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I’m the mother I am thanks to my daughter’s disability

On the first Mother’s Day that my daughter, Sesha, no longer lived at home with us, I received a lovely basket with various hand-crafted gifts from her. With help from her aide, she handed it over to me, and as I gushed she looked so very pleased.

Mother’s Day is a time for children to reflect on what their mothers have done for them and to express gratitude in the form or flowers, meals in restaurants, or a sweetly written card or letter. I am fortunate enough to have two wonderful children who are now adults. Every Mother’s Day I get a beautifully written note from my son Leo—I cherish each word—and often a gift or visit expressing his gratitude.

And while I may get a hand-made card and a hand-crafted gift from my daughter, the words on her card do not come from her, and the hand-crafted items are not from her hands. Although she is 49 years old, even releasing the gift so that she could hand it over to me was an achievement. Sesha has very significant developmental, intellectual and physical disabilities. Yet I look forward to the gratitude I will feel in response to my son’s thoughtful, eloquent words, and to the smile, hug, and efforts from my daughter.

You see, Sesha is not a tragedy and she, no less than my son, makes me want to express my gratitude to her for the rich experience of being a mother. Many may wonder at this, and so on this Mother’s Day I want to turn the tables on the standard narrative—a grateful child thanking and extolling the mother. It seems the right moment to explain how something so many fear has given me something to cherish. For she has elevated my understanding of a mother’s love.

I don’t think I am at all exceptional in not only accepting my disabled child, but feeling deeply grateful for her. Nor is my feeling surprising for most whose lives are inflected by disability. Let me tell you about a mother I know. She had one daughter as significantly disabled as my own, who very sadly passed away shortly after her thirtieth birthday. Her only other child, an adult daughter with Down Syndrome, now lives in a group home. While others may focus on the unimaginable pain of losing a child, she deflected that thought. Instead, she told me, with a joyous smile on her face, “I thank God every day for giving me these two daughters. They made me a much better person, and they added immeasurable richness to my life.”

I too have become the person I am—in good measure—because of my daughter.  I credit advocates in the disability movement with helping me understand disability very differently than I had in the past. Like this mother, I too am deeply grateful for this child, for who she is—and her disability is part of who she is.

I am, first of all, simply grateful for her as a wonderful human being capable of more love and joy more than most. I have no idea of whether these gifts are in any way a consequence of her disability but being in her presence adds value and meaning to my life. In this, my gratitude is not at all dissimilar to my gratitude in being the mother of a son—a wonderful and accomplished man any mother would be proud of.

I am not grateful, just to be clear, for the nights I have had to spend with her in hospital emergency rooms, or for her medical fragility or the added precariousness that disability can bring. She has seizures that distress her and threaten her life and well-being. Because she cannot speak, she cannot indicate when something hurts or that she is ill. I fear that she will injure herself because she lacks judgement about dangerous situations. Just like all parents of developmentally disabled children, we have struggled with the financial costs and the bureaucracies and insurance hurdles involved in getting her the care she needs. These are true difficulties: emotionally, physically, materially, and just about every other way you can think of.

And yet that very fragility, that precariousness draws me and her dad so near to her and evokes profound emotions that one rarely taps into otherwise.   Furthermore, watching and learning the very particular way she negotiates her world and derives from it pleasures we think are reserved only from the most refined of us, reveals the world anew. The quality of her joy, for example the intensity with which she listens to a symphony, opens up to all who are with her another glorious way of being. And the pride she demonstrates in mastering a task most think nothing of reminds me that success lies not in some final product (inevitably imperfect) but in our efforts and our striving.

I know no one else like her. When British playwright and director Stephen Unwin’s daughter is asked to describe her very significantly disabled brother Joey, the 10-year-old pauses and then simply says he’s “Joey-ish.” And yes, my daughter Sesha too can best be described as Sesha-ish. These children, although they are diagnosed and labeled to death, fall into few of our usual categories. They teach their parents to recognize each individual human as distinctive, unique, and utterly irreplaceable. In this recognition lies the secret of a mother’s love.

So, next time you ask a mother about her children and she replies that one of her children has a significant developmental disability, do not lower your voice and say, “Oh, I’m so sorry.” Do not assume sorrow, not on Mother’s Day or any other day. Whatever she may have experienced, chances are good that she has accepted the child she has and feels grateful and proud to have become the sort of mother and person she has become thanks to this child.

Featured Image Credit: Photo by Elio Santos on Unsplash

Recent Comments

  1. Eddie Lalor

    Such an enlightening and uplifting statement. It lifts my heart and opens my eyes. You are a wonderful lady and your daughter is wonderful.

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