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.



Monday, July 6, 2015

Forty-six

Ken took Thursday, July 2nd off from work and we packed up the truck to head out to a favorite, secret place over Hatcher Pass to camp. It was my 46th birthday.



He made the tents from Tyvek, with hiking poles as the center. Great for backpacking. No floor makes it easier with dirty boots. And yes, the first day, the mist was that low. We basically camped in the clouds. But Friday morning dawned bright.

Ian and Luke, looking out over the trail.

Mama needed a rest.


 Clare found that cobalt glass bottle at the entrance of an abandoned mine shaft and carried it all the way. It's currently soaking in bleach water.

One of several mine shafts. Ian was angry that we wouldn't allow him to explore inside, even though he had a flashlight, good boots, and wasn't afraid.


We have snow at least 6 months out of the year and a perfect day of July sunshine, but when we discovered a snow field, they screamed, "SNOW!" . . .
. . . and played like penguins.


It was a marvelous trip and I wished we'd brought extra food to stay another night. Next time.

Love, Allison


P.S. ~ It seems that we've entered some family Twilight Zone, wherein, "the whole family is going" now means, "the whole family is going EXCEPT REES AND JOHN." I understand they're old and have jobs and friends but I missed them very much.