...So She's All Right Now, Right?.....

I saw a note on Facebook about a local teen missing graduation because he just got a heart transplant. "Thank God he's going to be all right!" is the general gist of the comments. People have no idea at all how difficult this child's next year is going to be.

People are generally kind, and mean well overall.  But as the parent of a chronically ill child (and the wife of a chronic pain patient), I've come to the realization that many people really don't quite "get it" when it comes to what the word "chronic" actually means.

When people learn of Babygirl's kidney failure and subsequent transplant, the commonest response I hear is, "So she's fine NOW, right?"  It's like the question I was frequently asked when she first needed dialysis:  "Is it BOTH of her kidneys?" Neither of these questions make sense to me, as a doctor.  As a special needs parent, even less so.

"Yes, she's fine unless you're concerned at all about the anti-rejection medications that supress her immune system and make it possible for her to get very sick very quickly and increase her risk of getting cancer.  And transplanted kidneys only live about 15 years on average."  "You mean she has to take those meds for the rest of her LIFE??"  Well....yes. At least until the current kidney fails and she goes back on dialysis and waits for another transplant.

The same thing happens to Hubby.  "You mean the surgery didn't fix your back?"  Well, it un-paralyzed his leg, so he can walk again, but his back will never be okay - that really wasn't what the surgery was for.  He gets asked this so often (and honestly, by the same people over and over) that he doesn't even want to go out.  He's tired of talking about his back. Ask him about the Rumble Ponies or something for crying out loud.

I read this article recently: The Isolation of Special Needs Parents. While the author appears to have a child with considerable physical disability, it applies to us nevertheless.  The part about not being able to REALLY talk about it without sounding as if you have no joy in your life, or don't want to be that child's parent, is very true.  "How's Babygirl?"  "She's doing fine, thank you." is commonly the extent of my conversation on the subject.  I get tired of explaining that she isn't fine in a hundred different ways, and that I'm not always fine with THAT.  Being able to tell truly supportive folks from emotional ambulance chasers has become an art form.

I belong to a group of kidney kids' parents online, and the support is pretty amazing.  Where else can a parent toss out a question about the color and quantity of their kid's pee and get a real answer? Who else can you ask, "Did your kid ever take this medicine?  What happened?" Where else can you go for a list of what you need to pack for a long hospital stay?

It's been more than seven years since she was "all right."  We're just doing as well as we can.

Pray for that teen with the new heart. Pray for his family, for strength for the journey ahead of them.

DeeDee

Lorna Doones and Ball Gowns.....

Babygirl's long struggle with the education system has left us missing some monumentous milestones.  Unlike her many sisters, I haven't had to shop for party dresses (there used to be a website called 10dollarstore.com that was a favorite), or annual spring and fall school clothes.  She didn't attend her 8th grade dance.  HIgh school graduation is still a distant hope.

This past two years, a few co-workers and friends who have kids her age have been sharing pictures:  Prom gowns and tuxes, limos and fancy dinners, caps and gowns.  I'm happy for them, truly.  But it made me understand, a little, how infertile women feel at baby showers:  That's just not going to happen for my kid.  So I smile and say the right things (and sincerely mean them all!) and then grieve for what she's lost.

But Babygirl has a friend from school who hasn't left her behind.  She's graduating this year, and she invited Babygirl to the Prom.

So.  This happened:

Babygirl and I went shopping.  Got shoes, a dress, accessories.  Curlygirl took her for a mani/pedi and makeup, and did her hair (and since I paid for her Cosmetology education, I figure that was about the most expensive hairdo I've ever bought).

Babygirl and her friend got dressed here at the house.  And her friend handed me an envelope for prom photo packages. So while they were finishing pinning curls up on the third floor, I came downstairs to wrestle with my checkbook to see how much I was willing to pay for bad prom pictures.

You never know, ever, when a memory is going to take over an already emotionally-charged day and hit you right in the tear ducts, but:  I dropped back to 2001.  We had just expanded from 2 kids to 6 overnight. We'd needed beds, clothes, everything.  Money was tight, VERY tight.  I had school photo packets in my hands, and needed to be able to write checks, RIGHT NOW, for money I simply didn't have.  My mom found me crying on the back porch, and wrote three checks for $17 so three little girls (two of whom had just arrived and were virtual strangers to her) could have their pictures done.  

I sat with my checkbook and wept for a bit, missing the women who made the hard things in my life possible:  Mom, Grandma, Bobbe - and so many more.  

And then I spotted the package of Lorna Doones.  

Backstory:  I've donated blood all of my adult life, and joked that I really only came for the cookies.  So a few years ago, when the Red Cross switched to Cheez It crackers, I complained.  My friend Marj mans the snack table at the church blood drives, and she noticed.  Last blood drive, she bought a box of Lorna Doone cookie packs, just for me. I swiped an extra pack for the road, and forgot about them.

I hadn't had lunch, dinner was still a long way off, and I was thirsty and tired. I grabbed a can of seltzer an opened my little pack of crumbled cookies and ate and drank like it was communion, and it was:  The communion of Women Who Support Each Other.  A reminder that there are still, and always will be, women friends in my life who would drop everything, do anything, be anywhere.  I washed my face, wrote a check, and went upstairs, saying a prayer that Babygirl will always have that same support.  

She's got a good start.

                                                                                                                                                                 

And that's all I can ask for her.

DeeDee

PS Oh, and that check?  It got left on the floor of the bedroom during the prom-gown excitement.  But it was never the issue anyway, was it?