Shared story: Somedays I’m just weary, so I take it one day at a time

Today’s Shared Story is from Gretchen Moffatt,
associate professor and director of humanities at Donnelly College, Kansas City, Kansas.

Although my situation is different in that I'm a caregiver for my now-adult child, not dealing with a spouse with Alzheimer's, I do understand to some degree the demands of being a caregiver.

How it started

As an infant, Raef (who turned 21 in February) had a seizure disorder that caused 25-300 seizures a day. When he was eight months old, he had radical brain surgery (hemispherectomy) and has been seizure free since surgery. (Raef's name means “God has healed.”) As a result of the seizures and surgery, Raef has cerebral palsy. He was also born with a genetic condition called Neurofibromatosis Type I, which causes tumors to grow on the nerves. When he was 2 he underwent 14 months of weekly chemo to treat a tumor on his optic nerve and he lives with very limited vision

Life today

There are many days now when I am simply weary. Days that I dread getting out of bed and cleaning up Raef or washing out one more pair of underwear. Juggling doctor and service provider appointments while working full-time teaching at an inner-city college. Trying to make sure Raef has activities and transportation so he doesn't have to sit home alone while we're working. Advocating for him with others. Answering the same questions over and over again for him. (Thank goodness Alexa can answer some of those questions!) And knowing that this is my role for the rest of my life.

Then I feel guilty for feeling impatient and weary because there are so many parents in my situation who have it harder or who have lost a child. They would gladly be in my shoes.

There's also the worry of who is going to take care of Raef when I'm not around anymore.

I’m learning

But having Raef is such a great reminder to depend on God. Taking care of Raef has never been something I could do on my own power. I can't look too far ahead. I just have to take it a day at a time and focus on the blessings.

Raef brings great joy into so many lives and has taught me so much. God has brought people into my life to help shoulder the burden, most importantly my husband Brian, and increasingly, Raef's sister Gwyn.

That's my caregiving story. I don't have any great wisdom for other caregivers, but I know God is faithful, and it helps to share our stories.