I am the mother of a 13-year-old girl who has Cerebral Palsy. My daughter Bella uses a wheelchair, is non-verbal and is fed via a feeding tube. She has an amazing sense of humor, is very smart, likes adaptive sports like skiing, wheelchair soccer and biking, and is the most patient person I know!
As my daughter’s primary caregiver I hear from people so often, “I don’t know how you do it,” or, “I wouldn’t be able to do what you do,” or the best one, “she is so lucky to have you.” I usually cringe at those; of course everyone who says these things would do the same thing in my circumstance, and I honestly feel I am the lucky one, not my daughter. What I never admit to these people, though, is that with caring for my daughter I face many fears every single day of my life.
I fear that I someday will not be strong enough to physically care for her and lift her. I love the physical connection that we have when lifting her. She cannot put her arms around me to hug me, so lifting and transferring gives us that physical connection. I am constantly warned that I will ruin my back if I keep lifting, and I fear that even as I smile and say I’m strong, it might happen.
I have come to learn that at every stage and age there are challenges with caring for my daughter, and I have always had the attitude of worrying about the current ones and leaving the future ones to worry about in the future. But I fear that way of thinking will haunt me! What would I do if I ruined my back? Who would care for Bella if something happened to me? Would she have to live in a care facility?
I fear more than anything not being here for her anymore. Who will care for her? Will that person know what her favorite shows are? Will that person know what her hobbies are and make sure she is able to do them? Will that person understand her amazing sense of humor?
I fear that I will lose my job because of all the time I miss going to all the appointments. I fear that if I don’t lose my job, all my co-workers will resent me because of missing so much work. I love my job and need it as much financially as for my sense of self-worth as a functional human being separate from parenting a child with special needs. With the fear of losing my job comes my fear of losing my house or wheelchair van.
I fear that on one of my many road trips to a specialist two hours away from home, that my nine-year-old wheelchair van may fail on me and break down. It’s not like we know anyone who happens to have a wheelchair van available to come rescue us.
Many times every single day I fear that I am not understanding her. I worry that she has to settle with what I think she wants, or what I think she needs. It must be so frustrating for her, but she is so kind and patient. I know I don’t always get it right. I want to get it right. Am I trying hard enough? Do I take advantage of her kindness and go the easy way? I fear I sometimes do.
Another huge fear that I have is making all the difficult medical decisions. It is absolutely terrifying making decisions that could either make a huge positive life difference for her or could cause complications that will give her even more obstacles or more pain than she already has to deal with. This happened recently, and she went through so much and had so much pain that I am now so scared to continue considering another procedure that we have been exploring for years. It could be life changing for her, or she could have complications. Am I making the right decision? I never know!
The fear that probably causes the most obstacles for me is the fear to show weakness or neediness. I put on my happy face and say all is fine, but in reality I am exhausted, overwhelmed, lonely and scared. I don’t know why I fear showing weakness, but I’m afraid it might be because I don’t want people to think that my daughter is a burden to me. She isn’t a burden to me, but that doesn’t mean I couldn’t use support sometimes.
With all my fears I will happily continue to care for my daughter the best I can every day because she is truly one of the most amazing people I know and deserves the best!