Family

Virgin Couches

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Freewill reigns, restrictions are my sworn enemy. Dormancy is not an option in our perpetual motion universe of parenting three kids (one special needs), homeschooling, lobbying a federal CBD bill in D.C., starting two family corporations, writing a book, and the ever-important adventuring. But life comes at you fast and hard, read:  ground, ground comes at you fast and hard. I took a short, violent fall bouldering a few months back, heard the ankle "POP!" when I landed. But being the stubborn girl I am, I kept on climbing and increasing my trail running miles for months, meanwhile icing, compressing and elevating, stuffing my tender, busted leg into my various, performance-fit-tight, so tight my toenails are never permanently attached, athletic footwear. Gregjohn, the Hot Husband, silently watched my internal belligerency with great restraint, but logic and concern finally erupted and he made me an appointment with an orthopedic ankle specialist. He had to physically drive to the office to chat without me present, knowing my general mistrust of medical intervention.

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The verdict was in, I needed an ankle reconstruction surgery. No. Nope. Not possible. I had plans! Later that week I had an AMGA climbing guide certification course, followed a few days later by my off-road ADV motorcycle clinic, followed days later by an outdoor lead climbing class for the members of my new women's climbing company, belayHer. No time, NO TIME for this malarkey. Did I mention our special needs daughter currently has a broken leg?

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My first trip to the doctor beyond birthing babies had me eavesdropping on The Waiting Room People's conversations. It was an unending stream of broken orthopedic clients filing in and out of the doctor's office at my various appointments and scans, boasting about their injuries, the one-upmanship, the surgical scar pride. It always peaked my curiosity, the satisfaction and attention-seeking of people with medical complications. This is an actual sport in the state of Florida where my parents live but they don't hand out trophies for Worst Chronic Injury. You buy your own, a headstone. In Colorado, it is more of a stupidity boast, what you got away with while playing in the mountains. Me? I was indoors at a rock climbing gym, landed on mats. Can I award myself a last place award?

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It is said we all seek and must receive attention, it is human nature and necessary. Once you pinpoint your method, and others', you have such greater insight into motivations of actions. What is your attention-seeking route? I name them, none better or worse than another, they just are what they are. Are you; the Capable, the Mother Theresa, the Martyr, the Munchausen, the Joker, the Wallflower, the Narcissist, the Cheerleader, the Dramaqueen, the Addict, the Asshole? I believe when you don't fill your cup, the universe intervenes on your part, forcing you to focus on the deficit or die of dehydration. It isn't selfish, it is necessary, to take care of yourself first. If you want to be a productive human, able to give, you can't start empty. Duh. I think for me it has become scarily hard to recognize when I'm tapped out. I had gotten too proficient at functioning and contributing with very little going toward myself. I became proud I needed so little; sleep, alone time, money, sex, hell just food and water weren't always adequate. You can only do that for so long and then WHAM life slows you the fuck down and breaks you so you have to focus and love and attend to yourself. Perhaps my method is Capable, I get attention by being able-bodied. You can take anything too far. Got it. Noted.

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I wonder about the potential outcome of increased caution post-injury. Will I exert excess prudence on the rock, trails, snow and ice? Will I have more fear now when I'm out there adventuring? Gregjohn says in his case it went the opposite and he is even more daring, takes more chances since healing from his various traumas (he has had four recent firefighter injuries and surgeries.) Maybe having gone through more than a few of these now, he's learned he is fixable, and it ain't nothin' but a thang. Joy should not be repressed when joy means a full cup. If joy is barreling down steep single-track balls out, then barrel he shall.

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So here I lay, post-op, getting waited on by my supportive husband, kids, friends, family. It is an incredibly humbling experience, your first real injury. It is difficult asking for help and having people see you weak, stoned on drugs, vomiting from the pain, useless, needy. Turns out I am not invincible, I am just another soft-bodied human in a sharp world, likely having scraped by a gauntlet of near misses until one finally called my number. They opened up my ankle, reattached some ligaments and tendons, tooled bone. Six weeks I cannot put weight on my right leg. This is a big shit sandwich for a person who doesn't sit still for six minutes. We are outdoors people, we are middle-aged athletes, GD it! Meaning we can finally afford gear. The only gear in my near future is somewhere comfortable to sit. Excepting all the sex our couches are forced to endure, they are virgin furnishings in the "chill out" sense. My sexual sofa has become a sectional sofa.

Slow Days with Charlotte

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Many of our friends and followers on other social media regularly tell us how they live vicariously through us, as we try to be fairly active. Many of our posts are getting outside and being active but there is another side to our life that people do not see. One of the children suffers from Dravet syndrome with developmental and physical issues related to this crippling form of epilepsy. One of our goals with this blog was to show others with special needs children that you can get outside and continue to live life.

 

Getting outside is just as important to Charlotte as it is to us. She craves sensory stimulation and will look up in wonder as planes fly past, snow flakes fall from the sky or stopping on a hike to touch the bark of a tree. We all try to get out together and will carry her to the crags, bicycle rides or just being out to dinner and being a normal family.

Max and Chase recently traveled to Mexico and returned feeling a bit sick. We are not sure if Charlotte was affected by what the kids brought back, the full moon or her changing body. Talk to any special needs family and they can tell you how these factors affect the disease their children suffer from. Our weather was also changing and extreme changes in weather can also set Charlotte back for a few days. Unfortunately this downturn in Charlotte lasted almost a week.

This is longest time she has decompensated for. Usually she will have a occasional seizure at bedtime as she falls asleep but throughout this week there were several seizures during the day and throughout the night. Days were spent holding her on the couch or anywhere we could to keep her comfortable and feeling loved.  The other issue is that she will barely eat or drink during these moments.  These are the days when you feel utterly hopeless. Seeing a defenseless child seizing and turning blue, while all you can do is hold her and hope this isn’t the status seizure that will end her life.  She is 10 and will be experiencing puberty soon.  Changes in health and hormones stress Dravet kids and these stresses on their bodies may send them into the status seizure that ends their life.

Shortly after the nap on the hammock she popped awake and started talking in her happy sing song way “mommy, poppy, baaaabbbbiieee”. This is life with Charlotte, one moment you are drawn into her big blue eyes and love and the for some inexplicable reason you are wringing your hands trying to figure out what is making her worse.  Somedays our goal is outside and other days our goal is inside and ensuring Charlotte is taken care of.  Either way this is our life together. Some days are fun, some hard but they are all rewarding!