I can remember the moment with an incredible amount of clarity, particularly when you consider I was still heavily drugged. The moment I opened my eyes after the c-section, I focused in on my mother and asked her a question no grandmother should ever have to answer:
“Is she alive?” Did she survive? Have I missed my daughter’s entire life, or is there still a sliver of hope that I will someday meet her?
We knew going in to the c-section that we were choosing to aggressively treat Charlotte Amalie. We knew that we didn’t want to torture her, and we were willing to withdraw care when she had declared that her time here on Earth had come to an end. My very best friend came to visit me the day after she was born, and somehow I was able to push words out of my swollen throat. “We just want her to fulfill her purpose, Kay. If that purpose means she comes for a day, and then dies, we’ll be at peace with that, someday. If that purpose is to live a life full of handicaps and challenges, we’ll be at peace with that, someday. If that purpose is to take life by storm and teach us all the lessons of life, we’ll be at peace with that, someday.” {For the record, nearly three years later, that peace is still slowly coming. Someday. Someday.}
As difficult as those words were to choke out, we meant them. We simply wanted to give Charlotte a chance to live her life.
At the time, we thought that decision was over when we chose aggressive care rather than comfort care. So many times in the NICU, we thought we made that decision; a choice we would never have to revisit again.
And yet, on a daily basis I still struggle to make that choice. I struggle to allow Charlotte to live her life. How much do I protect her? How many times do I let her fail? How much should I shelter her from the harsh realities of her life? How many times do we submit her to tasks she likely will not succeed in, just to say we’re not holding her back? How much of her life is relegated to “special needs” and how much of her life gets assigned to (I hate this word) “normal”?
These are questions I honestly don’t have an answer to; ones I struggle with on a moment to moment basis. I know what my ideal answers are, but I cannot put a finger on my “grounded in reality” answers.
All I know is that I promised her we would not torture her. I promised her that when she was ready to be done, we would let her be done. I did not limit that promise to life and death situations, and I feel a constant pressure to live up to that promise.
But I also promised her life. I promised her I would fight tooth and nail to allow her to live, that I would fight the battle right along side her. I promised I would never let someone tell her what she was or was not capable of, and that she alone could determine where and when her finish line appeared.
Those promises, at times, battle each other. Mediating the conflict is the essence of parenting little Miss Charlotte Amalie.
I suppose, though, that’s simply the essence of parenting. A life long dance filled with guesses, assumptions and leaps of faith; faith that we will not harm our children more than we help.
Faith that we will let our children simply live. Live life to the fullest.
Whatever that might mean.
A way back when shot of Miss Charlotte. April 2011.
An excruciating choice, and it breaks my heart that you have had to make it again and again. Thankfully, Charlotte’s joy for life makes it pretty clear that she is here to stay. Daphne was born at 27 weeks, so there was never any question of treating aggressively. When we were told that there wasn’t anything they could do for her kidneys, she was still quite stable clinically, so I sat by her incubator and we had a “chat.” I told her if she was tired, or in pain, it was OK to go. But that if she wanted to stay, she needed to fight, and we would fight right with her. We’ve been fighting ever since, but she is SO worth it.
Charlotte is blessed beyond belief to have a mother who fights tooth and nail for her. I’m sure that somehow, she already knows that.
Well we all know that Charlotte has taken life by storm (and I think that is a huge understatement)!!! I wish more parents had the wisdom to let their child lead the way. Most of the parents are worried about society’s expectations. The parents of the “take the world by storm” kind of kids expect the, to do their best. Theses kids continually surprise everyone–thank goodness. And change that word “normal” to “typical”–it’s easier to apply!
I love that you honor Charlotte so much in considering the life that she would want. That is humanity. I know a lot of people just don’t get that kind of compassion and consideration. You inspire me to give it to my children everyday in all situations.
-Kahalia
Thanks for sharing these personal thoughts, Amanda. I’ve often wondered about those very questions and how much of a struggle it must be. In the end, I agree that parenting is about letting our kids become who they are meant to be- regardless of who they are or what other people expect of them. That’s the universal struggle of parenthood for sure. Love you lots.
Oh. My. Heavens.
“All I know is that I promised her we would not torture her. I promised her that when she was ready to be done, we would let her be done. I did not limit that promise to life and death situations, and I feel a constant pressure to live up to that promise.
But I also promised her life. I promised her I would fight tooth and nail to allow her to live, that I would fight the battle right along side her. I promised I would never let someone tell her what she was or was not capable of, and that she alone could determine where and when her finish line appeared.
Those promises, at times, battle each other. Mediating the conflict is the essence of parenting little Miss Charlotte Amalie.”
That is so profound.