To be human is often to be misunderstood. To be human means we often misunderstand.
A few months back I posted this:
The picture still makes me smile. But not everyone. I found a little message in my inbox: ”This poor child needs to be let go. What kind of quality of life does he really have? None. You need to cease and desist all the Jesus and gospel thing and be realistic. Seriously.”
Ugly words. And to use a word in its proper and accurate context: truly stupid (having or showing a great lack of intelligence or common sense) words.
I didn’t lose sleep over it — I’m too grateful to God, too weathered to be bothered, and too busy to have time to mull on it. But as it popped up in my inbox again, I wanted to draw the curtain back. Not out of self-pity, but out of admiration for my son’s courage and gratefulness for God’s provision.
I think when people see children with lots of supportive equipment there is a quiet assumption that parents just can’t let go. The challenges of care and decision-making for parents and families with children with medical complexity are difficult. Difficult decisions must be made, and as treatments and medical possibilities advance, the wrestling and agonizing over the ethics of giving or withholding, trusting God, and feeling the weight of decision-making in your hands increases.
It is quite easy to zing messages to people, make quiet assumptions, and know what you would do in hypothetical situations. It is quite another to be the one who has to tell the doctor the decision when your child is slowly suffocating in your arms. It is weighty. It is heart-rending. And every decision, every season, every growing consequence of a choice is felt. More than felt — it’s lived and experienced every day by the one you decided for.
There’s the decision of providing nutrition for your child via a feeding tube vs. watching them slowly starve because they cannot swallow. The response of resuscitation after going hypoxic because the airway has collapsed, again. The introduction of a little white tube “tracheostomy” into the neck to prevent future oxygen deprivation and airway collapse. And so on.
This is the beginning of living with medical complexity. But to Darryl and I, it was just what was as parents of our son. There were no other options, no easy decisions. I likened it to holding your child’s hand while they dangled over the Grand Canyon, in agony. We held him with open hands, expecting the Lord to take him. He endured. The Lord preserved his life, regardless of our pleading to take him. Calvin woke up the next morning and lived courageously through the next crisis and the next. And it was me and Darryl standing there, that God put there, to do all the things: suction, feed, love, sing, change, treat. I wanted him to live with all my heart, but I wasn’t sure I could endure what his life required, this hovering between life and death.
These things might be startling to read. They are more startling to live.
We lived every day for eight years with one main goal: to keep Calvin’s lungs empty enough to breathe that day. I nearly lost my mind. But we had decided we were not going to a ventilator. After all, didn’t that represent holding onto Calvin’s life at all cost at his expense? As the ethicist Jim Greer counseled us: “We are always called to prolong life, but not to prolong death.” He leaned back in his chair, quoting from Revelations to us. We wept.
When I shared this with the ICU doc, he looked at me: “Kara, if you go home without a ventilator, it’s not like a switch. He will suffocate slowly and suffer for the next year. The only thing that will help is morphine endlessly.” I held my son in my arms and his eyes were looking up at me. So trusting. We cried out to God. We sought counsel. We made a decision, one we did not anticipate but realized the necessity of. We went home with a ventilator.
I feel like I’ve shared too much already. But I want you to know. I want you to know the struggle of the medically complex family. Not to have pity, but to help.
As a Christian, I want to ask ethicists, doctors, and specialists who fear the Lord, value life, and yet understand that intervention is not always the right answer (but also recognize when it is) to come alongside families. How can you contribute? I’m grateful for the emerging work I see. Below I’ll list the few faithful voices I’ve found, but even then, most of help in this area is focused on elderly parents or adults with an acute disease. We need more.
We are a growing population and right now, the secular world has a very poor answer: “There is no right or wrong answer, the right answer is what is best for you.” I’ve heard this misleading and untrue statement too many times to count, and all from brilliant docs. Skilled and compassionate, but lacking an ethical framework founded on biblical truth rather than a subjective and relative understanding of reality and meaning.
I think the sender of the message would have stopped reading by now, and maybe you have too. (Talk about “being sorry I asked!” ;)) . But I hope pulling back the curtain just a little gives you a pause, causes you to pray, and motivates you in whatever capacity you have, to care for families with medical complexity.
Much Love,
Kara
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As a nurse who has years of experience in home care I have seen both ends of life’s spectrum. The decision to stop treatment at the end of life. And the decision to continue at the beginning of life. Your son is loved first and foremost by God Almighty. You have surrendered him to Him. All decisions after that are made in peace. Not in ease. Not in ease for you, your husband or other children. in peace. In joy. In love. Our lives are not to be what makes us happy or is easiest, but what glorifies God. Hummmm how does this bring glory to God. I can’t answer that. You can, in a million ways, God shows His majesty in your life. There you find His glory. Something the “hurtful poster” will never comprehend till Christ softens their heart. Thank you for sharing.
Very well stated! The Lord is giving you wisdom for each situation and Calvin is a beautiful living example of what love does for the severely medically handicapped.