When I was 15 I managed to get both Pneumonia and Mono at the same time. Apparently I managed to kiss the WRONG boy. After that I wasn’t ever the same. I was plagued with constant fatigue and constant pain. I went from being a straight A student and athlete to missing countless days of school and dropping off of my high schools soft ball team. It was heartbreaking to become a spectator in my own life as it fell apart. I had no idea how to even began balancing my disability with the rest of my life.
After I had my son I decided that I no longer wanted to be spectator and take an active role in my sons life. My disabilities have made parenting extremely difficult and literature for disabled parents like myself is sparse. I have had to come up with ways to balance this life and ensure that my family doesn’t feel the weight of my disabilities. Given the sparse literature I wanted to share what we have found works for us.
Balancing Mom Life and Your Disability:
- Daily “No Tech” hours- We make sure that we spend time together every night sans tech. No phones (for anyone!), no video games, no TV, nothing! Sometimes we play board games and sometimes we just talk. We make sure to do this even on the weeks my son is with his Dad.
- We tell each other when enough is enough. If we are out and I just can’t handle much more I tell my husband, and the same goes for him. If he needs a break he lets me know and I do the best I can. We also encourage my son to tell us if he is feeling the absence of one or both of us.
- We pay attention to signs. I listen to my body. Pushing myself to far does no favors for anyone. We’ve found a schedule that works best for everyone. My husband takes mornings and I take nights when I feel my best.
- As I mentioned schedules are important. You can’t always stick to them but having them in place can ease a lot of stress. I may love decorating my planner but don’t let it fool you. My planner keeps us all sane. Make sure that you create a balanced schedule that works for both you and your family. Are you best a night? Do what needs to be done at night, and allow your partner to take the morning schedule.
- We are honest…with everyone. Sometimes guilt can eat us alive. Being honest with those around us can help ease that guilt. My son’s teachers know that I am limited and so while I would love to be a room mom I just don’t have that ability. Instead I ask for projects I can do at home (preferably in bed). The conversations can be awkward trust me, know one likes to admit their faults, but in the end it is worth it for both you and your family.
- Allow concessions- and not just for yourself. There are nights we let my son stay up a little late playing video games or watching a movie with us in bed. If I’m having an extra hard day, I allow myself to spend it in bed with out guilt because if I push myself I am useless.
Are there days we mess up? Absolutely! No one gets it right, but it does help to make the good days more prevalent than the bad! What do you do in your family to help make the days a bit easier?