What do you do when no matter what you do will not cure your child? This is the question that haunts my mind in the late hours of the night, when the kids are asleep, the doctor appointments of the day are complete, and I can finally stop and think—in silence. The guilt and anger thunder in the silence because despite my efforts, you (I) feel failure because your kids are still suffering.
Two of my three children have Hypermobile Ehlers Danlos Syndrome (hEDS), an incurable genetic condition, along with several comorbidities, that results in daily chronic wide-spread body pain, crushing fatigue, joint dislocations, migraines, digestive dysfunction, heart rate regulation issues, and a myriad of other symptoms. This means between the two of them we have a team of over a dozen specialists and easily over 100 medical appointments per year.
Raising a chronically ill child feels impossible, it changes your life, it challenges your faith, and it reminds you of how very human and mortal you really are. For me, having kids that wake up in pain, fight through the day in pain and go to sleep in pain is daily torture. When they were born, all perfect and squishy, all I imagined was a bright future. Sure, I knew they would stress me out, misbehave, get ear infections, hide homework… They would be kids and do what kids do. And I would be a mom, and do what moms do – take them to school and play dates, count to 3 when they misbehaved, dry tears when they didn’t get a part in the school play, and cheer when they spelled the words right in the spelling bee. But life changed. The kids I expected and the mom I thought I was destined to be were and are drastically different.
Now life is about scheduling and rescheduling doctor appointments, working with school staff to create and enforce Individual Educational Plans, saving a space in the garage for wheelchairs and crutches, buying gluten free food, cancelling plans and calling kids in sick when their bodies hurt too much or they can’t find the energy to get out of bed, and yet, still trying to raise teenage kids with teenage needs. It’s too much for one mom, but what choice do I have? I must keep going. For them. No matter what. Even when it feels impossible. Even when it seems like my efforts will never be enough. I’ve had to learn so much and teach myself so much. Now my hope is that I can share my story to help another mom realize that it is ok to be mortal, albeit a super mortal. It’s ok to doubt and make mistakes, and it’s okay to forgive yourself for not being able to fix your kid.
In her next column, Johanna will talk about a very challenging day in her and one of her children’s lives.