Tuesday, May 31, 2022

Forever Young

I first wrote this on 8-10-2015 but just realized that I never published it!  So here it is!  

 I'm preparing to record an episode of "Heart to Heart with Anna" with Anna Jaworski this afternoon.  The topic is near and dear to my heart, "Forever Young: Dealing with Cognitive Impairments and Congenital HeartDefects".  (Publish date: February 26,  2016)

As many of you know, Jessica was born with DiGeorge Syndrome which can cause CHD (congenital heart defects), learning disabilities and cognitive impairments.  Jessica also suffered 2 strokes, each of which caused some severe impairments including inability to learn speech, blindness, paralysis, etc.  We were very blessed that through a lot of hard work and prayers, Jessica regained most of the physical deficits that were lost but she never progressed cognitively beyond the age of a 7 - 8 year old leaving her "Forever Young". 

I had to be creative in teaching her how to do things because she didn't learn the way most children do.  After she had her strokes I had to re-teach her how to sit up, walk, talk and everything else she had learned up to that point.  It was devastating to see her struggling and she would get upset when she tried to do something, such as grabbing something with her left hand, that she knew she used to be able to do.  She would often get mad and throw her left arm aside as if to say, "This doesn't work anymore so get it out of my way!"  We would have to hold her right arm down and put a toy she wanted out to her left side so that she would have to use it.  We would have to tell her to use it and lift it up for her to encourage her to use it.  She would get tired easily because of her heart issues so we would have to do short segments throughout the day.  Since the physical therapist only came once/week or once every-other week, I would have to work with her numerous times a day.

Sometimes I would work on one word with her, showing her how to form the word with her mouth.  She would try and try again until she would get frustrated.  I worked with her when I fed her, when I bathed her, when we would do our other daily therapies and before I put her to bed.  Some days I would go to bed exhausted, wondering if it was worth it.  She would finally learn that word and she would be soooo excited!  We would say it over and over again but sometimes she would somehow lose it in her sleep and not be able to say it clearly the next day.  We would work again until she got it back.  This was my life for years.  I knew that if I didn't give my all to teach her, nobody would and she wouldn't be able to communicate.  She craved communicating with others and I knew that Heavenly Father was counting on ME to teach His child. 

Jessica was a loving, innocent, thoughtful, imaginative little girl who lit up any room she entered.  She took pleasure in the little things in life and enjoyed spending time with others.  I'm so very grateful that she was blessed to have regained most of what was lost with those strokes.  Her life was difficult enough already and the strokes were devastating.  Watching her work so hard, gave me the strength I needed to work hard as well.  I rejoiced with each little bit of progress she made.  She really taught ME how to be tenacious and to push forward.  I'm grateful for everything she taught me and for each moment we had together... and she's with me still!

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