Meet William from Tennesse. William has a 2-year-old son, Landon, who has severe hemophilia A.Â We asked William to share some insights on his life as a caregiver.
What is your day-to-day schedule like?
For the most part, our schedule is regular. There are some days that are longer than others. Since Landon is on on-demand treatment we just keep an eye out for bruises and joint bleeds. Landon is in the stage where he may or may not need a nap. I just switched him to a toddler bed and bedtime has become fun. Most of the day includes Paw Patrol or “The Show” as Landon calls it, outside with the four-wheeler, racecar and dirt!
What are your issues/concerns for the person(s) you care for?
One issue I currently have is the terrible twos. Landon doesn’t listen unless he wants to and he is very good at ignoring you. I’m always concerned about Landon having a bleed. The biggest concern is a joint bleed since he is so active and wants to go and climb on everything. He gets a ton of bruises, which take forever to go away. We have been lucky he hasn’t had that many bleeds. Right now Landon’s treatment is on-demand infusions so he only gets infused when he needs it. I figured when/if he starts regular joint bleeds then we will switch to prophylaxis.
What are your issues/concerns as a caregiver for yourself?
The one and only concern for me is getting burned out. I’m a single parent and full-time student and of course including with dealing with my son’s hemophilia leaves me stretched thin.
How do you ask for help if needed?
Asking for help is easy because of the awesome support system I have with family, friends, and community members. My parents have been very helpful through everything.
Do you get to take time for yourself?
It is very rare that I get to take time for myself. When I do, my parents babysit Landon while I go out. I spend most of my time advocating for the community, attending intensives, writing emails and letters to Congress, and helping the Tennessee member organization. When classes start in January then I’ll need more time to myself to read, study, do homework and take exams.
How do you juggle it all?
I think the only reason I can juggle so many things is a solid support system. My whole family supports my decisions and me and is always willing to help when needed.
In honor of National Caregiver Month, we’ll be featuring “Caregiver Heroes” throughout the month of November. While all in the bleeding disorders community are heroes in their own special ways, these folks are being given a special shout-out for the ways they take care of their loved ones and themselves.