Uncategorized

Million Miles in September

I logged onto Facebook today and read the story of a local child who died of cancer.   If there is something more horrendous than the death of a child, I don’t know what it is.  I have noticed this million mile challenge for childhood cancer research funding, and I have to do it.   I know too many children who have been taken by childhood cancer, and too many adults who still suffer from the effects of treatment. We have to do better.   We have to.

https://www.alexslemonade.org/mypage/1253493

special needs parenting

Foreboding Joy

In my pursuit of personal development it recently became apparent to me that I resist vulnerability.  Since I am pursuing development, when I recognize a shortcoming my goal is to dive in and do my best to improve it. For this particular shortcoming, I decided to read “Daring Greatly”‘ by Brené Brown.  While I feel that this particular book is not a bullseye for me, the wisdom nuggets are plentiful enough that it was entirely worthwhile to read it anyway.  

Chapter 4 is where, for me, things got interesting.  Brené addresses ways that we stifle vulnerability, and one of them she calls “foreboding joy”; and what she means by that is that we dampen our own joyful experience by reminding ourselves of what could go wrong.  So, say, you have a vacation planned, and you spend so much time fussing over possible travel concerns or mishaps that you never let your guard down enough to really experience the joy and relaxation that is the very purpose of the vacation.  

This is where I’m stuck.

I’m leaving for a little mini-vacay with my older two kids on Monday, a long overdue visit to Virginia to see my sister.   Ben will be in school, and Mike will mind the home front with him during our excursion.  It’s all set, so now my only course of action is to let go of what ifs and enjoy.

But that’s not how things work when you have a medically complex child.

Two separate times our vacations have been interrupted by Ben’s  health crises, one was leukemia, the other was c diff.  At present, it appears that Ben has grown into another Cyclical Vomiting phase, and could have an episode at any moment, and if that happens he could very easily need an ER visit or hospital stay.  So where does that leave us?

I do believe that leaves us right in forboding joy territory. 

It’s practical and necessary to consider the likelihood of a health crisis during our brief jaunt, and have a contingency plan in place.  So for me, being a responsible parent means a certain degree of foreboding joy is necessary.  If I decide to spend a day in the mountains, it’s imparative that I ensure good cell coverage as I am the one with the unwritten (and possibly unwritable) algorithm of all things Ben in my head.  I am the one who knows which doctor to call for what and what med combinations to try for each scenario.  

In other words, parenting a complex child means living with a certain amount of foreboding joy at any given time, and that the foreboding exists on a sliding scale of how far away we go and how long we plan to be away. 

I hope that someday this is no longer the case.  I hope to be free to discard foreboding joy with complete abandon and live in each moment without fussing over the whatifs, but not now.  For now our reality is that the what ifs must be embraced and accounted for if we hope to enjoy simple pleasures like a road trip to visit family.  

And that’s just going to have to be okay.

running · special needs parenting · Uncategorized

Off to the races 

We were watching BattleFrog Races on TV this weekend, and Alex exclaimed that he wanted to do a race like that.  That’s a lofty goal, to be sure, but I took him seriously, actually, I might have swooned a bit, but I took his comment to heart. I don’t know if he will actually get to do a BattleFrog race, but consider the goal set, and we’re working toward it, and fully intend to find a fun race and participate with him.

We normally exercise daily, I do my own workout and take Alex for a bike ride, a walk, or out to play frisbee or football, but today we kicked it up a notch and I made him run.  He didn’t like it.

It would be so easy to acquiese.  He has low muscle tone after all, and loose joints, and running is hard for him.  But that’s the point.  It’s hard.  He wants to do an obstacle race, which will be hard, so he has to train, which is hard.

I made him run, he didn’t like it. I let him walk, he still complained. Then I realized that every runner has to start somewhere, and that usually means intervals of walking.

We walk/ran about 5/6 of the distance and I challenged him to a race home. He stuck his fingers in his ears, taunting me, and took off. He beat me home. I couldn’t have been more pleased.


After Alex beat me home. 

It seems that one of my biggest challenges as a special needs parent is discerning if my kids are just being normal kids; trying to perceive if the limitations I sense are legitimate or not. So often I find that things I could allow to be barriers for him are simply him trying to get away with less effort than I want from him.  If he beat me home, it means he was entirely capable of everything I asked of him. 

An entirely normal behavior for any child.

I so often see parents of kids with disabilities working so hard with their young children in early intervention and preschool, just to allow those same children right off the hook as they get older and set in their ways. I, too, have been susceptible to that same tendency, when therapy is done mostly at school and kids get older, I have neglected pushing toward new milestones. Yet as Alex grows up, I am daily more aware of his need for independence, and in order for him to be as independent as possible, he needs to have life experiences. If I let him stay inside his comfort zone, without challenging him to dream big and work hard I am standing in the way of his autonomy and limiting him.

And it’s really hard not to do that.

So we ran, and we’ll run again and again, because independence matters, and this one step in that direction matters.

writing

Self-Stinginess

When I get something I really treasure I stash it away, saving it for the perfect moment.  Usually it’s little things like special soaps I get as gifts, chocolates, you know, small treasures.

I’ve long realized how often I waste things this way.  The chocolate covered espresso beans I’ve stashed in my purse for just the right moment have melted into a lump.  The soaps I save for special occasions have eroded in the shower.  My family finds my treats thinking they’re being ignored and help themselves, and when I go for one, the numbers are decimated.  That perfect lipstick color is the one I never use for fear of it running out.


