Do you ever wish your child was “normal”?

Do you ever wish your child was "normal"?  by Donna Kirk

I have often heard the question, “Do you wish your child was normal?” being asked of parents whose children have varying degrees of disability. For years, I would never have dreamt of saying “yes”.

When someone first asked, I was offended, tempted to respond that “normal” meant a setting on my hair dryer and should never be applied to people. But biting back never leads to good stewardship. I replied that I loved my son Matthew for who he is and wouldn’t change a thing.  Seething inside, I suspected the askers pitied me and him more than ever.

But the answer I gave always bothered me. I couldn’t figure out how to put my true feelings into words. It took years before I decided I could be more honest, express my love for Matthew and still be a good advocate for him.

As he grew, Matthew’s struggles were in such contrast to the life experiences of his sister Kelley and brother, Joseph. I wished every day that Matt could have an easier life and for better physical and mental health. I wished he could communicate with words to express his feelings, needs and wants. And, if that’s what “normal” meant, I wished for it with all my heart. To go on saying I wouldn’t change a thing was totally irrational.

But I know why I hid my honesty for so long. I didn’t want people to think I didn’t love Matthew and would trade him in an instant for a more socially acceptable version. I decided to stop worrying about other people’s perceptions of kids like Matt and what they thought of me as a mother. My job was to make the best life possible for him and for others who had the same challenges.

When I learned to express my feelings honestly, I became a happier, more confident person. Matthew was calmer too. And, I was able to appreciate him more for the person he was.

After Matthew died in 2010, at age forty, I decided to publish the book I’d been writing about his remarkable life. I worked hard to make it a comprehensive and engaging account of his charm and accomplishments and of his value to our family and his community.

I wanted people to read about Matthew, appreciate him and wish they’d met him.

About the Author:  

Donna Kirk is the author of Finding Matthew, A Child with Brain Damage, A Young Man with Mental Illness, A Son and Brother with Extraordinary Spirit.

Donna shares,  “When I grew up in the 1950’s and 60’s, three professions were available to women. But I didn’t want to be a teacher, nurse or secretary. I wanted to be a mom. My son Matthew was born in 1970 in Oakville Ontario. He suffered oxygen loss during his birth which resulted in severe brain damage. He was transferred to Sick Kids Hospital the next day where a doctor declared him to be a vegetable with a heartbeat. This doctor advised my husband, Ed and me to institutionalize Matthew, forget about him and have another baby as soon as possible. We ignored this offensive pronouncement and brought our son home, determined to empower him to achieve whatever he could.  Two years later, in 1972, Matthew swam on national television. He had learned to swim underwater to the edge of the pool, and unassisted, pull himself out and sit on the deck.

Matt died in 2010 of pneumonia. His life was a series struggles and successes; that’s what life is all about. I’m so blessed and grateful for the opportunity of being his mom.”

Donna Kirk

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