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Mixed Feelings

My little guy swiped the tears off of his face with the back of his arm and grinned as an excited squeal squeaked out. He had just suffered through painful Botox injections in his legs, but was quickly distracted by the huge bin of toys and games that was plopped in front of him to choose from.

I couldn’t help but crack a smile as well, and thought, there it is, reminding me again; grief and joy coexist.

I have felt bound by a very long season of grieving; one fresh struggle after another for a seemingly endless stretch of time. As I told a good friend the other day; it’s just a constant game of Russian roulette and we keep getting the bullet. I’m sure that’s not the case even though it feels that way sometimes. I have also seen that life does not pause to wait for the hard thing to be over; it scatters the joy right in with it. And thank goodness… am I right? I shudder to think what these dark days would feel like without the fresh breaths of laughter and excitement. Admittedly, I also struggle to fully appreciate the joys sometimes when I am grieving hard.

These past few weeks have been a more prominent example than most of this roller coaster of sorts. I sat across the table to sign for the closing of our beautiful new house crouched over from the fresh surgical scars of a few days prior, celebrated the excitement of boxes and furniture coming in the door while resenting the limitations that kept me from helping to carry and unpack. My flowers bloomed beautifully while my vegetable garden was laid to waste by the weather. Summer break and the delight in bikes and popsicles and lightening bugs and new friends, was coupled with a traumatic fall from a tree that landed my oldest girl unconscious and in an ambulance. On the same hand, the devastation and helplessness I felt over her injuries was bathed in the gratitude that it was not as disastrous as it easily could have been. I received insurance approval for a wonderful new device to help me walk more normally on the tails of hearing hard news from a close friend, and had a weekend of celebrating my newly sixteen year old boy and Father’s Day, coupled with anxiety and new testing for another unknown of my own. There is no time to stop and celebrate the victories or grieve the losses, there is simply a perpetual circulation of the highest highs and the lowest lows, and the best I have found is to drink deeply of the holy graces and allow yourself to feel the depths of the sorrows, and keep moving forward with them.

I know I’m not alone in this. I realize each of you dear readers face your own highs and lows with the revolutions around the sun, and I hope it gives us so much more kindness and understanding for each other. I haven’t mastered this, no; it’s easy to let the sting of the hard bleed into the moments that should be celebrated, but I’m trying ever so hard to fully embrace both, are you?

Please leave me a comment, it lets me know you’re listening!

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What’s Making Me Tick

I carry with me “get out of jail free” cards for whenever I am somewhere a metal detector is involved. Rumor has it if you listen closely enough, I actually tick. I digress… One of my cards is for the medication pump that delivers meds into my spinal fluid, one for the metal coils that are part of my G/J tube in my abdomen, my port usually gets “bomb-sniffed” just because it shows up even though it isn’t metal, and this week I added a new card to my stack. I have the opportunity to try out the Walk-Aide; a device strapped around my upper calf that allows me to lift the toes on my left foot without the use of the brace I have worn for the past 5 years. Intriguing and exciting to say the least, and I have a feeling it will be worth being one more part bionic.

I have been switched back and forth between several different kinds of AFO’s (ankle-foot orthoses) over the past several years, depending on the changing severity of my weakness and muscle spasticity. They have all had the same goal though; to provide lift to my toes and ball of my foot, which isn’t getting the message down the nerve from my brain. Without help I cannot completely clear my foot when I’m walking, which leads to lots of awkward tripping and stumbling. I managed to keep up for awhile, even finding a way to get a foot-drop brace crammed into my duty boots, but it hasn’t always been the most comfortable.

Enter this fancy new device called the Walk-Aide. After some playing around with where the electrodes need to be, my orthotist located the exact spot that the nerve is in my leg to tell my foot to lift. She then worked through trial and error to find just the right timing and intensity to provide electrical stimulation to the nerve enough to lift my foot for me every time I step. The shock is pretty intense and often surprises me, especially when I get up from sitting for awhile, but it’s a pretty incredible feeling to be able to walk around barefoot, in my favorite shoes, or *gasp* in sandals without a bulky brace. I have been buying bigger shoes and work boots in order to accommodate my braces the last several years, and have had to completely avoid things like well, pretty much all pretty shoes and things like flip flops and sandals. Needless to say, I’m pretty stoked at the idea of being to wear whatever shoes (or no shoes!) I want, and still be able to walk in a more normal gait pattern.

