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My Daughter: Beautiful, Complicated, and Imperfectly Perfect


JJ from behind in her gait trainer

Though she is present in every essay I write, I have yet to describe my youngest daughter in all of her beautiful, complicated glory. My six-year-old has already changed over time and will continue to do so, but today I want to capture her for my readers in the here and now. This is why I’m devoting the entirety of one of my posts to a description of JJ.

 

JJ lives with Rett Syndrome, a rare and progressive genetic disorder. She is nonverbal, can only walk with assistance, has lost purposeful hand use, and gets her nutrition through a feeding tube. But she is much more than this laundry list of symptoms. She is a vibrant, headstrong little girl who loves to talk using her eye-gaze device, travel the neighborhood in her motorized car, and bounce along to pop music in her adaptive harness. Often, people notice her wheelchair and garbled verbalizations and don’t realize just how mobile, active, and talkative she can be. But that’s JJ in a nutshell. In many ways, she is the embodiment of the unexpected.

 

For a start, the care and compassion my daughter exhibits never cease to surprise me. When her beloved in-home helpers are sick, she insists I message them to tell them they are missed and that she is thinking about them. I have also sent candygrams to school friends, purchased gifts, and created get well cards on her behalf. Though my child has experienced things many adults can hardly bear to imagine—daily pain, extreme anxiety, brain surgery, insertion of a feeding tube, the loss of her hands and words and independent steps—she still has boundless space left in her heart for others. If she loves you, you will know it and she will show it. It’s as simple as that.

 

None of this is to say that JJ is meek and retiring. Instead, she has a spicy streak a mile long. I always have to warn new helpers, therapists, and teachers about her arsenal of tricks and the hazing she is likely to inflict upon them. It is not unusual for JJ to demand food only to laugh and then refuse to eat it, pretend to sleep during a therapy session only to pop up with a smile once it has ended, or to navigate to the YouTube app on her speech device when I am trying to talk to her about something important. There is a reason her favorite button is the one that says I just played a trick on you.

 

My youngest daughter is bright, intelligent, and endlessly curious about the world. She loves to watch travel shows, with her tastes running to the luxurious and tropical. One of my favorite moments happened while we were enjoying an episode about a Hawaiian luxury resort. JJ gave me an extra cheeky grin before spelling out quality. She also can’t get enough of the Magic Tree House books. They are how she learns about places around the world and different times in history. I have lost count of the hours she has spent lying in her bed, a smile on her face, as she traveled around the globe having adventure after adventure in her mind. For the past year, JJ has begged me to teach her to read and write—a long and complicated endeavor, thanks to her eye-gaze device. But I am doing my best. Though it sometimes feels like a Herculean task, I want my daughter to access the future career she has chosen. Because what my daughter always says she wants to be when she grows up? A storyteller.

 

One of JJ’s most admirable character traits is her ability to stand up for herself. When our family had a party and passed out drinks, she insisted she be given one too. In her classroom when the other children colored pictures, she demanded her teacher adapt the activity for her. When we moved her bedroom downstairs to avoid the difficult daily trek up and down the stairs, she told us privacy bedroom until we put curtains up around her new space. JJ and I don’t always have the smoothest relationship, but she knows she can always count on me to act as her advocate by proxy. Once, when I came to her school to demonstrate to her teachers how she uses her device, she looked at me and pushed my very favorite button. I love you.

 

I could go on and on, listing the things I love about JJ in return. She is brave and persistent. Deeply loving and physically affectionate. A fashion icon. A loyal friend. A comedian with impeccable timing. The more JJ masters her eye-gaze device, the more we learn about the hidden depths lurking in her uncooperative body.

 

However, what makes JJ most precious to me are not the beautiful sides to her personality, but rather the messy, complicated ones. Her flaws and imperfections are what make her a complete, multi-dimensional human being—even if I find it hard to appreciate them in the moment. As I dress her in the morning, I curse her wriggling little body and sly smile. My heart sinks when she hits the laughter icon on her device and rubs in her older sister’s mistakes. I cringe when she screams and tells me jealous as other children use their hands to play games or when she describes what they are doing as dumb. Stop talking. It is time for you to go. That is bad. I hate that. Get off your phone. These phrases can pour out of JJ, along with malicious laughter, kicks, and screams. But I don’t blame her. When she expresses impatience, frustration, and anger at the overwhelming unfairness of the world, it often feels like she is reflecting my own feelings back at me.

 

Being JJ’s mother is the most painful thing I have ever endured. I go through life holding the fragility of human existence in the palm of my hand, praying every day it doesn’t slip out of my grasp. Caring for JJ means loving someone so deeply I feel like I will not survive if she is taken from me, even though I know she probably will be. It is understanding that though I will likely attend her funeral, I will never dance at her wedding or hold her child in my arms. Sometimes when I see typical children her age, I am struck by a wave of grief so strong I find it difficult to catch my breath. But though I have wished a thousand times that my daughter’s body could do the things that theirs can, there is one thing I have never wished for—a different child.

 

Because I already have just the one I want.

 

 

If you have a child or children, what are they like? What do you love about them? Do they have any flaws or imperfections that make you love them more? Let me know in the comments below.

6件のコメント


ゲスト
7月08日

And thanks to you for reading. I sometimes say similar things to JJ. I think they find it comforting when we admit to them that we're not perfect either and that people can still love one another through their imperfections. - Claire

いいね!

Vickie Rubin
Vickie Rubin
7月08日

This was absolutely beautiful! Thank your sharing your honest story - I also have an imperfectly perfect daughter and your line "there is one thing I have never wished for—a different child. Because I already have just the one I want." says it all! Thank you from a fellow-mom- V

いいね!
ゲスト
7月08日
返信先

Thank you for reading! I'm glad that the idea fits for your daughter as well. I love hearing from parents who find things that resonate with them. I think all of us pretty much have imperfectly perfect kids (at least in our eyes)! - Claire

いいね!

Ashley Gearhardt
Ashley Gearhardt
7月08日

Wow. This was just beautiful, incredible, complex and honest. It brought tears to my eyes. Thank you so much for having the bravery to share this with us all.

いいね!
ゲスト
7月08日
返信先

Thanks for being such a loyal reader, Ash, and for always finding something kind to say about my posts :) - Claire

いいね!

ゲスト
7月08日

Thank you for being so candid. I appreciate the distinction between wishing things were different for your child, but not wanting a different child. When I see flaws in my child that remind me of my own, I want to hug him and tell him that all will be OK. That I believe and understand that it's difficult and/or upsetting. And that time and perspective may not fix things, but acceptance helps.

いいね!
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