parenting · special needs parenting

My Life Feels Like a Test I Didn’t Study For

A friend posted those words yesterday and I tried them on to find a perfect fit. 

Remember those swimming tests you had to do to get the special arm band at summer camp, you know, the one that meant you could swim wherever you want?  Those tests terrified me. 

I had what could (perhaps slightly dramatically) be called a near drowning as a toddler. It’s one of my earliest memories, being under the water at my aunt and uncle’s in ground pool on the nation’s bicentennial. I didn’t lose consciousness or anything, and my dad scooped my out relatively unscathed, except for a lifelong fear of deep water that kept me from completing swimming lessons when I was too terrified to jump into the deep end of the pool. 

Regardless of my lack of swimming instruction coupled with the ability to sink to the bottom of the pool and remain there with zero effort which has left me a remedial swimmer well into adulthood, my fear of missing out demanded that I not be left in the shallow area of the lake at camp. So, by sheer force of determination, I took (and passed) the swimming tests at summer camp every year.  I always started out convinced I would drown, but somehow managed to keep my chin just above the water line for the full time mandated to get my armband of freedom. 

And now that’s how I live life every day. 

When we got married and started having kids I had no notion that anything other than 2.3 typical children would be our end result.  I didn’t realize how intimately acquainted with terms like “translocation 21:21” or “ganglion cells” or “bone anchored hearing aid” I would become. Or that it would be a sink or swim style test that I had no preparation for on an almost daily basis. 

But here we are, and today I am reminding myself that I haven’t drown yet. 

The test is different every day. Often I pass like it’s no biggie. There are times, though, when I need a lifeguard to throw me a floatation device, and there are days when I have to grab the dock and climb out of the water because my nose is barely clearing the surface. But most days I pass the test.  Thoses days when it’s a near miss, they blow my confidence, but generally leave me unscathed, though I never quite get past the fear of drowning. 

Life feels like a test I didn’t study for, but I’m learning that I pass it almost every time, even if it’s by the skin of my teeth, and even on the days I don’t pass, I survive to try another day. And I think I’m learning to be okay with it. 

running

Putting the “Running” Back into the Writing, Running Mom

I haven’t written about running hardly at all in months. Because I have hardly been running at all in months. 

I could say it’s because of my vein ablation or the busyness of moving, but those would be excuses and I’m a no excuses woman. 

The real deal is that sometimes running is hard. Really hard. Like, I’m somehow prompting my legs to move forward by force of will and I look down to find the darn cheating things walking instead of running. So I goad them back into a run, and low and behold they quit on my again. 

And in those times I wonder if I’m just not trying hard enough. Or if my determination or desire is the problem. I don’t rightly know. I just can’t make my legs do what I’m telling them to do, even under duress. 

I walked a lot, but walking isn’t running. It doesn’t cleanse my soul and mind the way running does. It’s good, lovely even, but it doesn’t make my spirit soar. And I have a spirit that craves a good whoopdeedo on the air currents. 

Whether it’s because I’m stubborn or stupid, I keep trying. I’m always just sure there’s some super secret combination that will unlock the run for me again. 

Don’t tell anyone, but I think I found it. I’m not sure exactly what it even is. I stumbled upon it in the dark somewhere and unlocked my chutzpah.  I’m back. (Maybe, I mean, at least I think I am). 

It’s nothing special, except to me, but doggone it, the past few weeks when I tell my legs to run they do it. I don’t catch them cheating these days by sneaking in a walk while I’m not paying attention. And I’m pretty sure those two ton ball-and-chains that had been shackled to me fell off a ways back, because my legs feel like legs, not like cement bags. 

I’m a touch slow on the uptake, but I do believe that sometimes my body can tolerate and thrive on running, and sometimes it can’t. (I know, quite the in depth analysis, no wonder the epiphany took so long). But right now it can, and I’m going to run with it!  

special needs parenting

Letting Go of Hope Was the Best Thing I Ever Did

It happened after leukemia treatment ended.  I had spent over three years during treatment waiting for everything to get better, and then it didn’t.  I gave it time, it still didn’t.  I gave it more time.  You get the picture.

Since bringing Ben home, I had consistently set my sights on the next hill, just knowing that once we got past that next hill the downhill roll would begin, and his quality of life would dramatically improve.

And so would the rest of ours.

It happened over and over and over.  Sometimes things would get better, but it never lasts.  And you know what they say about hope deferred.  I lived for years with the heart sickness of deferred hope.

Until I let it go.

Don’t get me wrong.  We’re still diligently pursuing every avenue possible to give Ben the fullest, best life possible.  I’m just realistic that he has a complex, convoluted situation, and that we need to live our best lives in the present rather than chasing an elusive dream of an idyllic, or even normalish, future.

In so doing, I have avoided the devastating crash of the next wave coming, because instead of stubbornly believing that it isn’t coming, I’m dutifully preparing and watching for it.  Instead of constantly setting my sights to an unlikely future, I’m living today and working to make it the best today possible.

