Thoughts from a Caregiver Mom
Heather Sivori Floyd
Donna O’Donnell Figurski
There is nothing sweeter or more rewarding in life than spending time and helping those with special challenges.
I do not like the word “disability,” so I use “special challenges.” Why define people by what they are or are not capable of? While some days my heart hurts from my knowing the challenges that TJ (now 13) will face in life, my heart is actually very full from my spending the time with him that I do.
As I tucked TJ in the other night, I just sat there in a moment of silence and reflected back on everything we have been through. He has an innocence about him now. But I was overcome with a moment of sadness thinking about all that was ripped from TJ at such a young age (7 years old) and the special challenges that he will be faced with in adulthood.
I try not to think like that, but sometimes a parent does. I would say that it is quite normal. The burden a parent carries when advocating for his or her child with special challenges will at times take your breath away. You constantly question if you are doing the right thing or if you could be doing more. You realize that, even into adulthood, your child’s ability to have a voice is gone. You will forever be your child’s voice. You accept that, and you do what you have to do to make that voice heard – even if it means roaring.
Over the years, people have told me not to worry about the future. But it is never a possibility. I know my mom-friends in a similar position will understand this. When in a position like this, you have to think about it. It’s really not an option. You are the sole caregiver, and if you do not make a plan for the future, no one else will. Also many programs to help children like TJ as an adult have a mile-long waiting list (meaning years).
Being TJ’s sole caregiver has been challenging and exhausting but, at the same time, very rewarding. I have learned so much about myself and my desire to help others. I have learned from TJ about the human spirit and not giving in. He amazes me daily. Yes, things are very elementary for TJ now. His day consists of food, cartoons, therapy, etc. – very basic needs. In-depth conversation has never been a possibility with my son since his brain injury so mercilessly ripped away his dignity and his ability for independence. The list goes on. But that doesn’t mean we give up. TJ certainly has not.
With love and persistence, TJ has defied the odds. After all, 60-80% of patients typically do not survive an acute subdural hematoma, even with surgery. TJ did. He continues to defy the odds and what we were told would be our “new normal.”
I am often asked how I do it. (It is a general question, and it is the most-asked question from many family members and friends over the years.) I just do it. You do not have a choice. Many times your heart hurts like no other, but you keep going because you are it for them. There is no one else. You learn to draw on inner strength. You learn to keep it together because you can’t afford to break down.
In my case, I learned from my son how to love life and still laugh. TJ does daily. If he can, then so can I. It doesn’t make the special challenges any easier or the decisions to be made any
less hurtful. What it does is fill your heart with an overwhelming love. I am honored to know a person like TJ in my life. He is the definition of courage, strength, hope, and love. I’ve said it before, and I will say it again: He is my hero. To overcome daily adversity with a smile on his face makes him downright amazing. No matter where he ends up intellectually, TJ will always be pretty amazing to me.
Thank you, Heather Sivori Floyd.
Any views and opinions of the Guest Blogger are purely his/her own.
(Clip Art compliments of Bing.)
(Photos compliments of Heather Sivori Floyd)
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