Every week I spend several hours at my computer and on the phone helping parents navigate the world of epilepsy, its ups and downs, its medications, their side effects, their withdrawals, its alternative therapies, namely medicinal cannabis oils. When I sat down at my desk this morning, I read a question a mother had posted on a Facebook group page called CBD 4 Children With Epilepsy. She wrote:
As care givers, how do you keep balance in your life to be your best?
I knew what she meant. Before responding, I scrolled through each of the comments that mostly mothers had written, clutching my fist to my heart as I read:
I wish I knew.
I honestly don't know.
I feel lost.
I don’t know how yet.
Trying to figure that out.
There's no balance.
Take it one day at a time. There is no balance or normalcy anymore.
Balance??? the only thing I attempt to balance is the wine glass in the cup holder on the elliptical.
Fake it til you make it!
Yoga. Lots of yoga.
No balance. You do your best. Those in your life who get it will become priceless and those who don’t will eventually drop off. Any suggestions are easier said then done. Do what works for you in the moment.
This is a really good post. Just reading that I’m not alone makes me feel less like crap.
be grateful for all the good that is in life. Again I thinks it’s healthy to cry every once in a while, you have to let it out.
Sadly, there is no balance. You just scrape by each day at a time. Hang in there.
I’d die for some relief on the regular because I do feel all consumed by it. Depression and anxiety get so much worse over time. Not myself anymore. But day by day we roll along.
No balance here...
each day is hour. By hour. I find when I get a chance to leave the house I worry. Or if I’m here I worry but at least I’m here to help. I don’t know how I will do this long term but for now I take CBD and drink coffee.
one father replied:
There is no balance—I take every minute as it comes. Prepare for the worst and hope for the best. Every time I feel like giving up she smiles at me and it makes every minute of pain worth it. Best advice I can give you—ignore doctors, ignore people’s opinions and follow your gut—the day I turned my back on doctors, family and so-called friends was the day my daughter started to get better. Cannabis is helping her (and me!) along nicely.
Having felt much despair recently from—among other things—sleep deprivation, no nursing help for months, the early-onset of winter and feeling hemmed in, too many seizures and missed days of school this fall, the cumulative stress of being the primary caregiver of a child like calvin, I responded to the post with the best advice I could give at the time:
simplify. spend time with friends. read a good book. delight in the small things. spend time in nature. one day at a time. practice the art of mindfulness. forgive yourself.
Later, as I walked Nellie through the slushy trails, I pondered the mother's question further. How do I do it? I thought to myself. How do I take care of an infant-toddler in a growing teenage body, year after year after year? How do I go on chopping his food, clipping his nails, washing his hair, wiping his ass, changing his diapers, his shirt, his pants, his socks, his bandanas, his bibs, his shoes? How do I go on researching new drugs, their efficacy, their side effects, their metabolization, their half-life, their therapeutic range, their withdrawal protocol? How do I go on researching cannabis and all of its cannabinoids, terpenes, extraction methods, effective therapeutic ranges? How do I go on logging Calvin's daily behaviors in my journal, logging the frequency, size and consistency of his stool, his sleep patterns, his drug changes, his seizures, their frequency, type and duration? How do I go on watching him seize? How do I go on keeping track of his doctor's appointments and blood draws, hire his nurses, train them, manage them, then see them go?
The burden of raising a child like mine is dizzying if looked at under a microscope or from afar, though both are necessary evils. The safest, healthiest distance to keep to achieve any semblance of balance in life—though not always practical or possible—is a day, an hour, a moment.
After I walked Nellie and had done some errands I went to the college's indoor track and ran two-plus miles. It's the second time this week—and one of only a handful of times in the past couple of years—that I have jogged. It felt good. I saw a couple of friends making their way around the red, rubberized track. When I finished my warm-down lap, a handsome, fit, slightly-older man came over to visit, and when I told him I was just trying to get some much-needed cardio, he asked me what other aerobic exercise I do. I told him I don't do any besides walk the dog, lift my disabled son and shadow him around the house. The man seemed impressed, but maybe I'm imagining things.
Walking home in the cold, endorphins coursing through my soon-to-be-fit body, and feeling a slight glow from being noticed, I thought of a few things to add to my list of advice for the parents of kids with epilepsy looking for balance:
exercise. nap. cuss. get out of the house, day and/or night. talk to strangers. know you're not alone. be grateful.
