My daughter, Lindey, had two AVM ruptures. Her first was when she was 27 years old when we discovered her AVM on January 4, 2013. She walked out of the hospital and came home with us on February 7th, 2013. Lindey went through outpatient rehab and eventually returned to work as a daycare teacher. She was sadly never able to return to her previous full-time job which was teaching 4K in the public school system.
Unfortunately, my daughter re-ruptured for the second time on July 29th, 2014 at the age of 28, but this time much worse. The bleed left her unable to move, walk, talk or swallow. She has a G-tube for feeding and she has PT, OT, and speech therapy twice a week each, but it wasn’t easy getting to that point.
After being forced to leave the hospital in September 2014, they sent our daughter to a nursing home (there weren’t many that would accept her, due to her condition). She and I spent six days in a nursing home in our current city where she became very ill and almost died. She got E-Coli and had a very bad infection. We ended up back in the hospital for another month, at that time my husband and I decided that we would never take our daughter to another facility again and that home was the best place for her. I didn’t know how to do anything and I was so scared, but, it was the best decision we ever made. We truly felt that home was best place for Lindey to heal and that’s where she was truly happy.
Here’s a day in the life of my husband and I. There are definitely good and bad days, but we have a routine now and it works for us.
A good day:
6AM: She wakes up, we change her and turn her and I give her meds through her g-tube and start up her first tube feeding of the day.
8:30AM: She finishes her tube feeding and gets all of her anti seizure medications and usually falls back to sleep (unless she has therapy)
9:00AM: Change/turn, brush teeth, sponge bath
9:30AM – 11:30AM: She naps
12:00PM: Give lunch meds
12:30PM: Change/turn and start up tube feeding
2:30PM: Finish feeding and change her (may have OT)
3:00PM: Work with eye gaze computer
4:00PM: Massage arms, legs and neck
4:30PM: Change and get her up in her wheelchair
5PM – 10PM: Bring her out in living area for the night (gets her dinner tube fed in her wheel chair as well)
10:30PM: Give or take a half hour (depending on how she’s feeling) I put her to bed for the night.
On good days I can get a shower in myself. On bad days, not so much. I have to call in prescriptions, keep an eye on refills, check blood pressure and temperature, amongst other things.
Our lives have changed, as hers did as well. My husband and I used to be pretty social and go out quite a bit. We have now turned into home bodies, but we enjoy each others company and having friends and family visit more.
What I want others to know, I am not a hero or someone to look up to. I’m a mom and I’m doing what a mother who loves their child more than anything in the world would do. It hurts me to see my daughter like this each and every day, as I’m only human. I would trade places with her in a heart beat if I could.
I wish she could be experiencing life like all of her 30 year old friends. I wish she was getting engaged, planning her wedding, getting married and having babies (like she dreamed of doing). Instead she is relearning everything she once knew. How to swallow, move her arms, fingers, legs, feet, toes.
I’m so blessed that my daughter is still here and I’m healthy enough to take care of her. Our faith is strong and we pray every day and night for strength and patience to get through this and to help our daughter live a normal, healthy life again someday soon.
The JNF support group has helped me through rough days and it has shown me that I’m not alone. I can always count on someone in the group to help me with any question that may arise and I hope I can do the same for someone else.
The story above was written by Lois Sternat about her daughter Lindey. The Joe Niekro Foundation wants to thank Lois and Lindey for sharing their incredible story with us. We hope Lindey continues to progress throughout recovery and thank you Lois for being an inspiration to other mothers and caregivers!
