Proud of You

16 Nov

I had the privilege of presenting a second piece on KQED Radio’s Perspectives. The piece, Proud of You, aired earlier this week. The audio is on KQED’s site.

When we were expecting our son a doctor told us he would be very disabled. I had feared hearing that and yet I had never prepared myself. I didn’t even know what questions to ask. After many sleepless nights the question came to me. I called a friend of mine whose daughter is disabled and asked simply, “Is she happy?” Yes, he told me, she is generally happy.

I didn’t know whether my son would be able to be happy. In our society we often equate disability with unhappiness.

A few days later we learned this was a misdiagnosis.

When my son was two we realized he was disabled, for different reasons. There were suddenly far too many things to do than we could manage. But I never thought, “My son and I should set an example.”

I did want to make sure my son got out into the world. For him. I knew it would be very easy to retreat to our home. So we go into the community as often as we can.

People notice us. Once, a man approached us. He was very upset as he was trying to come to terms with his mother’s dementia. He saw a parallel between his mother and my son. And he noticed that my son and I very much enjoy our time together, even though we are very different.

My mother had recently passed away after years of dementia. I told my neighbor what I had learned from my son. This person in front of you is still a valid person. My son is very different from other children. My mother was different than she was when we were younger. But I learned to enjoy the time I have with the people in front of me rather than comparing them to some “normal” person.

I told my son, “I’m talking about you because I’m proud of you.”

People notice my son and me. Sometimes they see us struggle. Struggle hard. Often they see us enjoy our time together.

I don’t mind that people notice us. When they do, I remember when my friend helped me, when my son taught me to accept my mother. And I hope that our struggles and our joys set an example for others.

With a Perspective, this is Matt Carey.

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4 Responses to “Proud of You”

  1. Andrew November 17, 2018 at 01:37 #

    Thank you for this, Matt

  2. wzrd1 November 17, 2018 at 06:22 #

    I really didn’t realize that there’s still a scab to rip off from my father’s gradual demise. Thanks for letting me know that, so that I can properly heal.

    There is a difference, a child will eventually grow, unexpectedly in some areas, the dementia patient recedes, incrementally, stair step or gradually, depending upon the disease that caused the dementia.
    And with dementia is the very real fear that, in those very footsteps, I shall pass.
    Fortunately, I watch my health and thus far, I’m the eldest in the male line of both families to not be diabetic. All keyed around keeping a genetic tendency to acquire excessive body fat.

    One scar, becoming the parental figure to my own parent. Just when I wanted to exchange how things were as a senior NCO in the military, which I had retired from, he rapidly faded.
    But, I also learned that what worked for our kids, kids I babysat for free when abroad and my own grandchildren, when I babysat them early on in dad’s decline was, deflection and redirection are critically important.

    While I dearly miss my sorely missed advisors, mom and dad, I realize that they prepared me early on to think for myself, never quite and figure your way out of various problems.
    But, I sorely miss them being available when I run out of altitude, speed and ideas.
    And that, an Air Force expression from fighter pilots and I was an Army poop stomper, up to my knees on a good day.

  3. doritmi November 17, 2018 at 20:28 #

    You played this for your kid, right? Must mean a lot.

  4. Chris November 18, 2018 at 03:25 #

    “But I learned to enjoy the time I have with the people in front of me rather than comparing them to some “normal” person.”

    That is the lesson I also learned. Sometimes it has been very hard, but it has helped by getting help by lots of wonderful people like medical professionals, special ed. teachers, several wonderful state employees in human services departments and our local disability advocacy/rights organization.

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