Thursday, July 23, 2015

Another Death Sentence

Along with I don't care if it's a boy or girl as long as it's healthy, I've come across another sentence that raises my eyebrows and deflates my heart. Here's how I discovered it.

There's a writer that I like. I mean, like so much that I look for her articles and gobbled up her memoir in a single weekend. I was stuck in a medical clinic waiting room a few weeks ago with a son who had a spider bite gone very wrong (He's fine now, after antibiotics, anti-inflammatories, and anti-something I can't remember now.) and flipping through a ladies' magazine. My writer's name caught my eye and I was pleased to settle in with her article about the international adoption of one of her daughters.

About how she and her husband fell in love with the toddler's video: her sweet face, shy smile, little twirls, and halting English, "Will you be my parents?" About how the paperwork process moved quickly. About how her husband got Serious and said: She can't have any health problems. About how my writer scurried to the computer to fire off a breathless question to the orphanage. About how the answer of perfection brought on a sigh of happiness. They would rescue this darling because she  had no health problems.

My heart started to pound and I felt dizzy and clenched my teeth but I completed the article. What if the orphanage director had told them this beautiful child that they "loved" had cystic fibrosis? She'd still be there, of course. They wouldn't bring her home and give her enzymes or hook up her nebulizer with a Little Bear DVD. They wouldn't buy her potato chips and peanut butter cups to help her gain weight and laugh about how great it was to have such a good excuse for keeping chips and candy in the house. They wouldn't hang out with her in the hospital for IV times, doing puzzles, watching movies, or good-naturedly harrassing nurses. Do orphaned kids with CF in former Eastern Bloc nations even have pulmonary care?

I know, I know, if we could order a child up like a burger on a menu (or pick through embryos like picking through trail mix for the candy), we would choose perfection (Which is a joke; we are all perfect in some things and flawed somewhere else). But she actually wrote it down and had it printed with her own name: She can't have any health problems, and the unwritten but necessary conclusion: Or we'll leave her there and pick someone else even though we said we loved her.

I've been fussed at over the internet for being too cheerful about cystic fibrosis. And it's true. I want to combat this culture of perfect humanity or nothing at all. But yes of course it's hard. Yes of course I cry. Yes of course I don't want to consider the death of my children. But neither did my friend who lost her healthy son at 17 from a car accident. Neither did the mother of a healthy toddler who drowned down the road from me. Neither does any mother. It's not just CF, it's life, even when you adopt a healthy orphan. I hate to think of children with CF languishing in orphanages. I'm sick to think of babies killed in utero over those genes. It's like saying my kids aren't worth life and loving. I wish my writer had brought home whatever child reached out to them when they decided to adopt.

 I want to fire off a letter to "instruct the ignorant" writer but it won't do any good at this point; after all, the child is now a mother herself. I will teach my own children, though, and try my hardest to live at peace with all (Romans 12:18).

Clearly, I haven't yet formulated an excellent answer. I haven't yet made peace with my messy feelings. There is still an air of melancholy hanging over my head.

But (!), now I am heading outside to set up the sprinkler and a picnic in the sun to play with my kids (with and without CF). My adult son (who happens to have CF) will probably bring me my favorite Kickstart drink when he gets home from work because he's nice. They were not left in an orphanage. And the world is a better place.

I hope my writer can learn this someday.


  1. This was excellent! I always hesitate with the "as long as the baby's healthy" phrase. It's seems so innocent, but there is that underlying assumption there that makes me uncomfortable. Because I know that even that doesn't matter. i'd take any child God blessed me with. I love how positive you are about your family's journey! Keep it up, more people in this world need to see examples like yours.

  2. Your post reminds me of what a Ukrainian priest told me once, when he found out that we care for medically fragile foster children and have adopted a medically complex son. "In Ukraine, your son would be dead by now." The truth is, leaving these kids behind in some places can be a death sentence. Giving them the chance to have a longer life filled with the love of family is our duty if we are at all able. And you don't have to go far to do this; there are many children right here in our own community who are living lives in the hospital due to no willing foster families. As you have experienced, there is so much joy and life in store, alongside some pain. It's so worth doing, even if it's hard.

  3. Nice post.

    I think it's interesting that you get chastised for being "too cheerful" about CF. It's really the only productive way to go though day-to-day life. The alternative — dwelling on what could or is going wrong — is draining when you don't put it into the perspective of the higher calling of work we are doing.

    I'm a person, though, so my mind sometimes wonders to the seriousness of the unknown ahead of me. As weird as this sounds, I have found cemeteries to be helpful for a few reasons. First, I see markers of vast numbers of people who have lived this life before me, and it's only reasonable to assume they also endured uncertainty and catastrophic circumstances far beyond anything I have known. Another reason is because there are babies buried there. In the "old" section, there are families who buried multiple infants that only lived to be 4 or 5 months old in the early 1900s. I can't help but wonder to myself if those kids died of CF and their parents never knew. Anyway, it makes me grateful that I don't have to visit my babies there. Maybe one day I will, but that day isn't today, and for that, I'm thankful.

    The days we are living now are a great time to be born into. There's a very good chance my girl with CF will have a complete childhood, and at least some of an LEAST. I never want to be careless with the time I have with them or take it for granted, so it's like you so precisely articulate: we are healthier and wiser.

    Thanks for the post and letting me ramble at the end of it :)

    1. I've found the same thing at cemeteries. We have a family tradition of visitng one on Memorial Day and there are so many little ones.

  4. We adopted a sibling p[air, one of whom had some fetal alcohol problems which we knew about. She is doing fine as a young adult, still can't do math but has a real job and likes life. We would not trade her for a 'perfect' child.

    1. Thank you for sharing, too. What lucky kids and family!

  5. Tears through the whole post. Beautifully written!