TBI – Survivors, Caregivers, Family, and Friends

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Caregivers SPEAK OUT! . . . Heather Sivori Floyd . . . Caregiver for her son, TJ



Caregivers SPEAK OUT!

Heather Sivori Floyd (caregiver for her son, TJ)

presented by

Donna O’Donnell Figurski


Heather Sivori Floyd – caregiver mom to her son, TJ

1. What is your name? (last name optional)

Heather Sivori Floyd

2. Where do you live? (city and/or state and/or country) Email? (optional)

Oldham County, Kentucky, USA

3. What is the brain-injury survivor’s relationship to you?

He (TJ) is my son.

How old was the survivor when he/she had the brain injury?

TJ was 7 years old.

11 TJ Floyd

TJ – Brain Injury Survivor – bicycle accident

What caused your survivor’s brain injury?

TJ was riding his bicycle when he wrecked into the back of his brother. He flipped over the handle bars and hit his head on the concrete. He went to “sleep” and never woke up until days after his emergency open brain surgery.

4. On what date did you begin care for your brain-injury survivor?

April 21, 2010

Were you the main caregiver?


Are you now?


How old were you when you began care?

Age stinks. I’d rather not discuss it. LOL!

TJ and Mom Heather Sivori Floyd

TJ – Brain Injury Survivor & his Mom, Heather Sivori Floyd

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

Yes – my three other children. I was also pregnant at the time.

6. Were you employed at the time of your survivor’s brain injury?


If so, were you able to continue working?

Yes – part time from home.

7. Did you have any help? Mother-in-Law

My mother-in-law moved in to help with my other children so I could care full-time for TJ with his therapy and doctors.

If so, what kind and for how long?

Well, she is still here.

8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?


9. Was your survivor in a coma?

I’m not sure of the medical term, but he was unresponsive until several days after his brain surgery.

If so, what did you do during that time?

I slept beside TJ in a chair. I was three months pregnant and heartbroken at the fear of the unknown. What was it they called it? . . . Ah yes, “the new normal.” I was trying to figure out what that meant. You don’t actually “get it” until years later.

14 TJ & Mom Heather Sivori Floyd copy

TJ – Brain Injury Survivor & Mom, Heather Sivori Floyd

10. Did your survivor have rehab?


If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)?

Physical, occupational, and speech therapies; also, hippotherapy (the use of horseback riding to improve balance, coordination, and strength)

How long was the rehab?

TJ still goes to therapy.

Where were you when your survivor was getting therapy?

With TJ

11. What problems or disabilities of your brain-injury survivor required your care, if any?

brain-injury-imageEverything. TJ’s brain bleed damaged the whole left side of his brain and parts of the right. He was left with severe impairments, specifically in speech, language, memory, and cognitive function. He has safety issues. Because of attention, safety, and balance issues, he has trouble walking without hands-on help constantly. He also has memory problems, speech problems, vision problems, physical issues from having hemiparesis (weakness on one side), and a lot more.

12. How has your life changed since you became a caregiver?

Things that mattered to me prior his accident are non-issues to me now. I often times feel I can talk with doctors and therapists better than I can with most people my age. It can be lonely, difficult, and frustrating at times to find common connectors in my personal relationships with friends and family. Some weeks are packed full of appointments. I’m drinking so much coffee I think my system will crash. Just this past week, I knocked out four appointments in one day. The most I’ve done in one day has been seven.

Is it better?

I would say yes – my life is better. Even though this is the most challenging task of my life, my son is innocent, happy, and laughs a lot. I believe having the privilege to care for my child, who is special needs, has been the most rewarding love one can experience. The impact special-needs children make are life-long. You learn so much through them in how they view the world.

Is it worse?

No parent ever wants this for his or her child. That being said, my life is better because of the profound true joy my son has brought me. The worst part, I would say, is having struggles that are hard to overcome. Watching him struggle is hard. I do whatever I can to help him when this happens. Also, the stress of future planning is scary and overwhelming.

18 TJ & Mom Heather Sivori Floyd copy

Heather Sivori Floyd & her son, TJ

13. What do you miss the most from pre-brain-injury life?

Our conversations. Most of the time, our conversations now are basic – food, eat, play a game, etc. I miss those conversations with my child that went beyond basic needs.

14. What do you enjoy most in post-brain-injury life?

Oh gosh, a child like TJ changes you in a profound way. The love you have in your heart for your child and others like him or her is something that is hard to put into words. I want to protect all of them forever. The world is full of evil people who would take advantage. I also enjoy trying to help others – to make it easier for the family who comes after us. There will always be another family. I’ve also learned to let the little things slide because, at the end of the day, they are just that – little.

15. What do you like least about brain injury?

Everything. It’s unrelenting and nasty. It takes a lot and rarely gives anything back.

16. Has anything helped you to accept your survivor’s brain injury?

Yes – TJ is happy. It is hard to justify my being sad or my crying all the time when he is happy. He lives in the now – not for tomorrow or the day before.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

1-divided-path-tracie-kiernanYes – especially my personal friendships and my relationships with family. I think we are on different paths in life now. While they talk of work and social events, I am constantly thinking What can we do to make it better for TJ and others going through this? My closest friends are now the caregivers and survivors I’ve met locally. We work together locally to make a positive change for the brain-injury community. I also work with an amazing team of ladies who help me run two support-groups for survivors and caregivers. I started my first one seven years ago. I was scared after TJ’s brain injury, and I needed to know I was not alone. I needed hope. The groups grew to over 30,000, and the rest is history. The friendship we have is unbreakable. Shout-out to my amazing admins and friends: Melissa, Shauna, Margie, Mary, Michael, Eddie, and Alex. Love you all! We’ve met many who have inspired us in this journey.

18. Has your social life been altered or changed and, if so, how?

Um, what social life?! Seriously, I have no social life. It’s too hard to connect with others.

19. What are your plans?

My #1 plan is finding the best long-term situation for TJ that will ensure the best care he can have when we can no longer do so. Personally, I also plan to continue making a difference locally. We have several projects we are working on, and I have some more ideas to help. I ALWAYS have an idea. I’m always thinking big. Nothing brings me greater joy than helping others. It is important for families to know they aren’t alone and that people care enough to try and make it better. I try to do my part because of my son and the many we have met.

What do you expect/hope to be doing ten years from now?

I hope to still be laughing and loving the small joys in life with TJ. Hopefully, we will have made a big impact locally and beyond for the brain-injury community.

20. What advice would you offer other caregivers of brain-injury survivors? Never Give Up

Never give up. Let the small things go. Love deeply, and give your all. If you don’t, one day you will wish you had. Be the voice for your loved one. Never let “no” be an obstacle; there is always a way. If the door closes, kick it open. Most importantly, hang on when the days are hard and you feel you cannot go on. You can, and your survivor needs you to. Connect with other caregivers so you don’t feel like you walk this path alone – because you don’t. There are many who walk it with you daily

Do you have any other comments that you would like to add?

I think I’ve said what’s important for caregivers to know.


(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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SPEAK OUT! Guest Blogger Heather Sivori Floyd . . . . . Thoughts from a Caregiver Mom

Thoughts from a Caregiver Mom


Heather Sivori Floyd



Donna O’Donnell Figurski


Girl Blogger cartoon_picture_of_girl_writingThere 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 1

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 Floyd Survivor 021116

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 Floyd Survivor 021216

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 Floys TJ 4

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 & TJ

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.

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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