Like our earth on its axis, we are meant to rotate through the many seasons of life. On our journey from birth to death, our minds and spirits change as we grow in body and experience. My 16 year old daughter and I were recently looking ahead to the year after next, when she completes high school. We talked about her plans and hopes and spoke of the practicalities of learning how to live and function independently in this great big world. I experienced anxiety as I imagined my daughter, who once had to hold my hand while we crossed the street, now walking the streets of a big city on her own.
The other day I watched a mother struggle with her toddler son at the grocery store; her fatigue and exasperation evident as she tried to console and bargain with him so that he would stay seated in the grocery cart. I remember thinking: She won’t have to do that forever. I imagined them years down the road, coming to the grocery store together and talking about what they would make for dinner, a young boy fully capable and independent. He would’t need to be seated in the cart any longer.
When I hear or see new moms exhausted from sleepless nights, diaper changes, feedings, and taking care of a being who is completely dependent, it reminds me of when I was a new mom to my daughter. It is exhausting! It feels like it will never end, but all of a sudden your child is potty trained, and all of a sudden they can clean up after themselves in the bathroom and change and dress on their own. They can start feeding themselves and walking on their own in public places. The baby grows and changes, the natural seasons of life transpire and responsibilities ease.
I’ve had a group of adults with differing abilities come to the library regularly for a social literacy time. These are men and women, in their 20’s and 30’s who spend their days with caregivers in a day program. In the evenings and on weekends they live at home with their parents or foster parents. We spend our time learning how to write each other’s names, how to read simple sentences, how to complete fill in the blanks. We talk about animals, about airplanes, friendships and outer space. The topics and tasks we do are very likely the same as they did 10, 15, 20 years ago. They have not experienced the natural cycle of seasonal change in their lives. They have not experienced romance, post-secondary education, marriage and children, professional careers.
I take Cody to the playground and I watch him, a big 13 year old boy, sitting at the top of the slide sometimes scared to go down. I remember doing this with him 10 years ago, 7 years ago, 4 years ago. I hear Cody up sometimes at 3am, upset about something…or still wide awake at 12 midnight. I remember the stress of these sleepless nights when he was a baby, I remember it 8 years ago, I remember it 3 years ago. I help him clean up after himself in the bathroom and I remember doing the same thing when he was 3, when he was 7, when he was 11. I help him eat a food which is tricky to use a spoon with and I remember doing the same thing when he first started eating solids, and each year after that. I try and calm Cody during a meltdown. I remember doing this when he was 2 years old, when he was 5 years old, when he was 12 years old.
I remember doing these things and I realize I will be doing them for many, many more years. I realize that though the rest of the world grows and changes, much of what Cody is will not. I think one of the aspects of living with certain disabilities that is the most difficult to accept is this: There is no natural cycle of growth and change. Things stay the same. When everything in your being yearns to see change and growth, you realize that in many ways you are stuck in time. It goes against every natural inclination, every natural force within. And when things don’t change, fatigue can weigh heavy, despair can creep in.
I imagine what it is like for Cody. He is 13. He has already experienced puberty. His body has shot up and outwards in all the ways it should for an adolescent boy. He has urges and hormones. He experiences his increased strength and that his peers are changing too. All the while, his mind for the most part stays the same. His abilities to speak, if anything, have decreased. If it is difficult for me as his mom, I try and imagine what it is like for him. How does it feel to experience the passing of time in your body and in your world without being able to move with it?
My intention is to help Cody grow and learn, it always will be. But I have to accept that much will always stay the same.