witness to us all. I would love to thank them. THank them for the gift of such a valuable life in joseph, thank them for being examples of true earthly parenthood, and wtinesses to the fact that we are only that as parents, earthly parents. All children belong firstly to God. Bless this family – and bless you for sharing this story on your blog!
Great post
I would tell Baby Joseph’s parents that wow, that’s nice the hospital wants to keep your child. but there’s the key word, YOUR child. Pack that kid up and get him home. Screw the hospital. Call hospice and get an advocate. After the baby is home and you’ve had a chance to be with him, call a lawyer and address any issues associated with the hospital.
I don’t take kindly to other’s telling me what to do with my babies. Plain and simple. lol.
This just riles me up as a mom and a believer that we all have basic rights and as parents we have the rights of our children to protect.
Have a great week!
I would say this: God’s enormous love and strength will hold you up and keep you together forever, even after Baby Joseph has left this earth. God knows your trials and will walk with you through them, giving you comfort, courage, and calm.
You cover so much of what goes on in people’s minds during these hard times. When to let go. Who gets to decide. What is the best for the child, the most comfortable, where is the love and grace? And, yes, no matter what the age of the person dying, we want more time.
Peace, and see you soon.
Mary
So sad. My heart breaks for baby Joseph’s parents. I agree that the better thing would be to let them spend their final days together as a family and according to the family’s wishes.
Holly, what a nice thought, to thank the parents for giving this child life. 🙂
Bonnie, I think your feelings toward this situation are very natural. God put in us parents a protective heart for our children. When that right is challenged, it is very difficult to surrender, nor should we do so easily, I think. We do know our child’s needs best. And of course, everyone deserves to die in the most dignified manner possible.
Jane, you always have such beautiful Christian wisdom in your responses. Thanks!
Mary, if only I could actually provide easy answers to those difficult questions, right? (Yes, see you soon!)
And Shannon, hey, where’s the pink hair? 🙂 On a more serious note, thanks for weighing in, Sunshine. 🙂
Roxane, this is very close to home for me as in utero, my daughter was supposed to have a rare, fatal genetic defect that would have killed her very soon after birth.
Thank God for answered prayer and that cup passing me by when she was born healthy, but I received a valuable brief glimpse of what life might feel like for parents in this predicament.
I have tremendous respect for their strength. And I take comfort in knowing that our separations will seem brief, in the end.
Rosslyn, thank you so much for weighing in! How scary that must have been, and now, look at that sweet thing, so vibrantly here and doing so well? I really, really love your last line about brief separations. The key…is about keeping things in perspective, and as Christians, we can do that on a much broader, more whole scale. We are so blessed!
I hear your heart about having just “one more day” or “one more hour.”
You raise a good question when you ask: “At what point do you surrender, and how?”
As believers, we can trust that all of life is really in His hands. But that moment of true surrender is so hard. One that God the Father experienced Himself when His Son died.
I’ll be praying for Joseph and his family.