Most parents spend their lives worrying about their children’s success, but parents of disabled children often worry about their children’s survival.
For this dad, caring for his disabled daughter is a labor of love (as well as a testament to how loved his daughter is), but it’s also a race against a clock he knows is winding down.
He’s navigating a unique brand of caregiver burnout that has led him to a thought most would find unspeakable, but I think it underscores the immense love he has for his little girl.
Four years ago, this man’s daughter got in a serious car crash with her friend’s mom. His daughter broke her neck in the accident, and she is paralyzed from her waist down, though she can use her right hand.
Every morning when he sees his now 16-year-old daughter, it wrecks him to know this is her life, and it’s not going to get any better for her.
“I love her so much, and it pains me because she cries about her situation every single time, and every single time she cries, I feel like someone is grabbing my…heart and pulling it out of my chest,” he explained.
“Every single day I help her get around, I put her in bed and I take her out, and I even shower her sometimes when my wife isn’t around and I dress her up and do her hair and makeup and everything, I never complain about it because she’s my baby and I’ll keep helping her till I physically can’t anymore.”
“But it just kills me to think about if I’m gone what will happen, because I have many health issues of my own, heart problems run in my family and men usually don’t make it far past 50 in my family, both my dad and grandpa died in their 50’s and my oldest brother died last year of cancer at 56, and I might very well be next, I’m 48 now.”
He’s scared to leave his daughter all on her own. She’s his youngest, and while he has three other children, they all have their own lives and have made it clear they are not going to take on caring for their disabled sister, as it’s too much of a stressor on them.
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All three of his kids have stated that when he passes away, they will be putting his daughter in a care facility, and while he can’t exactly hold it against them, he hates that his daughter’s future will look like that.
The grim reality is that his daughter will not be loved and cared for the way he and his wife do after they are gone. He can’t picture his daughter getting married or finding a man, since, although she’s an amazing girl, she’s too much work.
It pains him to be this honest, but he wishes his daughter passed away in the car accident so that it would have spared her the hardship of being paralyzed. She would have avoided suffering.
“No parent ever wants to outlive his child, and I feel like the worst piece of [garbage] for this, but I wouldn’t mind outliving her, at least I’d know she was finally at peace, and I wouldn’t die while wondering what will happen [to] her,” he continued.
“I hate myself so much for these thoughts, but they’re just not going away, especially with all my health issues. I’m in pain most of the time, all my test results are bad, and I’m just tired, and I’m terrified for her, not of dying itself.”
He’s sadly right; nobody is supposed to love you as much as your parents, but the love he has for his daughter is a beautiful thing. And the guilt he has around watching his daughter suffer is normal; it doesn’t make him a bad dad to admit he wishes he didn’t have a front row seat to that on a daily basis.
It also makes sense that he’s still grieving the life his daughter could have led if she weren’t disabled, but that doesn’t automatically mean her life has to be lonely.
I think it will go a long way toward helping his daughter with her self-esteem and happiness if he can seek out community programs in his area for kids with disabilities, so she can build a social circle.
I also wonder if he could get her into occupational therapy or find her a therapist to improve her independence and mental health.
That all might go a long way in helping him and his daughter see that her disability and her need for help with caring for herself don’t automatically have to sign her up for a life of misery.
What advice do you have for him?
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By Bre Avery Zacharski
Hi, I'm Bre, Chip Chick's CEO! I have a degree in Textile/Surface Design from The Fashion Institute of Technology, and... More about Bre Avery Zacharski
