My Daughter Is Twelve and Four

swallow-my-sunshine-yellow-bowl

Earlier this month, my twelve year old daughter Sammi mused to me, as she rummaged through the refrigerator for a snack, that she was hungry all the time these days.

“I feel like I just always want something to eat!” she told me as she scooped refried beans into a bowl at the counter.

“That’s pretty normal for a kid your age,” I reminded her. “You’re doing your last big growth spurt right now.”

“Yeah,” she answered, sprinkling shredded cheese on her bowl of beans and sliding it into the microwave, “but this is crazy. By seventh period every day, I’m already trying to think about what’s left in my lunchbox to eat on the walk home! I just chew gum and try to make it for three more classes.”

I made some suggestions about keeping a small snack in her bag to nibble between classes, and she brought her bowl of beans and cheese to the counter to eat as she got started on homework.

Four years ago, I would not have recognized one thing from this scene: not her independence, not her strong shoulders or her thick hair, not my casual tone, and, most of all, not the fact that my daughter was making the equivalent of a full meal as an after-school snack.

Four years ago, a bowl of refried beans and cheese would have come home from school with her in a thermos, missing a few spoonfuls, and be dumped in the trash by dinner time when she still hadn’t finished it.

Four years ago, my relationship with Sammi was almost entirely composed of my trying gently to encourage her to eat, my trying not-so-gently to encourage her to eat, and my internal monologue that blamed everything that went wrong with her temperament to my failure to find exactly the right things for her to eat.

Four years ago, I didn’t really know my daughter at all.

I’ve come to understand a lot of things about what years of esophageal compression, restrictive diets, and repeated surgeries must have done to blunt Sammi’s real personality and my ability to really connect with her. Most of those things are related to my stubborn, self-centered belief that — if I just cooked hard enough — I could solve her health problems. The truth, something any regular readers of this blog know, is that what would have solved her health problems were doctors who spoke to each other, consulted with each other, asked each other simple questions about the patients they had in common. What I believe would have solved her health problems was if, just once, the gastroenterologist had called the cardiothoracic surgeon and asked, in whatever way doctors talk with each other, whether there was a chance that Sammi’s esophagus issues had anything to do with the surgery she’d had on her aortic arch as a baby.

Instead, we stumbled  through several years where the only version of my daughter I knew was the one whose food got stuck in her esophagus at every meal, but who’d never known any other sensation and didn’t know that her experience was strange. The only version of my daughter I knew was the one who never quite got enough calories, the one whose temper was short but who had intuited that the correct response to discomfort was to power through it and play harder. The only version of my daughter I knew was the one whose sun shone, somehow, through the pain and the hunger and the exhaustion. I knew my daughter as glimmers of sunshine.

I spent the early months of gorgeous re-connection with Sammi feeling a lot of anger. I hated the way the doctors ignored my initial questions about the possibility that her diagnosis was wrong. I hated the long scar down her back, which had started to fade into nothing when the doctors opened her up again. I hated the feeding therapy she needed that I couldn’t do myself. I hated all the fat-free food she had to eat as she recovered. I hated how I felt when she had a day or two of not feeling hungry, when I worried we would end up back where we started. I hated the button-down shirts she wore to avoid lifting her arms and ripping her scar open, not because they weren’t cute but because she hated them. I hated the way her health had forced her older sister into the wings. I hated the bills and piles of prescription receipts I had to sort. I hated the “mom of a sick kid” identity which felt like all I was. Most of all, I hated the years we lost, the years she lost the chance to be herself.

swallow-my-sunshine-twelve-and-fourI have a different daughter now, shaped by the years she struggled but trusting now, fully, in the miracle of her own body. She is still working through the experiences she had. Maybe she always will be. Most importantly, though, I know that my relationship with her is now face to face, heart to heart, and through no fog of discomfort and ego. We are loving each other, unfiltered. She is far more like me than I ever knew: easily hurt, quick to take on emotional responsibility for others, strong willed and stubborn. Also like me, she is generous, empathetic, creative and beautifully affectionate.

I didn’t know her this way until four years ago, when she took her first bite of food the evening after her surgery and said, “It goes down so fast!” Slowly, like a mother and her newborn, we began to get to know each other. As the hate fates into something like compassion, love fills in the cracks.

 


This has been a Finish the Sentence Friday post. This week, we’re completing the sentence “Ten Things I Hate More Than Anything.” FTSF is hosted by Kristi Campbell of Finding Ninee and Kenya G. Johnson of Sporadically Yours.

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10 thoughts on “My Daughter Is Twelve and Four

  1. I can’t say enough how happy I am for you both that you were able to figure this out. And sounds like you are both now in a much better place for it. So, for that alone truly suppose a blessing after all.

  2. Ugh there are so many times (days/weeks/months/years) I could have easily listed 10 thinks I hate about this life with a rare child. But you nailed it in the end, I am so grateful for my child and the connections we share.

  3. I love the ending and the photo. You both look so happy in it and why wouldn’t you? She can eat! She’s hungry! She’s strong. I hate that the doctors didn’t listen to you back then too. Truly. But I’m so glad that finally, the right diagnosis made it so that food can be swallowed “so fast.”

  4. I love your last sentence! That is beautiful and it is true!

    I wonder if doctors are learning to communicate more with each other regarding the patients they have in common. That would be so helpful in coming up with the right diagnosis.

  5. So happy it’s all turned around for your both. Loved the last line as well. <3

  6. I love this – it’s written beautifully but what I mean is that I love the opportunity that you have – both of you have – in learning and growing now that Sammi’s entire experience is not defined by a body part. And I love you for recognizing it.

  7. Sometimes I read your stuff and I have nothing to add. (Oftentimes) But I so love the words, the intent, and the lessons. So I think you should know I was here. That’s all.

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