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!

Blogging Against Disablism Day 2007

Today is Blogging Against Disablism Day. (well, technically it was yesterday - but I haven't gone to bed yet so that qualifies as today, right?) I have been thinking of what to write. So many things came to mind that I could write about my daughter. She is so unique and has so many different special needs that she doesn't fit into one particular category. Since I post so much about her, I decided to write about a boy that I grew up with who had Down Syndrome. I'm not mentioning his name since I didn't get a chance to talk to his family yet, but I just have to write about him. He was such an inspirational person and his parents were amazing with him. This boy and this family helped prepare me for my daughter. I believe with all my heart that God had a hand in it. HE knew I would have a daughter with many medical difficulties along with mental and emotional trials. I was raised knowing that each and every person is important. God loves every single one of his children. Our "disabled" are in fact our teachers. Here is a tribute to my friend:

I was raised in Mexico in an area where they didn't have a special education program for children with disabilities. They didn't have the medical facilities nor the money to provide such. I was fortunate enough to know a family who's son had Down Syndrome. The parents did not institutionalize him as the doctors recommended. They kept him at home and did the best they could to care for him. They loved him. They brought him to church and allowed him to be active in the community. He could walk, ride a bike, swim, smile, laugh and hug. Boy could he hug! I received many of those strong hugs. He wasn't verbal in the sense that you could understand him very well but he could understand some of the things you said to him. When going to his house he could understand whether you wanted to see his mom or dad. He would ride his bike to the corner store and purchase candy and snacks. His parents had set up an account for him and he was allotted a certain amount of treats a day. We lived in a farming community and this young man's dad took him along to work. His dad took him everywhere. In fact, I don't even recall seeing the father with the son.

One time a field caught fire and this boy was missing. The community gathered together to fight the fire and find the boy. He was found safe and I believe he was unaware of any danger. I still remember the relief I felt when I found out he was safe. I worried about him. I didn't know if he would understand the danger or if he would know how to get away from the fire. Would he become disoriented? Would he be afraid? What a relief that he was safe. Safe and loved.

This boy was a few years older than I but he had two cousins who were my age and so the boy attended church classes and activities with us. I don't recall exactly how old I was when this special young man died but I do remember that our age group was asked to sing at his funeral. We sang a song called: Families Can Be Together Forever. We were honored to sing at the funeral and we sang with all our hearts, with tears in our eyes and on our cheeks. One thing that impressed me the most was how many people this young man had touched in his short life. The chapel was full of mourners so they opened the over-flow area. That quickly filled up so the back cultural hall was opened. There was standing room only as people filled that area and both of the foyers were full as well. As I stood and sang with my friends in front of all those people I knew that this was a very special boy. I was so fortunate to know him and his family.

One boy with Down Syndrome touched so many lives. One family who wouldn't listen to the "experts" and kept their beautiful son at home and loved him. One community who didn't see this boy's disabilities - only his abilities. How I wish every community, every family and every child with a disability could live this way.