A Mother’s Day Reflection on Mother-Daughter Disability

After spoiling my plans and letting my mom, Ellen, in on her surprise Mother’s Day post, I realized I had no idea how to live up to the promise of writing one. How could I find words that explain what it means to have been raised by someone whose being is connected with mine down to the very structure of our bones? But in her typical style, my mother came through with advice as I pondered this, giving me the insight I needed to get my thoughts in order. When she was in college, she told me, if she found herself struggling to begin writing on a tough topic, she would open her essay by addressing that struggle.

It is the concept of struggling that resonated with me in this case. I’m not one to sugarcoat things, and so there is no denying that as a disabled mother-daughter pair, our lives are challenging both individually and together. We are often the literal embodiment of the blind leading the blind, or rather, the mobility impaired leading the mobility impaired. Most of the time, this works out just fine for us, but double the disability leads to everything from a dramatic comedy to a regular old comedy of errors as we help each other.

And so I think back to a comment my mother once heard being made about us when I was a baby – a comment implying that these slightly unconventional lives we lead were not worth living. A woman who was behind my mom while she was holding me at an event said “Look what that woman did to her baby. She must feel so awful.” Though I wasn’t old enough to process this comment, the story sticks with me – not because this horrible woman was right, but because every day, my mother’s life is one that would put this woman in her place a thousand times over.

I know my mom has grappled mightily with guilt because our disability is genetic and she passed it on to me. I know my mom wishes our situations could be different. But to the woman who tried to hurt my mom so many years ago without knowing a thing about her, I want you to know that not a day in my life have I held my disability against my mother. It might not make life easy for either of us, but the fact that we share something as physically and emotionally personal as our disability has made me feel lucky in ways that transcend full explanation. She is my best friend, the kind who understands me when I’m at a loss for words because she, too, has been where I have been. She has been where I have been on levels that cannot even be seen by the unaided human eye, right down to the double helices of our DNA. I wouldn’t trade one bit of our experiences for the bond we have always had between us.

I treasure this bond because it is so deeply real. In fact, it’s occurred to me in recent months that I have moved beyond views of my mom as a hero or a role model, because those are concepts that just don’t cover how I feel. My mom is genuine, and honest, and flawed, and beautiful, and intelligent, and dedicated, and weak, and strong all at once. She is human, and she has shown me every day not how to defy circumstances, but how to make things work with every part of our reality. And to me, there is no better way to be a mother.

So, Happy Mother’s Day, Mom! For every part of who you are, know that I love you more than anybody can.

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Comments

  1. Bawling here. Seriously bawling.

    Emily, what a lovely post and what beautiful words to your mom. I’m certain this post will honor and bless her more than you could possibly know.

    The last paragraph… oh my goodness, pure poetry.

    Thank you for sharing your love and admiration for your dear mom.
    xoxo

  2. This is so beautiful! What a wonderful tribute to your amazing mother and the bond that you share. I don’t know her, but I know she’s a good mom because she raised such a great daughter! I’m sure she’s very proud. Happy Mother’s Day, Emily’s mom! 🙂

  3. Beautiful … just fantastic! I had similar difficulty writing about my mother, too. It’s so hard to define how our moms affect us, because they affect everything. You did a great job, though!

  4. This post is beautiful! I wish I could write this elequently about my mum 🙂

    Your mother sounds like an amazing woman & I really hope that the lady who made the crass comment so long ago knows that what she said was ignorant & regrets it. Honestly I hope she, & anyone else who thought similar, sees this post or something similar & it makes them think.

    Sally x

  5. Your mother may have wished, for your sake, that you didn’t have a disability, BUT she must have known that she enjoyed her life, and that her life was worth living, and that your life was worth living too. She probably knew that your life wouldn’t be typical but that you’d be loved greatly. And that stupid other lady should have kept her mouth shut. Before making comments like that, people should think to themselves, “Is this comment definitely true? Will it help the other person in some way? Is it kind?” If not all three of these things, the comment should be kept to oneself!!!

  6. Sometimes what others perceive as our weakness is in fact are greatest strength! Emily, you did a beautiful job of paying tribute to your mom and I am certain she is beaming with pride all the time because you are in her life!

  7. Hi Emily,

    What a lovely mother’s day gift for your mom. You are an amazing young lady.
    Enjoy your bond with your mom.

    Your mother sounds amazing and she is a tribute to all women who take on the wonderful job of motherhood. I can’t wait to meet her one day.

    Great post!

    Dara

  8. Great Post Emily! But I’ve got to ask what did your Mom do to you to inspire that comment? Did she dress you in plaid? That was horrible thing my mom did. Hope all is well with life and work,
    -Gregg

  9. Oh, how I pray my son feels as you do when he’s older, that he’ll be able to say “I want you to know that not a day in my life have I held my disability against my mother. It might not make life easy for either of us, but the fact that we share something as physically and emotionally personal as our disability has made me feel lucky in ways that transcend full explanation.” What a beautifully written post, Emily!

    Also, I loved your NYT post!

  10. There is just no explanation for the absolute ignorance of some people! You and your mom are strong and awesome women, proven many times over. My hat is off to you both for your willingness to educate and advocate!!

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