Miracles
Eight years ago today, Punkish Middle Sister gave birth to her third child, a long-awaited daughter.
I wish it had been just like that—the beginning of one story and the beginning of a life—being able to watch the baby, who I’ll call Princess Girl, grow and change and unfurl like velvet.
But it wasn’t.
No, my niece was born with several complications. Doctors shook their heads and looked grave, prepared us all for the worst. And for years, the worst is exactly what we seemed to get. We watched in impotent fear as she went in for tests, for open heart surgery as a baby. We watched as she failed to grow, failed to thrive. That’s what they ultimately diagnosed her with..."failure to thrive." They’ve never been able to ascertain what happened or didn’t happen during my sister’s pregnancy and labor that caused that.
It’s odd that I’ve never written about her here, considering that her birth and life are one of the cornerstones of my life. I suppose I’ve been afraid that I didn’t have the words to do her justice--I don't want to minimize what Punkish Middle Sister has suffered, nor do I want to ignore how much joy she's brought us. I wish I had the right words, the perfect words, the ones that will show her to you in all of her beauty and brattiness and joy. But I don’t, but it’s her birthday, and she’s on my mind, so here is my imperfect tribute.
Being forced to watch someone you love suffer, without a voice, without relief, changes you, twists you up. It can make you shut down, cold. Or it can help you open up, throbbing in tune with the pain of a thousand hearts.
For us, it’s done all of that.
Her open heart surgery was a risky, experimental move. She was tube fed and weak. Her heart was too large for her body, working too hard. Bruised. My sister called me at work when the date was decided, sobbing, afraid that this operation would kill Princess Girl. Afraid that NOT operating would do the same. Afraid that she would be unable to care for her two sons--at that time,they were about 5 and 2. I quit my job to help her. It was the best thing I ever did. We were all unsure about whether Princess Girl would survive her operation, and I knew, with that certainty born of extreme emotion, that I wanted to spend time with her while I could…whatever time she had left. I wanted to burrow deeper into the nexus of my sister’s life. I wanted to do what I could.
She survived that operation, and several others. But that mysterious illness has never released her from its grip. She is an infant in an eight year old’s body. She doesn’t speak. Doesn’t walk. Doesn’t seem to really understand. And perhaps she never will.
But I don’t want to concentrate on what she cannot do, because it is what she DOES that amazes us all. She lives, on and on, in defiance of what the doctors predicted for her. She laughs. She seems to know us.
She loves. Puppies and kittens and Boohbah and her parents and especially her older brothers. And I like to think she loves me, and TEG as well.
It’s fitting that she was born on Valentine’s Day—she’s forced us to look at the very nature of love, at how it can simply pour out of you, unbidden, just because someone exists.
I can’t help but lapse into clichés—she is a miracle. Not because she is perfect, or because she has made us so. But because loving her has expanded our family, brought us closer to a peace we never realized we needed. Perhaps it was the peace of faith--there was nothing we could do EXCEPT love her. No heroic accomplishments would impress her. There was no deal, no price we could meet to make her better. We had to accept her as she was.
I won't gloss over it. It's been difficult, frightening, discouraging. It's difficult to keep from mourning for what she could have been, might have been. And yet...we are wholly, humbly blessed to have her in our lives.
Hope you all have a wonderful Valentine’s Day, and that you are surrounded by the mysterious miracle of love.
___________________
P.S. I have been tagged, but I can't seem to think of six weird things about me lately. I suppose I am thoroughly boring. Hopefully I'll come up with something soon. :)
I wish it had been just like that—the beginning of one story and the beginning of a life—being able to watch the baby, who I’ll call Princess Girl, grow and change and unfurl like velvet.
But it wasn’t.
No, my niece was born with several complications. Doctors shook their heads and looked grave, prepared us all for the worst. And for years, the worst is exactly what we seemed to get. We watched in impotent fear as she went in for tests, for open heart surgery as a baby. We watched as she failed to grow, failed to thrive. That’s what they ultimately diagnosed her with..."failure to thrive." They’ve never been able to ascertain what happened or didn’t happen during my sister’s pregnancy and labor that caused that.
It’s odd that I’ve never written about her here, considering that her birth and life are one of the cornerstones of my life. I suppose I’ve been afraid that I didn’t have the words to do her justice--I don't want to minimize what Punkish Middle Sister has suffered, nor do I want to ignore how much joy she's brought us. I wish I had the right words, the perfect words, the ones that will show her to you in all of her beauty and brattiness and joy. But I don’t, but it’s her birthday, and she’s on my mind, so here is my imperfect tribute.
