As the mother of a child with severe disabilities, I’ve watched my heart step into places I wouldn’t wish upon anyone. I’ve handed my heart over to a team of surgeons when she – my daughter, Sarah, that is – was no more than six weeks old. I’ve seen my heart broken by the rejection of other children and other adults. I’ve cried while my tender heart lashed out in anger as a result of being misunderstood, but I’ve also laughed wholeheartedly at the joy my little girl has brought into my life.
So it is for those of us privileged to call ourselves “Mother.” The love of a mother can be fierce. All the more when her child lives with the daily challenges surrounding disability. The constant suffering through chronic pain; the ever-present fears hovering over relentless medical conditions; the harsh reality of being the primary caregiver for someone with significant cognitive limitations.
Children with disabilities are perhaps the most vulnerable amongst us, and we – their mothers – are called to the role of Defenders. For those of us who have children who cannot speak for themselves, we become their Voice.
I have served as my daughter’s voice in hospital rooms and in school rooms. On the playground, in the grocery store, in our neighborhood. After twelve years of loving a child who is for all practical purposes non-verbal, I have become skilled at being her Advocate, her Spokesperson, and Interpreter. It’s what we mothers do.
Last night I sat on Sarah’s bed as she slept soundly, her body in a beautiful rhythm of deep and weighty breaths. I laid my hand on her heart and allowed myself to get swept away by its beating. And within that melody, I heard my daughter’s voice as she spoke from the depth of her heart to mine. It was the message my weary heart longed to hear…
Thank you, Mommy, for the long days and even longer nights you spend caring for me, fighting for me, providing for me, loving me. I’ve seen every tear you’ve cried and every wrinkle that’s come, and I am grateful. I’m grateful for the strong love you have for me, for the ways you choose to protect me, for every prayer you’ve prayed for me, and for all the times you have spoken up for me. Thank you for taking the hits of all those unwelcomed, disapproving looks from strangers upon yourself so that I wouldn’t be hurt by them. Thank you for trading in all the dreams you once had for a new and better dream that we can live out together. Many women do noble things, but you surpass them all. And so in my spirit, I arise and call you blessed, Mommy. Charm is deceptive, and beauty is fleeting, but a woman who fears the Lord is to be praised. You show me Jesus, Mommy, and so I give you the reward you have earned… I give you my heart, and I give you my words. I love you, Mommy. Happy Mother’s Day.**
*Adapted from Elizabeth Stone quote
**see Proverbs 31:28-31
Shauna Amick, M.Ed., serves as the Vice President of Development for Joni and Friends. Her daughter Sarah, who has Down syndrome, is an integral member of her class at school and her Sunday school class at church.