Tuesday, May 13, 2014

IN HONOR OF MOTHER'S DAY (A BIT LATE)--A MEMO TO IMPERFECT MOMS

I know there are those of you out there with Moebius Syndrome who already are moms.  And I know there are others of you with Moebius who want some day to be moms.  Guess what--you can be!  And you can be a great mom--no matter what physical challenges you face.  The below is from a mom who does not have Moebius,. but she has other physical differences.  And she is a great mom.  Read on:

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It was one of those days when I would have given anything to be someone else.
We were at the park and I watched my 3-year-old son climb the slide's ladder. He crossed the balance beam and conquered the climbing wall, and I just stood there, trying to tell my fears to shut up.
I knew that, if he were to fall, these arms could not catch him. I could only kiss away the tears I failed to save him from. I am a mother with upper limb differences, and this swallowing of fear is a daily effort on my part, since I've always felt a little less capable as a human being, and especially now as a mother.
I was born with a disability called arthrogryposis multiplex congenita (AMC), and it left my arms weak, shorter than average and stiff. This makes the most mundane tasks quite difficult sometimes, but I'm so grateful that AMC also left my hands hooked under -- it's with these "hooks" I am able to carry my children, at least for a few seconds here and there.


As I watch my little boy flit from one obstacle to another, I remember the summer before I started kindergarten. I was playing at the park while my own mother watched from the shade.
I didn't dare tackle the very tall slide, as ladders always scared me. I couldn't properly grip the rungs, and even at that young age, I understood that I had limits.
Instead, I climbed the wide steps of the elephant-shaped slide, which was probably intended for children much younger than me. I reached the top and shoved off. From the first moment of my descent, I began to lose control. My body had turned sideways by the time I reached the bottom, and I fell onto the concrete landing, left arm first.
The thing about arms affected by AMC is that they don't bend. They just break. My mom rushed me to the hospital for this, the first of the seven arm breaks of my childhood.
Naturally, even now as an adult, I find it difficult to watch my son take physical risks without feeling a surge of panic. Without remembering the crunch of snapping bone.
He, however, seems to live for anything that would terrify me. Often I force myself to turn away so he can earn his boyhood scrapes without this nervous mom swooping in.
For many things, I have to use my feet. I have to admit that toes are poor substitutes for fingers, and for every obstacle I've overcome, there are 10 that I haven't. Despite that, I drive a car. I change diapers. I've published a book and am a freelance journalist -- every word typed by toe. I travel all over the country to speak to schools, women's groups, churches.
But the truth is, as my son laid on my chest moments after birth, I didn't know how I would manage to hold him. I didn't know how I'd work a car seat. I'd changed exactly one diaper, years before, and I'd never held an infant. I was in over my head.
But my son and I adapted to each other quickly, so that within two weeks my husband went back to work and I was able to care for my new baby -- not without difficulty, but without help. Luckily, newborns are extremely patient (read: they can't move), so I was able to work on those things that were difficult, and take my time until it became a little more natural for me.
But really, most of what I do throughout the day is struggle. I am in such awe as I watch how easily other moms pick up their toddlers. How easily someone turns the page of a book. How quickly other writers can type. Wow. What would that be like?
Struggle has been the great theme of my 30 years. And for most of those years, I hated it. I would have given anything to be normal -- to be anyone other than me. I wanted to blend in. Who doesn't?
I can't tell you the number of times I thought, whispered, growled under my breath, "WHY does everything have to be so freaking difficult for me?" After attempting to open a window. To button my pants. To strain pasta.
But as I've become an adult, as I worked through so much pain in writing my memoir, I began to see that Struggle is not my enemy. In fact, I can thank Struggle for developing in me many of the traits I like most about myself. And Struggle in my life gives me the ability to teach my kids resilience. Empathy. Determination. Hope. So many intangibles that a perfect mom would not be able to model for her children.
Because I'm flawed, I can perfectly prepare my kids to deal with the imperfect boss, the imperfect spouse, the imperfect child. Because I am weak, my children can see how little weakness can do to hold us back from living a life filled with purpose.
Because I struggle in front of them daily, my children will inherently know not to run from the difficult things in life, because they see Struggle create in me such gratitude and joy over even the smallest blessings. My children have been dealt an awesome hand.
It's Mother's Day, and you might be an imperfect mom. Don't be afraid! Don't wish you were someone else. You're the mom your kids need most. You're the ideal person to prepare your children to thrive in this often less-than-ideal world.
I've heard it said that your greatest strength is also your greatest weakness. But it could be that your greatest weakness is your greatest strength -- as a parent, as a person. Love an imperfect mom today, especially if that mom is you.

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