SPEAK OUT! Guest Blogger Heather Sivori Floyd . . . . . Thoughts from a Caregiver Mom
Thoughts from a Caregiver Mom
by
Heather Sivori Floyd
presented
by
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.
Heather Sivori Floyd – Caregiver
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.
TJ – Brain Injury Survivor
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).
TJ – Brain Injury Survivor
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.”
Heather Sivori Floyd, caregiver for her son, TJ
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
Heather Sivori Floyd and her son, TJ
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.
Disclaimer:
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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I was eighteen when I had my traumatic brain injury (TBI) in a car accident in 1985. I was brought back to life once. I was in a coma for fifty days. I was in a wheelchair for one and a half years. I have memory problems. My body drew up into a fetal position. It took seven years of painful surgery and therapy and close to thirty procedures to straighten my legs, feet, arms, and hands. Thirty years later, my claw-shaped right hand looks like it has rheumatoid arthritis, but I use it. I write with that hand and walk with a cane in it. Three years after my accident, I went back to college. It took three years of difficult work to get my first Associate Degree and two years for a second in Mechanical Drafting, AutoCAD. I worked fifteen difficult years doing AutoCAD. Not one day since my accident has been easy for me. I am proud of what I accomplished, and I hope my story will be an inspiration to others.
inspired me to go forward. What a sport does is teach sportsmanship, pride, respect, and loyalty, and it inspires one to do better.
Rooms or even in morgues because they fall while walking and hit their head. Should every man, woman, and child wear a helmet simply to walk? It seems just as foolish to end all athletics.
Ann Boriskie, a TBI survivor of more than 17-years says, “Get involved. Volunteer.” “By helping others with a brain injury, you truly help yourself in so many ways.” Ann is the Brain Injury Peer Visitor Association Director and her motto is “YOU CAN!”
Lack of awareness of new knowledge has allowed society to continue what some of us now know to be dangerous practices with respect to children. To understand what we mean, watch these short videos of children practicing or playing American football (
coaches. No parent would deliberately put a child’s life-trajectory at risk, but what if the parent lacks awareness? The good news is that apparently society’s awareness is growing quickly. 
but for many survivors of brain injury, the holidays are a stressful time, leaving them anxiety-ridden, exhausted, and distressed.
daily basis with the confusion that often accompanies brain injury, the holiday season can be an utter nightmare.
wide-eyed, crazed shoppers and their cacophonous noise is not for the faint of heart. The uncertainty of whether Great Aunt Sally will love the little pink unicorn that you found in the bargain basement of Marky’s is tying up your brain in knots. For those who live in colder climes, weather may play a role, as blizzards and freezing rain make it difficult to leave the house and add the pressure of when to get the shopping done. The cold, gray skies can make life seem dreary, altering even the best of temperaments. But the holidays can be conquered, and a survivor can have fun if he or she tones it down a little and takes the holidays in itty-bitty steps.
Perhaps the six-foot tree that a survivor trekked out into the woods to cut down can be replaced by a three-foot artificial tree – something that can be
assembled in less than an hour, instead of enduring the stress of an all-afternoon trip. Maybe the family-gathering to eat latkes must be limited to the immediate family to minimize the chaos that a large gathering might cause.
Make a list of the things you want to do, and prioritize. Choose to do only one activity or job each day. Decide when you are best able to do the job. Are you better in the early morning hours – when you have more energy? Or are you like me – alive at night? That’s when I get more done. Everyone’s different, and only you will know what works best for you.
Don’t set your expectations too high. That is a guarantee for failure. Instead of baking ten dozen cookies in one afternoon, spread out the job by allowing several afternoons to accomplish the task. Or better still, make a smaller portion of the cookies. Set your sights lower. By planning and pacing yourself, you can avoid becoming overwhelmed, depressed, or simply exhausted.
Instead of wrapping a present the traditional way with giftwrap and ribbons, pop the gift into a pre-decorated box or a gift bag and stuff some colored tissue paper around it. It will be lovely, and it is so much easier! Do you really need to have a twenty-three-pound turkey with stuffing and all the trimmings? Probably not! A simpler meal will taste just as good and will be enjoyed by all simply because you are spending precious time together.
The holidays are just around the corner. Though they can be fun for many, for others this time of year is filled with extra stress. There are ways to lessen the anxiety and make the holidays more enjoyable by changing some of your old holiday traditions. My panelists, survivor, Lisa Dryer, and caregiver, Lisabeth Mackall, and I are going to discuss different ways that we make the holidays more fun with less stress.
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