Recently, a group of friends was talking about their perfect Saturday night. It was clear that their idea of a perfect Saturday night and mine are worlds apart. They talked about fancy dinners out, catching a show, sharing a bottle of wine with their spouse, and coming home to an empty home because the kids are staying with grandma.
I laughed a little and thought to myself that once upon a time I pictured the same things for my perfect Saturday night.
That was a million years ago.
Now, my perfect Saturday night is staying home. The nurse is on duty and my daughter is having a good night. My husband does the dishes without me even asking. Maybe we watch a movie and then we’re in bed by 9:00 and asleep by 9:30. On my perfect Saturday, no one wakes me up on Sunday morning. Instead, my husband gets up and relieves the night nurse so I can sleep in.
My daughter’s medical issues are very complex, and we were never one of those families that send the kids to grandma’s for the weekend. We do have nurses who come to our home, but we typically need to stay home to cover the times between nurse’s shifts, or in case a nurse is out sick or just does not show up.
It takes us weeks to train a new nurse on our daughter’s needs. None of our family members has the time to learn how to take care of her. Sometimes I am sad about my family not being more involved. Ultimately, she needs trained medical professionals to manage her needs, so I guess it’s best that we don’t rely on family.
Most of my fantasies these days are sleep-centered.
Oh, how I would love to go to sleep when I am tired and stay asleep until I wake on my own. No alarms chirping in my daughter’s room, no snoring coming from the other side of the bed. Just me in a cool, dark, quiet room and a warm comfy bed. I can picture it now: thick blankets and soft pillows, a cool breeze flowing from the air-conditioner. I catch a scent of lavender in the air as my head connects with the pillow. Life is good in this fantasy.
Having a daughter with complex medical issues has taught me a lot. It has taught me what really matters in life, and to appreciate what I have.
I am thankful for good days and what little sleep I do get. I have learned to celebrate all the little victories in life as well. I feel like a princess when I do get to sleep a little extra or when the chores are done around the house.
To be honest, I am exhausted and would love to sleep. If I am missing sleep to spend time with my daughter though, it’s totally worth it. Every second I get to spend with her is a gift and even in my sleep-deprived state, I am thankful for this time.
The Family Support section of this website offers information on a wide range of supports and self-care.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.