On lungs and toes and becoming a donor

Yesterday I called my estranged husband and uttered words I never thought I’d say.

“Ok,” I said as if in urgent defeat. “I want to be a donor. If something happens to me and they can find anything usable, do it.”

I don’t know what they’d use. Not my lungs because I smoked for 17 years. I have heart palpitations and a weak valve, so I don’t know if that’s an option. A liver function test a few years ago showed me in excellent health, but 12 years of daily Tylenol to control the Fibromyalgia probably makes it less than prime.

“The only thing that I can think of that works right is my toes,” I mused. I don’t know. The point is if they can use something they can have it.

I won’t go into all the reasons that this is a big deal to me, and why I’ve been holding out. Most of them are crazy and illogical. But I will tell you what changed my mind.

My niece is 14 years old. When she was 12 months old, she was diagnosed with Cystic Fibrosis. A few weeks ago she went in for some tests to see if she should be considered for a lung transplant. The appointment was made months ago. Her doctor from Children's Hospital, I was told, said it was just a precaution. It had become too late for another little girl, Crissi’s friend, and she quickly became too sick to get the transplant. She died last year. So the doctor was feeling jumpy. I could understand that.

But they didn’t even make it through all of the “precautionary” tests. Crissi’s case was critical. Her lung function was at 12%, her blood oxygen dropped to 78. She was admitted to New Orleans’ Ochsner Hospital immediately and quickly put through the committee to get a lung transplant. As of last Thursday she’s approved and officially on the list.

Time is of the essence. Urgent. Her doctor says she’s standing on the edge of a cliff and once she starts falling, they can’t stop the fall. The rest of her body has to remain healthy enough to survive the surgery and ensuing struggle as it fights to reject the foreign organs and compromises with the drugs that will keep it from fighting them.

So I pray, yet as I do I hit walls. I know what we’re waiting for. We’re waiting for someone to die, someone who didn’t know they were going to die.

That’s hard to pray for.

Yet it happens every day, and we all live knowing in the back of our minds that one day it could be us. But we’re waiting for the “right” person to die. Someone who is a match. Someone who has decided that if they died, they want someone else to live on. To benefit from the tragedy. Someone who has been more unselfish than I and became an organ donor.

So if you’re reading this and you have your own crazy, illogical reasons for not being an organ donor, that’s ok I won’t push. Maybe you just haven’t got around to voicing your preference, or making one. Maybe one day you’ll find yourself in the horrible position of having to decide for someone else.

Crissi is a happy, witty, bravely vivacious 14 year old. She should have her whole life ahead of her. Only a lung transplant will give her a shot at that. Some wonderful caring person is going to give that to her. Someone whose life course wasn’t altered by the decision, yet they have the chance to alter someone else’s life completely. I’m so grateful to them already.

I can’t look…

I don’t mind questions about Jaden and Autism; in fact I welcome them. It doesn’t matter if the questions come from the utmost ignorance, as long as the asker’s heart is sincere in wanting to know the answers. It means they care, it means they want to learn.

I also started from the utmost ignorance; television dramas and stereotypes my only education that made me miss what should have been obvious.

One inevitable question, usually asked in halting, apologetic words, is “What about the future?”

This is the question that silences me.

That word has changed for me. Once upon a time to me “the future” invoked a picture of a road stretching out long before us with colorful shadows of might be and possibilities marking milestones.

Now the future is this week. I know what we’re doing this week. We’re going to school four days of the week and going to other therapies on two days. I have waffles and vegetarian chicken nuggets in the freezer, Dominos on speed dial, Lays chips and Chips Ahoy cookies for snack time, because that’s all Jaden will eat. The laundry is done. I’m ready for the future.

But I know that this isn’t what they’re asking. And I can’t say. I can’t even look.

Sometimes I glimpse up, usually unintentionally, and the shadows of “might be” have changed. Hopeful colorful ones are still there but they’re now joined and mixed with scary dark ones. Every time Jaden hits me when he’s mad, the dark ones loom in front of me. Every time he gets distressed and just can’t understand what I’m saying to him, or when I see his neuro-typical peers shun him and break his heart because he doesn’t understand. Or when he gets stressed and loses his words, or starts screaming at strangers to shut up.

I glimpse ugly futures every time I read a story about police mishandling or abusing a person with Autism, because they didn’t understand. Or when I hear about people forced into institutions, or becoming homeless on the streets, or victims of hate crimes, or perpetrators of crimes.

It makes my heart literally hurt, it makes my chest tight, and I look down. I keep my eyes to the ground at my feet.

I can’t look.

It’s not as if I’m ignoring the future. Almost all of my time, energy and money is going towards it. Diligence relaxed would ensure that the colorful shadows die. I’ve found that walking the road seems more like climbing cliffs. I heed the well-worn advice to not look up - or is it don’t look down? Just don’t look. But I’m climbing.

  

I’m reminded often of the scripture “Where there is no vision the people perish.” It is a bit like that. Hope for the future is an essential part of life, even if things don’t turn out as you envisioned them. And I do have a few hopes for myself. I know it’s necessary to be able to keep going. But like every good mother my future is wrapped up in my child’s, and I can't see it.