17 hours ago
Thursday, May 14, 2015
My child with special needs loves me, no matter what people think
This post is by Hillary Savoie, PhD, mom to Esmé, age 4. Esmé has PCDH19 Epilepsy and SCN8A Epilepsy, rare disorders caused by genetic mutations. She has severe developmental delays, failure to thrive and a movement disorder; she is tube-fed, nonverbal and non-ambulatory. She is also, as her mom says, adorable, super-goofy and very clever. Hillary blogs regularly at The Cute Syndrome. She is the founder of The Cute Syndrome Foundation, dedicated to raising research funds and awareness.
I know, beyond a shadow of a doubt, that Esmé loves me deeply. I know it with the same certainty that I know my love for her. I know Esmé loves me by the thrilled sounds she makes to me. By the way she sinks her head into the softness of my side. By the way she looks meaningfully into my eyes as if she is trying to transmit an important message to me. I know by the way her emotions jump across the space between us.
I am still so close to my daughter that I believe we often mistake each other’s body for our own. Her hands explore my mouth and hers, my fingers tickle her sides and I laugh with delight as the tips of my fingers tickle me back, I need to remind myself to breathe when she cannot. More than four years of supporting her body, reading her motions, compensating for her weaknesses has made her an extension of my body. As her need has made me an extension of hers.
In many ways, we love each other as we love ourselves—in that honest, quiet, accepting way.
But I also know how this must look from the outside. Esmé doesn't run to me and leap into my arms. She doesn't speak the words "Maman I love you!" She doesn't cling to my leg. Loving a mother in these ways requires understanding that we are, in fact, two separate people...and as a result it is the kind of love that grows in time. It is the kind of love that develops slowly as children and parents move from the immediacy of newborn love to the acknowledgement of a child's individuality all the way through to the respectful love that exists between adult children and their parents.
It is a love that is impossible without distance.
And I would be lying if I said I didn't crave this other love from her. But I'm not certain I realized how much I craved it until last night.
In December, Esmé kissed me for the first time. It was a tremendous experience. I knew that she was trying hard to show me that she missed me, more likely than not trying to do something that she thought would please me. It was very loving, but quite fleeting. In the manner of much of Esmé's affection it is a here one moment, gone the next kind of an experience. There is no negotiation, her love is ethereal. If you look at it directly it might disappear.
I accept this.
I pride myself on loving Esmé the way you can appreciate an exquisite flower—carrying the image with me, without needing to pluck it, without needing to claim it.
But, at the same time, it is undeniably isolating.
I grew up in a family filled with a lot of love. We are an effusive bunch. There are hugs, squeezes, back rubs, kisses, loving words--more than enough to go around. Most of my life I have savored that love. But I have learned to live with less of it in the last few years...part of me stiffening against it, afraid that the kindness might unravel me.
Another part of me is determined to explore how love can exist in the less obvious spaces--how you can nurture the subtle love that grows in between words, in the clinical actions that fill much of my time with Esmé, in the stillness of her body for the pause between an uncontrolled hand smacking my chest and a loss-of-tone head butt against my lip and nose. And, I suppose, another part of me has felt that I've not yet earned it...that maybe, one day, I will have climbed high and hard enough in the name of my daughter that I might yet deserve it.
Recently Esmé has started to hug me. At first I mistook it for a flinch—an indication that she did not want to be set down—or a little snuggling in to get comfortable on my shoulder. But, much in the manner of her kisses, she has kept repeating the action, to be certain I understand her intention. The first time it happened clearly was after I lifted her from someone else's arms—she'd wanted me in a way that I'd seen other children want their mommies...but never experienced...and she had indicated her pleasure at our renewed closeness by squeezing me, letting go, sitting up, and then returning with a squeeze.
I so appreciated it, but didn't want to look at it directly for fear of this love slipping between my fingers. "Oh Ezzy, Maman really loves your hugs, thank you!" I'd said. And we moved on.
She'd repeated the hugs a few times again over the last few weeks, but not with great intensity until last night. She was struggling--having been awake since 1 am with only a brief nap. I brought her into her room to change into her pajamas. I sat on the floor in front of her dresser and stood Ez up next to me, my left leg and arm supporting her. I asked, "Ezzy, what color pajamas do you want tonight?" She became giddy at the prospect of her pajamas, smiling and clinking her little fingers against her teeth. I held up a set, "Green?" She turned toward me and smiled bigger. "Ok, green it is, my love."
She suddenly lunged toward me, I braced myself anticipating an unintentional smack. But, instead, she wrapped her slender unruly arms around my neck, settling her mouth next to my ear as if she was going to whisper me a secret. And she squeezed, hard. The left arm working harder than the right, as usual.
In that moment I realized with such clarity how difficult it must be for her to do this...the coordination alone is a feat, let alone the strength to wrap me up into her grasp. In that moment I understood in my heart that she's not been avoiding hugging me for lack of desire, but that she'd been unable figure out how to do so.
When she released me and leaned back to look at me, a look of pride on her perfect little face and a clump of my hair caught in the stiffened fingers of her right hand, I crumbled, crying, quietly hugging her again. She squeezed me back again, sensing my need. We held each other for a moment, and then let go.
Hillary is the author of Around And Into The Unknown, a memoir about her family's journey seeking a diagnosis. Her second book, Whoosh, will be out late this summer (from Ponies + Horses Books). She is the Chief Communications Maman at the Feeding Tube Awareness Foundation. This post originally appeared on The Cute Syndrome.
Posted by Ellen Seidman at 6:38 AM