Friday, April 20, 2007

Caregiving: parent caregivers

How do I describe a parent’s smile that can communicate love more effectively than words yet mask at the same time the years of exhaustion and mountains of worries? …

 

While this journal and associated emails have enabled me to “meet” so many fellow caregivers, I am always humbled by the lives and stories of parent caregivers caring for children with special needs whether physical or mental or both.

 

More than parents, more than caregivers they are unending sculptors of love and dignity. … Wearied that you may never get it right because there's always so much more to be done, yet struggling forward trying with everything you have.

 

Boundaries of time are abstract to most people. Statistically caregivers, in general, are increasingly outlived by the people they care for. Lack of immortality is a distant cloud on the horizon no matter how beautiful the day. You do not have to be a rocket scientist to do the math of anxiety for parent caregivers.

 

Many battle against a disease with a shortened life expectancy. The lonely sleepwalk through time after the loss of a child before one is ready to carry on again is unfathomable.

 

Tomorrow should be untold. Glimpses into a future demand extraordinary courage, vigilance, and tenderness.

 

Too many children ‘fall through the cracks’ of societal safety nets for any variety of reasons. The network of teachers and programs of support is even more critical than for adults, and unquestionably as bureaucratically maddening to access and maintain.

 

Unexpectedly this journal has also introduced me to the stories and lives of people working in that support network. While bringing care, education, and respite time to these amazing families, I am sure it is not a job they can just close the door on at closing time.

 

I was honored recently to share a meal with a parent caregiver and a child diagnosed with autism.    How do I describe a parent’s smile that can communicate love more effectively than words yet mask at the same time the years of exhaustion and mountains of worries?   It transcends parenting and caregiving, it redefines love.

 

Caregivingly Yours, Patrick Leer

 

5 comments:

  1. have a great weekend:)

    Deb

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  2. Thank you for giving your attention to an area that many people hesitate to discuss. I have found that in many cases, it is a mixed bag of emotions for parents of children with disabilities I have known. It is heart wrenching to see your child go through all they have to deal with, or their death, but just as troubling is knowing you have to leave your 'child for someone else to care for!  I remember signing my son  up for a group home and crying about it even though the decision would be years and years down the road.
    Jackie

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  3. Your reflections on this subject always humble me. Thank you for keeping me connected to the people whose lives continue without me at the end of a school day. I see the exhaustion in their eyes, and hear it in their voices... but then, a positive, hopeful word slips from their lips, and I know I should never give up on their kids either, no matter how tired I get. It shames me not to come up with the word of hope first. They support me as much as, or more than, I support them. My assistant principal is the parent of an autistic child. I remember when, before he became an asst principal, he was a classroom teacher, and I remember his concern for his son by the time the boy was two years old. He was diagnosed by age 3. He's in second grade now, and if I didn't tell you, you wouldn't know he was autistic. He has come so far. It is crucial to identify such children early. Early intervention is the key. Bea

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  4.   Journals really open up your world and brings people together.  It is a good thing for support and to give support.  I meet so many caregivers in my job.  Thanks for giving us this side of the coin.

                   Julie

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  5. ...............oh so true, after over 40 years of teaching I have seen the story repeated so many times.  It is humbling, my job is so much easier that if a child was involved.  But a child offers hope, and that is inspiring.

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