My wonderful, week long visit with our nephew, Max, is coming to its end, as are the warm summer nights, picnics, boat rides, barbecues and the luxuriousness of late evening twilight skies where bats flit and dive in loops above our heads. Soon, the crickets’ orchestra will fade to a single chirp, then simply dissolve into the buzz of nearby traffic and the happy babble of students. Spotted brown spiders pepper themselves between dewy shrubs waiting for their prey and, one by one, the leaves are beginning to yellow.
It has been a decent summer, considering the painful act of weaning our son from a protracted benzodiazepine seizure therapy. We are seeing our former, calmer, boy slowly emerge from the drug’s veil of dizzy mania as we nudge its way down the syringe by degrees.
This morning, gazing out the kitchen windows at the backyard garden and to the field beyond I see the college students—our new neighbors—walking and riding bikes along a nicely curved asphalt path that had been laid down this summer. The path leads from the former retirement home, now a newly renovated thirty-bed dormitory, toward the main campus. It meanders past the old, white one-room school house—a stone’s throw from our back yard—aside a large, neatly kept bed of basil, beets and lettuces edged with a ruff of yellow and magenta zinnias. Seeing the students and having heard them gleefully partying on Friday night, I feel a twinge in my heart knowing Calvin will never be amongst them.
I sit drinking my coffee wondering if I’ll be taking care of Calvin for the rest of my life or if he’ll be able to live in some sort of group home or if he'll survive past childhood. At this point, it’s almost certain he will never be potty trained and I wonder what kind of person is up to changing adult diapers. I fear he’ll continue having seizures and doubt anyone would be as hypervigilant about their treatment and control as I. I consider how loving Calvin is and how much easier it’s becoming to love him back in the midst of his renewed calm. Now, he sits on my lap for several minutes, hugs us for long periods of time without pulling our hair, seeks us out to embrace. Who will do that with a grown Calvin when we are gone? He won’t always be a cute little kid. He’ll likely become a grown man with a big voice and lots of hair, but inside he’ll still be like a child. Who will love him and hug him and kiss him then?
As I write this I see a greeting card recently sent to me and Calvin from a woman who read my piece in The Sun magazine. The kind words she wrote about my writing and mothering made me teary. Then she said:
We made a donation in your name to your CURE page. I hope it goes towards researching ways to help you be seizure-free and at peace and happy.
Rereading the card reminded me that Calvin’s happiness and peace in this life are really the only things that matter. It doesn’t matter that he can’t read or write or throw a ball or ride a bike or swim. It doesn’t matter that he won’t go to college, play ultimate frisbee and party down with the co-eds. What matters is he can enjoy a summer day and the sweet cold of an ice cream cone. What matters is he can walk hand in hand with his dad while delighting in the sounds and smells and the crazy chaos of a summer fair, of children squealing on the midway rides, of bleating sheep, barking dogs and mooing cows. What matters is he can revel in the hugs and kisses of his family, then, after a long, luxurious bath, he can curl up and fall asleep in the fading light of the last days of summer, a cool evening breeze drifting across his tired legs, soothed by the chirp of crickets though not knowing at all what they are.
It has been a decent summer, considering the painful act of weaning our son from a protracted benzodiazepine seizure therapy. We are seeing our former, calmer, boy slowly emerge from the drug’s veil of dizzy mania as we nudge its way down the syringe by degrees.
This morning, gazing out the kitchen windows at the backyard garden and to the field beyond I see the college students—our new neighbors—walking and riding bikes along a nicely curved asphalt path that had been laid down this summer. The path leads from the former retirement home, now a newly renovated thirty-bed dormitory, toward the main campus. It meanders past the old, white one-room school house—a stone’s throw from our back yard—aside a large, neatly kept bed of basil, beets and lettuces edged with a ruff of yellow and magenta zinnias. Seeing the students and having heard them gleefully partying on Friday night, I feel a twinge in my heart knowing Calvin will never be amongst them.
I sit drinking my coffee wondering if I’ll be taking care of Calvin for the rest of my life or if he’ll be able to live in some sort of group home or if he'll survive past childhood. At this point, it’s almost certain he will never be potty trained and I wonder what kind of person is up to changing adult diapers. I fear he’ll continue having seizures and doubt anyone would be as hypervigilant about their treatment and control as I. I consider how loving Calvin is and how much easier it’s becoming to love him back in the midst of his renewed calm. Now, he sits on my lap for several minutes, hugs us for long periods of time without pulling our hair, seeks us out to embrace. Who will do that with a grown Calvin when we are gone? He won’t always be a cute little kid. He’ll likely become a grown man with a big voice and lots of hair, but inside he’ll still be like a child. Who will love him and hug him and kiss him then?
As I write this I see a greeting card recently sent to me and Calvin from a woman who read my piece in The Sun magazine. The kind words she wrote about my writing and mothering made me teary. Then she said:
We made a donation in your name to your CURE page. I hope it goes towards researching ways to help you be seizure-free and at peace and happy.
Rereading the card reminded me that Calvin’s happiness and peace in this life are really the only things that matter. It doesn’t matter that he can’t read or write or throw a ball or ride a bike or swim. It doesn’t matter that he won’t go to college, play ultimate frisbee and party down with the co-eds. What matters is he can enjoy a summer day and the sweet cold of an ice cream cone. What matters is he can walk hand in hand with his dad while delighting in the sounds and smells and the crazy chaos of a summer fair, of children squealing on the midway rides, of bleating sheep, barking dogs and mooing cows. What matters is he can revel in the hugs and kisses of his family, then, after a long, luxurious bath, he can curl up and fall asleep in the fading light of the last days of summer, a cool evening breeze drifting across his tired legs, soothed by the chirp of crickets though not knowing at all what they are.
Do look at what young adults who are like Calving are doing, where they are living, who is caring for them when their parents are not. There are many blogs written by caretakers about children who need extra care,. None I can find about those adults who do leave their families, still need full care and are getting it elsewhere. What are the alternatives? Surely this is not the first generation facing this issue and there have to be older versions of Calvin before they become the age to go into nursing homes and merge with many other elderly who end up needing more care than family can give or get in their own homes.
ReplyDeleteYour pain and worry are clear, totally reasonable and make me very sad. Cath Young, above, makes a very good point.
ReplyDeleteon another note, your description of the end of summer is vivid, like the photo at the end...thank you!
Oh Christy, I know exactly how you feel. My husband just turned 60 and I am 55 and I feel that our time here on earth is running out quickly. No one will love my Bethany Like I do. No one will put up with her the way I do either. Even though she has 8 siblings to share the load of caring for her, I still worry about what will become of her. She will need 24 hour care For ever just like sweet Calvin. All inwant for her is to be loved and happy. I'm glad to see that Calvin is calmer and happier. I'm sure that's a comfort to you.
ReplyDelete