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Sheila Hagar: Finding gratitude in the heart of a daughter

Walla Walla Union-Bulletin - 11/29/2019

Nov. 28--The last time I wrote about Strong Hearted Girl, it was with unbridled joy. My kiddo who lives with brain damage had gotten her first real job, and everyone was ecstatic.

This is not that kind of story.

You already know half of my six adult children have permanent holes in their brains because of prenatal exposure to drugs and alcohol -- it's called fetal alcohol spectrum disorder, or FASD.

Their birth mom didn't know. Even if she had, her mental illness had to be medicated or no one was going to make it through a pregnancy. So here we are.

I've written a lot about FASD in the past decade. I won't rehash all of its horrors, but if you're unfamiliar with this totally preventable birth defect, please look it up. Suffice here to say the disorder is a thief of joy and life.

Strong Hearted Girl -- I'm going to do us a favor and shorten that to Strong -- was initially my child most affected by FASD damage. After coming to our house at age 2, she had to leave at age 10 for the safety of all.

Despite her tiny frame, Strong's violent outbursts were legendary in our house, at school and in the neighborhood by the time she'd descended into dangerous bipolar behaviors. Two years, three treatment centers and at least a dozen drugs later, things remained the same.

When she was 12, experts suggested lithium. Lithium is a psychiatric medication known for its broad and effective coverage of manic symptoms, including the anger, aggression and poor judgement that made treating my daughter a terrible challenge.

Lithium was the best chance our little girl had to leave residential placement and live within a community, they said.

It's also hell on organs, it turns out.

"Now, Mr. And Mrs. Hagar, there is some reduced life expectancy with long term lithium use," we were cautioned.

What did that mean? That Strong would live to be 70 instead of 80? Maybe 60 instead of 70?

You understand, there was no choice. This magic drug could free Strong from the prison of her mental illness. Not cure it, of course, you can't fix missing brain tissue. But maybe calm the mania enough to give my girl some sabbatical from the demons she fought daily.

We said yes, try lithium. Try anything that offers some kind of life.

It did, too. After years of living in group homes, Strong was able to move into independent-but-supported living two summers ago. She got that first job and then another. She bought a dandy of a dog last Christmas, a black lab named Arlo that took every penny she'd saved. Strong said goodbye to a long-term relationship when she understood it wasn't healthy and put self care on a front burner.

Then came May. Strong had been vomiting nights, too nauseous to go to work some days, so it was off to the doctor.

But nothing to worry really about, surely. We'd seen so much worse.

When I'd agreed to put my child on the highest adult dose of lithium, I couldn't have guessed that "shorter life span" would come knocking just 13 years later.

The eventual diagnosis was chronic kidney disease. The numbers that sucked our collective breath away indicated Strong's kidneys were functioning at 34%.

How could this have happened without warning?

My kid got real serious. With the support of her care team, she dropped her lithium dose. She stepped up her ongoing weight loss -- 60 pounds in the last year -- changed her diet and became more physically active.

It's safe to say we were looking forward to the August appointment with the kidney specialist. With all of Strong's work, it seemed likely she'd stabilized, at the least.

Those test results showed her kidneys are now functioning at 21 percent. A second opinion at Oregon's largest hospital confirmed the grim news.

It's too late for any reversal of the disease, the damage is just too severe.

We don't know when, exactly, but with another small numbers drop Strong will go on dialysis for the rest of her life. Three times a week forever.

As long as we can make forever last, I mean ... statistics are not favorable, that's a hard truth about kidney disease and dialysis. We hope for a chance at a transplant, but again, the numbers suck.

I called my girl Tuesday, my voice traveling 300 miles.

"Should we try to do some kind of Thanksgiving column?" I asked, woeful as Eeyore, laying my head on my desk as we spoke.

"Can you find anything to be thankful for right now?"

Strong had to turn down the radio before she could answer me. She was blasting a Christian music station on her daddy's radio, the one I gave her after he died.

"I'm thankful for the support I have," she said with a good dose of cheer, naming her crackerjack program manager, The Amazing Bre.

Bre has been a rock for our family. I don't know how she juggles her responsibilities, including being a mom, but she's always there for us. Yes, I'm thankful for Bre, too.

Strong also cherishes her online support group, where she's talked with people who have lived on dialysis for years and years. They give her hope.

They give me hope, too.

Me, I'm here on the other side of the state, shaking a fist at the heavens for the monumental unfairness of this. A baby born with the mistakes of her mother now forced to pay an even higher price than lifelong disability?

But Strong, she doesn't see it that way.

"I'm thankful I'm still alive, that I have one more Thanksgiving to look forward to."

The battles she's fought her whole life -- to hang onto sanity, to not self-harm, to lean on others instead of swatting people away -- those are the experiences she needed to do this now, she said.

"I don't really feel sorry for myself. It's just something I have to go through. I wouldn't want anyone else to have to go through it."

And this is why I call her Strong Hearted Girl. This is why I'm thankful for her.

Sheila Hagar can be reached at sheilahagar@wwub.com.

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