Here I sit with my disabled son. I love him and yet, I’m frustrated to the brink of a primal scream. I know, I should be ashamed of myself. Not everyone can do this. This job that I have without monetary compensation, but lots of spiritual reward.

I’m thankful for his delightful demeanor. He likes to laugh and play using my hands to clap. He seems to be happy all the time, even when he’s sick. He gets sick often. With music playing, he bops up and down with the rhythm of the song. He’s feeling better after having a miserable week of refusing food, drink and anything fun. His ear infection seems as though it left, but I’m still required to be at his side.

He’s weak from not walking. Watching him all night has left me drained and tired, ready to use the hard wood floor as my bed and pillow. But I hold off and wait for the opportunity to have someone else watch him while I close my eyes for moments at a time. My hope for sleeping at a normal time has slipped through my hands as I receive a phone call from the night nurse. She can’t make it tonight. It shouldn’t matter. I usually work two nights and two days in a row, but it does matter.

Maybe it’s because I was looking forward to a lost opportunity to sleep for more hours than the typical four. Or maybe it matters because the five consecutive years of his needs have escalated to a cliffhanging level.
Irony can be a humble teacher because as of this day (4/18/21), I am the official night nurse. I have all seven nights to watch. My night nurse is now the day nurse. Life has a funny way of teaching us to appreciate the situation at present because life happens.

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These words ~ from 2/21

Update:

Depression comes in many forms and this isn’t any different. It’s hard to believe that a caregiver can have depression. Their job is to care for for others who need help. 

If a caregiver isn’t selfish in the sense of taking care of self then depression has a way of creeping in. 
To counter this, exercise really can help.

My brother sent me two books, which have helped me to fight against the fall-ins of caregiving. 7 Caregiver Land Mines And How You Can Avoid Them by Peter W. Rosenberger helps me with the biggest challenge of preventing myself from taking everything personally. Yes, I changed to present tense because I still read this book repeatedly for memory.

Lack of sleep is the biggest cause of memory decline. As demanding as caregiving can be, I still want to remember all the laughing moments and growth moments when my son demonstrates progress.

His second book, Hope for the Caregiver, has encouraging words to keep me going through it all. Within this book, chapter four is very important. It’s titled “Your Decision To Serve”.

Believe it or not, if you’re a caregiver you made the decision to serve and not run from the challenge. “According to the greatest, and most often-quoted source in human history, the carpenter from Nazareth, you are among a group He calls ‘the greatest of these’.” (p. 40). We, caregivers have reached the pinnacle of “earthly success “.

Take heart. Be encouraged and take care of yourself.