As care givers, how do you keep balance in your life to be your best?
I knew what she meant. Before responding, I scrolled through each of the comments that mostly mothers had written, clutching my fist to my heart as I read:
I wish I knew.
I honestly don't know.
I feel lost.
I don’t know how yet.
Trying to figure that out.
There's no balance.
Take it one day at a time. There is no balance or normalcy anymore.
Balance??? the only thing I attempt to balance is the wine glass in the cup holder on the elliptical.
Fake it til you make it!
Yoga. Lots of yoga.
No balance. You do your best. Those in your life who get it will become priceless and those who don’t will eventually drop off. Any suggestions are easier said then done. Do what works for you in the moment.
This is a really good post. Just reading that I’m not alone makes me feel less like crap.
be grateful for all the good that is in life. Again I thinks it’s healthy to cry every once in a while, you have to let it out.
Sadly, there is no balance. You just scrape by each day at a time. Hang in there.
I’d die for some relief on the regular because I do feel all consumed by it. Depression and anxiety get so much worse over time. Not myself anymore. But day by day we roll along.
No balance here...
each day is hour. By hour. I find when I get a chance to leave the house I worry. Or if I’m here I worry but at least I’m here to help. I don’t know how I will do this long term but for now I take CBD and drink coffee.
one father replied:
There is no balance—I take every minute as it comes. Prepare for the worst and hope for the best. Every time I feel like giving up she smiles at me and it makes every minute of pain worth it. Best advice I can give you—ignore doctors, ignore people’s opinions and follow your gut—the day I turned my back on doctors, family and so-called friends was the day my daughter started to get better. Cannabis is helping her (and me!) along nicely.
Having felt much despair recently from—among other things—sleep deprivation, no nursing help for months, the early-onset of winter and feeling hemmed in, too many seizures and missed days of school this fall, the cumulative stress of being the primary caregiver of a child like calvin, I responded to the post with the best advice I could give at the time:
simplify. spend time with friends. read a good book. delight in the small things. spend time in nature. one day at a time. practice the art of mindfulness. forgive yourself.
Later, as I walked Nellie through the slushy trails, I pondered the mother's question further. How do I do it? I thought to myself. How do I take care of an infant-toddler in a growing teenage body, year after year after year? How do I go on chopping his food, clipping his nails, washing his hair, wiping his ass, changing his diapers, his shirt, his pants, his socks, his bandanas, his bibs, his shoes? How do I go on researching new drugs, their efficacy, their side effects, their metabolization, their half-life, their therapeutic range, their withdrawal protocol? How do I go on researching cannabis and all of its cannabinoids, terpenes, extraction methods, effective therapeutic ranges? How do I go on logging Calvin's daily behaviors in my journal, logging the frequency, size and consistency of his stool, his sleep patterns, his drug changes, his seizures, their frequency, type and duration? How do I go on watching him seize? How do I go on keeping track of his doctor's appointments and blood draws, hire his nurses, train them, manage them, then see them go?
The burden of raising a child like mine is dizzying if looked at under a microscope or from afar, though both are necessary evils. The safest, healthiest distance to keep to achieve any semblance of balance in life—though not always practical or possible—is a day, an hour, a moment.
After I walked Nellie and had done some errands I went to the college's indoor track and ran two-plus miles. It's the second time this week—and one of only a handful of times in the past couple of years—that I have jogged. It felt good. I saw a couple of friends making their way around the red, rubberized track. When I finished my warm-down lap, a handsome, fit, slightly-older man came over to visit, and when I told him I was just trying to get some much-needed cardio, he asked me what other aerobic exercise I do. I told him I don't do any besides walk the dog, lift my disabled son and shadow him around the house. The man seemed impressed, but maybe I'm imagining things.
Walking home in the cold, endorphins coursing through my soon-to-be-fit body, and feeling a slight glow from being noticed, I thought of a few things to add to my list of advice for the parents of kids with epilepsy looking for balance:
exercise. nap. cuss. get out of the house, day and/or night. talk to strangers. know you're not alone. be grateful.
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| Photo by Michael Kolster |
I love this post. I hear every single mothers feeling. They too are mine.
ReplyDelete-no balance, how have I done this for so long, what will happen to her when I’m gone
And Miles to go
Before I sleep