When Jana and Crys pinned me down and insisted that we dedicate April (which is, randomly enough, the month for EVERYTHING from child abuse awareness, sexual abuse survivors, Autism, and National Frog Month) to donations, I was skeptical. I figured it would be all *crickets* when I begged you, The Band, for your donation stories.
I mean, not everyone is walking around with one kidney and half a liver...right?
Turns out, Jana and Crys were spot on. While not everyone is, in fact, walking around without all their organs, there is a lot more to donation than simply organ, blood, bone marrow, and tissue donations.
I hadn't even considered that I, in fact, have not one but TWO stories (in one!) for our donation carnival.
Thanks, J and Crys for proving me wrong. AGAIN. I deserved it.
"Becky," my husband said softly, yet urgently, trying not to allow the panic to creep into his voice.
He was holding our daughter, my precious new baby, a look of horror on his face.
"We need to take her to the lab over by the mall," he informed me. "The doctor just called."
"Why?" I groggily asked, the gorge rising in my throat.
"We need to get her blood-typed and cross-matched," he told me sadly.
"Didn't they do that at the hospital in the NICU?" I asked, hoping to avoid the amount of blood they'd be taking from my nearly eight pound newborn. I couldn't stand the idea of her being poked...again.
"I don't know," he answered honestly. "The neurosurgeon ordered it for the..." he trailed off. "You know."
I did know.
In a few short days, I would be sacrificing my two week old daughter to the OR table. I wasn't sure if she'd live or die. There are no sure-things when it comes to neurosurgery for a newborn.
I began to weep, which hurt my already raw face, "I can't...Dave, I can't go."
I began to sob into my pillow.
"It's okay," he said, buoying me with false happiness. "We can go. We'll be FINE."
I sobbed harder. What a fucking coward I was. I couldn't even take my poor daughter to get her blood drawn. What kind of mother was I?
The kind, I don't hesitate to answer, who was nearing a nervous breakdown, who was about to put her daughter into the hands of a surgeon to fix her birth defect - her very RARE birth defect - an encephalocele.
Do me a favor, The Band, and don't Google it (you don't want to see pictures). Or, if you must, let me tell you that to be born alive with an encephalocele is a rarity. To be born alive and seemingly neurologically intact is even more rare. There are no statistics for success in Amelia's age bracket for cranioplasty and skull repair. There are no organized marches for encephalocele cures, no encephalocele foundations - it's rare and it's bad. It's FUCKING bad.
And being a trained nurse, well, that made matters worse. I knew what the condition was before she was officially diagnosed.
I knew she would be going under the knife, that piece of brain matter hanging jauntily out of the back of her head snipped away. An implant would be put in to fuse the back of her skull together - as it should've been already - to prevent possible re-herniation of skull, brain tissue, and meninges.
I'd have given my own skull for the chance to take her place on the OR table.
The day of the surgery dawned far too soon. I was almost serene that morning, resigned to the fate we had ahead of us.
A surgery that was projected to take six to eight hours was over in less than one. Ebulliently, we listened to the neurosurgeon who, for the first time since I'd grimly met him, smiled. He told us that the surgery was a success and we'd soon see our girl, who was in the SICU awaiting transport to the PICU.
In a bizarre twist of fate, the award-winning children's hospital I worked at when I was a practicing RN, BSN, had opened a satellite unit near our house. My daughter's gown bore that very same logo I'd seen on so many other children.
He finished with, "We did need to transfuse two pints of blood into her. She lost a bit of blood during surgery."
I've never been able to find the person who did that - the person who selflessly gave my daughter life. Who had, out of the goodness of his or her own heart, helped save my girl.
And I've never forgotten that the blood that once flowed through her veins, helping her heal from neurosurgery, helping her learn to skip, jump, wiggle and run, as she laughs and plays, was truly the gift of life.
I want to thank you from the bottom of my girl's heart.
That same little girl sparked an idea that lead to this. And in her short life, Amelia has already touched the lives of so many.
Without her...without her, you (YES, YOU!) would not be reading these words because they'd have remained unwritten. You, The Band, would never have heard of a group weblog called Band Back Together because it would never have been created.
I'd never have told you that we are none of us alone, we are all connected, because, well, I wouldn't have known that. You may have known me, Aunt Becky, from my blog Mommy Wants Vodka, but without Amelia, well...
Let's not go there.
So I wanted to end my story about donation with a thank you to each of you who works with us, here on The Band, tirelessly donating your time to bring us more, better resources and help spread the word.
I want to thank each of you who has written for us, or who will write for us. Your words will touch someone, somewhere. And when they do, those words strung together into sentences and paragraphs, linked to resources, they will remind someone, somewhere that we are none of us alone.
We are all connected.9 Comments