Disability - A physical or mental condition that limits a person's movements, senses, or activities.
It has taken me 20 months to freely admit this, but Hannah has a disability. I know why it has been hard for me to admit it. Because for the first 3 years of her life, she was perfectly capable of doing anything and everything a child can do at those early stages in life. She started talking early, walked on time, loved to color, hardly ever cried or got hurt. She was every parents dream child. I pictured her being an accomplished dancer and talented artist.
But in January of 2012, those dreams were put on hold as we carried our little girl around who no longer had the coordination to walk on those perfect little legs anymore. Our hopes were kept alive when doctors told us that children with Hannah's diagnosis are usually up and running again in a few weeks. Weeks past, then months, and finally relief and excitement set in as we witnessed our precious little girl take her first steps again. For a long time I referred to her as temporarily disabled, because we were assured she would be back to normal again soon. But more time has passed and we realize that her condition might not be as temporary as we hoped.
Many parents with disabled children at times probably wonder and imagine what their child would be like if they didn't have their disability. Maybe Jake and I were blessed because we don't have to wonder, we got to see Hannah and watch her thrive for years. It is still so hard for me to look at photos and videos of her before she got sick. I don't think those reminders will ever get easier. But I take comfort in the fact that even if she doesn't fully recover in this life, because of our Saviors sacrifice for us, she will be perfect again.
Hannah is not disabled. She has a disability, but she will not be
defined by this disability. Yes she has a physical impairment that makes
it hard to do certain things that require fine motor control, but she
has it in her to do all that she wants. I can't wait to see all that she
will accomplish. I have learned so much from her and I am forever
grateful that she is my daughter.
7 comments:
What is her disability? It is always hard, but I like how you said she as a disability but is not a disabled person. Thanks for posting this on your blog!
I was touched by your post. What a lucky girl to have such loving good parents, and what lucky parents to have such a special girl to give them such incredible perspective on life. I am so impressed by you and your sweet family!
This post had me in tears. You and Hannah are both my heroes. I seriously don't know what I ever did to deserve having you both in my life but I am so grateful that I do. :-)
This post had me in tears. You and Hannah are both my heroes. I seriously don't know what I ever did to deserve having you both in my life but I am so grateful that I do. :-)
I am sure this is not an easy thing to accept! Hannah has always been such a sweet girl and beautiful girl. She has two awesome parents to guide her through her challenging life. You are doing such a great job giving her normalcy now with preschool, dance, and soccer!
Gretchen you are amazing! Hannah is so blessed to have you as her mom.
I happened upon your blog while looking up ACA which our son was diagnosed with. After 1 year, and partial success with IVIG we finally took him to the National Pediatric Myoclonus Center (omsusa.org) in Illinois. There, they correctly diagnosed him with OMS, instead of ACA and started him on a more effective treatment. I don't know the details of your daughter's condition, but I urge you to visit the omsusa.org website and contact them to see if they could be of assistance.
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