They are letting me trial it for a little over a month, so I’m hoping that will give me time to adjust to the discomfort of the stim, start waking up some of the muscles I haven’t used in awhile, and give my hip and thigh a break from doing all the week. The deepest hope is that my health insurance will acknowledge the benefit and agree to help with the cost. If not, and I still decide it’s worth working for, my big girl and I have decided to do some art and projects and stuff to sell to earn the money needed to buy the device for me without the help of insurance.

Today, my leg is absolutelyfreakingexhausted from walking around with it for various chunks of time. I’m committed to seeing it through though, and excited for the potential change that will make one more thing easier and more functional for me. Stay tuned!

endurance

That Thing You Do

Self care for me typically looks like getting myself to physical therapy every week, a sterile dressing change for my port every Monday, and making sure I keep up with the never-ending turntable of doctor appointments, medicines, infusions, and feedings. I read something recently that was a bit of new information about what self care really means, and it sounded kind of nice.

Last week I took an hour to sit in a cute little studio and get my hair done. For the first time in like… I don’t know. I actually bought a Groupon for it months ago, and it took all that time and one panic-stricken cancellation to get the nerve to show up. My sparkly eyed 5 year old sat in one of the washing chairs near me and gave me a reassuring thumbs-up every time I glanced his way. I braved a little bit of small talk with my stylist, and ended up with a cell phone number scrawled on a bit of paper, which after living here nearly a year and not having any friends to call my own yet, was kind of a big deal. Well, not that we’ll be friends, but we had something crazy in common, and now I have a person who has traveled before me and has understanding and experience to share with me when I need it.

I was mildly shocked and thoroughly pleased with the transformation a little TLC gave my hair that day, and realizing I would probably never be able to replicate the skill with which she had styled my hair that morning, I snapped a picture when I got to the car, before the unruly wind made an abstract art project of it. I shot the photo out to a few of my closest people, and every single response I got started with “holy!” Some of them were more repeatable than others. It felt good to feel pretty and girly and pampered, and before bed that night I took the time to paint some Spring color on my bare nails. Less than two hours of my week spent just on me had given me a splash of confidence and a smile of satisfaction, and I decided I liked it.

By the time the weekend rolled around I was weary and sore from our usual busy days of appointments and routines, and I decided that self-care, as lovely as it felt, is something that has to be purposely allotted for, or it’s not going to be a usual occurrence. I decided I would push back all of the work for moving and organizing and cleaning that never seems to end, and I would intentionally make my Sunday a time to get some things done for myself that *I* wanted to do. I remembered the refreshment of getting to take care of myself several days earlier, and I knew it would be equally rejuvenating to spend some time doing projects that brought more enjoyment and satisfaction than packing boxes or wiping down the bathrooms. I intentionally didn’t walk into the rooms I knew would scream for my attention, and I informed my man that the only three things that would top my to-do list that day would be to finish a scrapbook someone had asked me to do um…years ago, to finally put together the long overdo baby book for our youngest baby who is now far from infancy, and to begin twisting together the giant chunky balls of sorbet-colored yarn that have been patiently waiting to be woven into a blanket. I put on a funny and lighthearted podcast, cleared my craft table, scattered about all my scrapbooking supplies, and set about spending the day being productive in a most satisfying way. I mean, there’s nothing like the feeling of finishing something you’ve been working on for years, right??

I figured a list of three things was pretty attainable, and with my current energy level I got through only the first thing. Six years ago I was asked to make this scrapbook (how embarrassing), and Sunday I finally had it finished and ready to mail before I collapsed into bed. This was after a downpour of frustrated tears. Three things. I only had three things on my list and I felt exasperated and defeated that I only /barely/ made it through one. My husband doesn’t know how to be negative about anything, and he was quick to praise what I had accomplished and encourage me to keep trying. He’s right, it was a start, and even though it was just one thing, I did it, and one check mark is more than I had last week.

Knowing the affirmation and the joy that these small things brought me this week, it’s my intention to continue purposely making time on a regular basis to do things that are just for me, even if they aren’t on the perpetual merry go round of important things that need to be done. Some day I hope that includes coloring, binge-watching, and reading for fun, but for now it’s a good step to be knocking out some things that I enjoy doing that aren’t on the daily grind list. In the next few months when I go through a small string of surgeries, there will be plenty of forced sitting around.

I’d love to hear what your self-care looks like! What do you indulge in? Is it scheduled or do you do it whenever you can squeeze it in? Does it help you balance all the other areas of your life, or do you feel guilty taking time just for yourself? I haven’t quite decided yet…but I have lots more to practice!