Being forced to watch someone you love suffer, without a voice, without relief, changes you, twists you up. It can make you shut down, cold. Or it can help you open up, throbbing in tune with the pain of a thousand hearts.
For us, it’s done all of that.
Her open heart surgery was a risky, experimental move. She was tube fed and weak. Her heart was too large for her body, working too hard. Bruised. My sister called me at work when the date was decided, sobbing, afraid that this operation would kill Princess Girl. Afraid that NOT operating would do the same. Afraid that she would be unable to care for her two sons--at that time,they were about 5 and 2. I quit my job to help her. It was the best thing I ever did. We were all unsure about whether Princess Girl would survive her operation, and I knew, with that certainty born of extreme emotion, that I wanted to spend time with her while I could…whatever time she had left. I wanted to burrow deeper into the nexus of my sister’s life. I wanted to do what I could.
She survived that operation, and several others. But that mysterious illness has never released her from its grip. She is an infant in an eight year old’s body. She doesn’t speak. Doesn’t walk. Doesn’t seem to really understand. And perhaps she never will.
But I don’t want to concentrate on what she cannot do, because it is what she DOES that amazes us all. She lives, on and on, in defiance of what the doctors predicted for her. She laughs. She seems to know us.
She loves. Puppies and kittens and Boohbah and her parents and especially her older brothers. And I like to think she loves me, and TEG as well.
It’s fitting that she was born on Valentine’s Day—she’s forced us to look at the very nature of love, at how it can simply pour out of you, unbidden, just because someone exists.
I can’t help but lapse into clichés—she is a miracle. Not because she is perfect, or because she has made us so. But because loving her has expanded our family, brought us closer to a peace we never realized we needed. Perhaps it was the peace of faith--there was nothing we could do EXCEPT love her. No heroic accomplishments would impress her. There was no deal, no price we could meet to make her better. We had to accept her as she was.
I won't gloss over it. It's been difficult, frightening, discouraging. It's difficult to keep from mourning for what she could have been, might have been. And yet...we are wholly, humbly blessed to have her in our lives.
Hope you all have a wonderful Valentine’s Day, and that you are surrounded by the mysterious miracle of love.
___________________
P.S. I have been tagged, but I can't seem to think of six weird things about me lately. I suppose I am thoroughly boring. Hopefully I'll come up with something soon. :)
Labels: family tales
posted by Anonymous at 10:42 PM
12 Comments:
That's such a tragic, yet beautiful story. As painful and traumatising as it has obviously been, and still is, it sounds like Princess girl has been a blessing to your whole family. And for me, as a complete outsider, reading your story helps to put things in perspective and appreciate the relative health of the ones I love.
We are a society obssessed with perfection which deprives us of knowing true love. Your post about Princess girl reminds me of that fact. Thanks for sharing.
When you wrote, "It's fitting that she was born on Valentine's Day--she's forced us to look at the very nature of love, at how it can simply pour out of you, unbidden, just because someone exists." I felt my own heart pound. What a beautiful tribute this is...I wish you all well.
Love,
D.
This is a very beautiful love story, M. To be wholly, humbly blessed to have someone in your life...now that is TRUE love.
I'm amazed at your strength!
p.s. I'd love to Join you on the Finding Water group, but I just found out that ALL of our county libraries are closing due to lack of funding. I'm in shock.
what a wonderful tribute!! I'm glad that you have been able to find so much love out of such a complicated and fraught life story. xo
What a beautiful, beautiful post of love. And agree that it is fitting she was born on the day that stands for love, and she had so much to teach about it...The littlest people often teach us the most about love. :)
:)
""It's fitting that she was born on Valentine's Day--she's forced us to look at the very nature of love, at how it can simply pour out of you, unbidden, just because someone exists." How profound. So long I've always felt that I needed to earn love--that if I did something differently or if I took risks or turned away from my family for a while, that they would love me less. It's powerful to know that some types of love are unconditional.
Beautiful post! Sorry that I'm late!
a happy belated birthday to your treasured niece! what a beautiful, heart-tugging story, you've shared. thank you. have you ever read expecting adam, by martha beck. it's a beautifully written book and reminds me a little bit of your story.
"Because her loving has expanded our family"
That you quit your job to help your sisters family.
Because perfect doesn't mean everything if fine and good. But real and deep.
Blessing to you and yours. Thank you for sharing your family with us.
Thank you for sharing this bit of your life and family. It is beautiful, heartbreaking and heart expanding.
You have taught me a bit more about love.
XOXOXO
It IS hard to believe that you haven't written about her here before...since it sounds like her life is such a linchpin experience for all of you. With souls like the Princess Girl's, it always seems as if WE are the ones giving...until it dawns on us that we're really the ones getting. Beautiful tribute to her.
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