Parents and Disabled Children: I'm 40 and I Want My Mommy

Parents and Disabled Children: I'm 40 and I Want My Mommy
We loved each other but always thought we’d be living separate lives.
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It’s 2:00 A.M. and my mom has responded to my cries into the night.  She works hard to get my feet lifted up, fetch the medication and do the best to tell bad jokes to crack my focus on the pain.  Is it the memory of a ten year old child with a broken ankle?  No, it’s the story of a 40 year old living with the chronic pain of Cryptogenic Sensory Polyneuropathy and my mom, 63 years young, and we are doing the middle of the night routine that has come most nights in the past year.  She coos and cajoles as if I were a child, and, for the moment, I feel exactly like a child again.


It wasn’t always such a great relationship.  While I was growing up, mom was struggling with health issues which went undiagnosed for years.  She kept up with my brother and I but the day to day raising of us was done by my Grannie V.  And, then, our relationship was unbalanced on my side when I went through recovery for abuse and addiction issues.  We loved each other but always thought we’d be living separate lives.  Then it happened that circumstance demanded we put things aside and pull forward.


My feet have dropped from the horror of an eight to the familiar five score which marks my everyday living.  We have switched on the TV and both agree that 2 AM TV is a bad thing.  Flipping through channels we catch a glimpse of a rather racy scene.   We both instinctively cover the other’s eyes and then laugh about the timing.  We are both reminded of the endless hours we spent side by side in Presbyterian Hospital of Plano for five months a year ago.  I was battling MRSA pneumonia.  I was on and off a ventilator five times.  The time spent was even more intense with the pain that had to go with minimum treatment because of the danger of slowing down my already compromised lungs.  I spent the time in consciousness on the verge of tears and the blessed unconsciousness my body would break down my strength and resolve.


Finally, the MRSA gave way and retreated from my body under protest leaving me so weak I could not pull myself up on the bed much less actually stand.  I was back to having the skills of an infant – powerless, moody and demanding.  Mom adapted and reverted to meeting basic needs better than the nurses.  She battled bedpans, lifted laundry and supervised medications.  I was unable to do anything for myself and I had to give up the idea of control and simply trusted my mom.  Mom had to give up getting cues or directions from me and had to rely on her instincts of being a mom.


During the course of the two year recovery, she re-parented me from the helplessness of infancy to the brooding of an adolescent.  My body genuinely had to relearn almost all of its functioning.  It made quick strides but with the markers we see as toddlers grow to teenagers.  Mom was there every step of the way, matching parenting style for the need of the day in way only someone with her years of wisdom could do.

Mom has me comfortable again, either through her actions or the medications and I again feel like a 40  year old man in the presence of my adult buddy, Treva, who is also my mom, nurse, caregiver, pill pusher, leg lotioner, dog walker, grocery store shopper, water fetcher, sock getter and very best of friends.


I know I am not alone.  There are hundreds of parents taking care of their disabled adult children.  Mom knows she is not alone and that other parents are providing parenting in some areas, for the first time.  But, I do not know anyone else who has established a stronger friendship across the generations and the crazy designs of family.  But, as for Treva and I, it’s been a time of growth.  A time of change.  And, a time, crazily, I would not trade for any other experience to be had.

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