(Exhibit A, ruined chocolate covered espresso beans)

I’m trying really hard to learn to savor special things while they’re still special instead of losing them to stinginess.  It’s a counterproductive cycle that I struggle to break.  I’m so reluctant to finish that often I never start.   Why do I hold such a tight grip on perishable things that I ruin them?  Where did this maladaptive behavior start and why does it carry on?  Why do I think that an everyday moment is inadequate to indulge in the finer things and still deny myself even during the peaks and valleys for which I save them?  Giving and receiving gifts is not a strength of mine.  When someone gives me a perfect gift I feel awkward and weird, and I almost never seem to find that perfect gift for those I love.  So maybe this is a reflection of my discomfort with both giving and receiving material gifts.  I don’t know. 

But today, this very minute, I pledge to stop.  I’m going to use my gift cards, I’m going to open and relish my soaps, and I will eat my chocolates before they’re ruined, all while reminding myself that I’m worthy of treats and lovlies.  I hope you love my lipstick color as much as I do!

Will you join me?

running · Uncategorized

IT Bandit

If you’re a runner my guess is that this arsenal looks familiar. It takes a battery of weapons to keep our joints, bones and muscles in top shape. 

My “Achilles heel” so to speak, is my IT band, and believe me when I tell you I have tried every bit of hocus pocus around to keep that ornery mass of tissue quiet. And, in my anecdotal experience, the only thing that’s truly helpful is the kinesio tape, and that has it’s limits.  I happen to have Gumby-esque flexibility, and even my efforts in self contortion have left me wanting. 

As it turns out, my husband has the same problem, but isn’t too keen on shaving his legs to get the kinesio tape to stick. So he asked his doctor (who happens to be a long distance runner), and I asked my PT. The answer we got from both was that stretching the notorious IT band is an exercise in futility. My PT recommend continued use of Kinesio tape, but my hubs’ doctor took it one further. He gave a recommendation I have yet to see elsewhere (which is why I’m sharing).  

He told him to strengthen his lower abs. 

We both do core work and have a matching set of six packs to prove it, so the hubs asked what in particular to do. 

Side planks. 

The muscles between the illeac crests is where the money is, and side planks are an ideal way to work them, with side leg lifts as a close second. 

The AHA moment couldn’t have rung louder. I had an emergency c-section for which the cut went illeac crest to illeac crest in order to get my son out of his wonky position. I have no strength or tone there as a result. 

I’m trying not to get carried away, (not that I get carried away with things) and working on those lower abs, with a smile of course. 

(Photography courtesy of Alex)


(This one included because if I think it’s funny and figure the world could use a laugh or two at my expense)

I’ll keep you posted on the efficacy of my new plan. 

running

Body Angst

Last night I was cozied up in my favorite chair (yes, the one in the header photo).  I looked down and noticed with dismay that my tummy was pookey.  I exercise an awful lot, but it seems that no matter how strong my abs are, when I relax them they look like the Pilsbury Dough boy got poked too hard.  I sighed, wondering if I should redouble my efforts to reign them in or go get another row off the Hershey’s bar I’ve been working my way through. 

Then I noticed, my dog.  She too was cozied up in her favorite spot, our giant bean bag, and I saw her tummy, which was also pookey, but she didn’t care.  She’s blissfully unaware of her appearance and of anyone’s opinion thereof.  Oh, to be Abbi.  And it occurs to me that I’m measuring myself with the wrong stick again.

I’m approaching 43 years old and I still don’t have a grip on my body image.   I see every flaw magnatized, every ounce of fat and cellulite dimple as failure.  I grade myself with no mercy every time I pass a mirror, and I don’t know how to get off this gerbil wheel.  I am aware that this doesn’t happen in a vacuum, that even if I don’t verbalize this toxic perspective that I unwittingly pass it along to my daughter, and I feel powerless against it. 

Where do I go from here?  How do I get my head on straight and learn to love myself and accept my appearance?  How do I get past feeling like I need to have a perfect figure?  Or do I buckle down and work harder and more until I attain it, which I know will just lead me further down the rabbit hole, always striving, never reaching?  This article from The Guardian suggests as much. 

In a world that holds up ridiculous and unrealistic standards as ideal, it means they are always doomed to fall short.

Because of course, all the exercise in the world won’t make me a C cup, so if I do achieve that perfectly fit and toned look, do I buy a set of boobs to go with it?  What if it’s still not enough?   I doubt it ever will be, and if it is, it won’t last.  Surely the effects of age are bound to impact my appearance beyond the gray that graces my head.  

And I still have no solutions.  

I hope that some day I can cherish my body for what it is, that I can take a cue from my dog and frolic, running and playing,  enjoying everything I have the capacity to do while paying no heed to my imperfections.   Some day. 

Gardening · Uncategorized

The Garden’s Bounty


And so it begins. With giddy elation I brought in the first zucchini from my garden today.  I’ve been nurturing that ground since April, and though we’ve had plenty of asparagus (which is perennial and requires little care), this is the first of my annual fruits. 

Ah, what to do with this beautiful specimen?  Muffins?  Stir fry? Sauté in butter?  The possibilities are enticing!  

This little guy is alone on the counter for now, but the time will come when the produce will roll out of my garden in bunches, too fast for handling, and I’ll feel like Ethel and Lucy in the chocolate factory trying to keep up with the bounty. 


I’ll give some away, can what I can, (get it?) and generally annoy my husband with my lack of planning and ridiculous quantities of some things and utter lack of others (and my crooked rows, my rows are always wonky and it drives him up a wall).  

Then suddenly, one day a frost will end it all. 

But today is the day of the first fruits. A day of celebration, a day of beginning. Today we eat the sacrificial zucchini.