People kindly say I don't look my age, that I have lovely skin, that the way my hair has turned grey is actually pretty. I don't disagree. Outwardly, I think I look pretty well.
But my soul is crosshatched with lines, wrinkles and scars. I got a few in my crazy childhood, a solid fistful from medical school, and divorce and single motherhood leave a mark or two. Watching your kids struggle with chronic but common childhood illnesses skins you up some. Watching academic struggles caused by a biological parents' drug or alcohol abuse: That's a gut-kick, for sure. Seeing your kids move into relationships of their own, making families, getting their hearts broken and being unable to help at all? Radically painful.
And under and over and around it all plays the music of Babygirl's kidney disease. It isn't that the things that happen to her sisters have been or are small, or even transient: They are enormous, life-changing, permanent.
But perhaps because Babygirl is still home, the day-to-day reality of her illness hovers more. The medication alarms (which the dogs now associate with their nightly treats LOL), the endless pill bottles, the habit of low-lighting to avoid increasing headache pain are all minute-by-minute reminders of our surreal version of reality.
So my soul sometimes sags like an old lady's boobs.
I have to confess that I've spent too much of the last nearly 8 years intermittently pissed about it. I mean, I get that crap happens. I get we don't get to choose. I get, I REALLY get, that God isn't doing this to her, to US, and that He will work with us to get us through it.
But our pastor said something Sunday. Something I've heard a thousand times in my life, but that somehow just sounded.....different....to me this time. He was just preparing for communion, and quoting the passage where Jesus asks his Father to "let this cup pass from me." Jesus knew, REALLY knew before He asked, that the answer was going to be, "No." And he was okay with it. He just..... needed to ask.
I'm not sure why that comforts me so much. Maybe because it's permission, in a way, to say to God, "Look, I KNOW there's no turning back, but you know I wish we could. I'm just glad you don't hold that against me."
It makes it easier to be in my saggy, scarred soul, and be entirely grateful every single day that God gave me daughters who grew up to be my friends, Babygirl included.
Seven years ago today a team of doctors and nurses installed the kidney of a stranger into my little girl, and made her life infinitely better despite the day-to-day struggle. That boy's parent's still mourn his loss every day. Pray for Jorge's family. They will never not miss him.
DeeDee
Monday, February 4, 2019
Saturday, February 2, 2019
The Night Before....
One of the interesting things about Facebook is the feature that brings up memories every year. One of today's was this:
"They called us a 12:22 AM. Babygirl's a match, but they don't know yet if we need to come. I told them to call us if they want us to come. That call would have come in by 3 at the latest. It's not our turn this time. Thank you all for your prayers!"
I posted this at 5:57 AM, February 1sr, 2012 after what I'm guessing was a pretty sleepless night, what with one thing and another. Looking back, I know I packed bags for Babygirl and I in case we really did have to leave for the hospital. She would have been on the dialysis machine, always a death sentence to sleep anyway. I would have been crawling out of bed that Wednesday morning, struggling to face another day after yet another disappointment.
Not our kidney. Not yet. How much longer is the kid going to be on this ride? How many more nights of agony on dialysis?
It turns out: Two more. We had one night to recover, and then we were on the road for real.
There is a clear demarcation between Before and After. For Babygirl, I think the line is between February third and fourth: Between dialysis and donor kidney. Or maybe it was August 22, 2011: Before dialysis vs after dialysis.
For me, the line remains April 28, 2011. That was the day I blithely took my healthy-seeming child to her camp physical. On the other side of the line was the 29th, when the call came telling me just how wrong I was about her health, the day when everything I thought was true, wasn't.
Thinking of that moment can still rip my heart, stop my breath, and make me weak. When people talk about going back to some other time in their lives, like high school or their 20's, I think to myself, "I'd give anything to go back to when she was 9." The problem is, of course, that there would have been nothing to do that would have changed things. But like all of that kind of thinking, perhaps if I'd known what was coming I would have taken the time to enjoy the freedom more.
DeeDee
"They called us a 12:22 AM. Babygirl's a match, but they don't know yet if we need to come. I told them to call us if they want us to come. That call would have come in by 3 at the latest. It's not our turn this time. Thank you all for your prayers!"
I posted this at 5:57 AM, February 1sr, 2012 after what I'm guessing was a pretty sleepless night, what with one thing and another. Looking back, I know I packed bags for Babygirl and I in case we really did have to leave for the hospital. She would have been on the dialysis machine, always a death sentence to sleep anyway. I would have been crawling out of bed that Wednesday morning, struggling to face another day after yet another disappointment.
Not our kidney. Not yet. How much longer is the kid going to be on this ride? How many more nights of agony on dialysis?
It turns out: Two more. We had one night to recover, and then we were on the road for real.
There is a clear demarcation between Before and After. For Babygirl, I think the line is between February third and fourth: Between dialysis and donor kidney. Or maybe it was August 22, 2011: Before dialysis vs after dialysis.
For me, the line remains April 28, 2011. That was the day I blithely took my healthy-seeming child to her camp physical. On the other side of the line was the 29th, when the call came telling me just how wrong I was about her health, the day when everything I thought was true, wasn't.
Thinking of that moment can still rip my heart, stop my breath, and make me weak. When people talk about going back to some other time in their lives, like high school or their 20's, I think to myself, "I'd give anything to go back to when she was 9." The problem is, of course, that there would have been nothing to do that would have changed things. But like all of that kind of thinking, perhaps if I'd known what was coming I would have taken the time to enjoy the freedom more.
DeeDee
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