By being realistic that each day and the foreseeable future will be just as challenging for him, I can manage our resources to make sure each day is the best we can make it with the challenges instead of wishful thinking of coming days without challenges.

Letting go of that wishful thinking nearly crushed me.  I so want for my boy to be happy and healthy in every possible way, and admitting that the next breakthrough wouldn’t necessarily make that happen was a paradigm shift of epic proportions.  It left me learning a whole new way of coping with life with the complexities of my child’s needs, but I did learn.  I learned to be more steady and cautious with my energy and optimism, and to live fully, focusing on each day and giving it my best in the moment.

And though letting go of hope comes with a certain sadness, it also comes with freedom and peace.

Uncategorized

10 Things That Happen When You Have An Unusual Name

Picture this:  

It’s March of 1973 and a couple is expecting their third child.   Deciding on a name in case of another girl proves fruitless (they already have two well-named girls), and mom has been trying to convince dad to name this one after her grandfather (and it’s going over like a lead balloon). 

They sit down to watch the show “King Fu”, (about a Buddhist monk in the old west) and Jodie Foster is playing a girl named “Alethea”. Mom slyly sees an opportunity to nickname the baby “Lee” after her grandfather and both parents agree to the name (and hope for a boy). 

Having an unusual name has it’s ups and downs. For example:

  1. I’ve never had to deal with being one of two or three people with the same name in any situation ever. 
  2. In fact I’ve never met another person with my exact name. I’ve seen Aletha’s and Althea’s, but never another Alethea. (Though I know they exist!)
  3. I’ve never had my name on any item, ever (unless you count “World’s Greatest Mom”.)
  4. I get nicknamed, whether I want it or not. 
  5. Mispronunciations can be comical. I’ve been called everything from Athena to Ophelia!  (It’s pronounced Uh-Lee-Thi-Uh). 
  6. Spelling it every time. Except to the few people who know Greek. In fact clergy always get my name right!
  7. It’s just about magical when someone gets it right, especially when combined with my last name, which is equally challenging. 
  8. It’s so exotic people ask me what country I’m from. (I’m Dutch/German from Michigan, for what it’s worth). 
  9. I feel loved when people use it preferentially (my husband often does and my dad nearly always). 
  10. I turned out to be just as unusual as my moniker, so it’s utterly apt. 
Uncategorized

6 Observations From an Hour at the Beach

Have you heard enough swimsuit conversation yet this summer?  If you’re like me, the answer is probably, “a million times, YES!”  But here I am with my two cents to throw into the conversation.

Yesterday, since our day was already a shit show, I decided that nothing could get worse if I took the shit show on the road, and since the boys love water, we went a few miles down the road to a local lake, in hopes that we could “blow the stink off” as my mom always said.

I don’t actually enjoy swimming, I think it’s because I sink like a stone and have zero coordination, which makes it ironic that I own quite the collection of swimsuits.

I’m constantly in search of the swimsuit.  The one that covers all my scars, stretch marks and cellulite, as well as flattering the girls and magically making me look like Gisele Bundchen, which not a single suit ever made could possibly do, but I hold out hope anyway.

For no other reason than my failure to shave my bikini area before our impromptu trip, I chose a skirted suit, threw it on, and took off.  (After slathering children with sunscreen, getting all the necessary equipment, and having to back up the driveway twice for forgotten items, that is).

Upon our arrival at the lake, I scanned the scene.  You know what I saw?

  1. A bunch of people, mostly women, in a wide array of swimsuits.  Not a single one of them looked like Gisele Bundchen!  NOT A SINGLE ONE!  (So that was a relief).
  2. Every single one of the women had flaws.
  3. Not a single one of them stood out.
  4. It didn’t matter if they wore a bikini, a tankini, or a one piece or any other combination.
  5. Not a single person showed any sign of caring that my girls aren’t perfect, that I have cellulite, stretch marks and scars.
  6. I’m not positive, but I’m pretty sure every other woman there had imperfect girls, cellulite, stretch marks and scars, or at least 3 of the 4.

In other words, every single person there was entirely nonplussed by the whole thing.  As a group, people were having fun, playing with the kids, beating the heat, and enjoying summer.  And on my way home I had to wonder why on earth we get so darned haired up about putting on swim suits.

I get it, I’m not the same as I was when I proudly stood on the dock in a bikini, posing for pictures at age 16, but neither was a single other person there; not a single one!

I don’t know where it comes from, this toxic obsession with looking perfect, but I, for one, am over it.  I don’t want to be self conscious, or believe that everyone expects me to be perfect or notices when I’m not.  That, my friends, is a load of crap, and I’m not buying it.

 

parenting · special needs parenting

When You Can Never Win The High Stakes Game

It’s a high stakes game, this parenting gig. We have precious little folks that we’re responsible for turning into responsible adults, and there’s no single right way to do it.  With all of the factors going into human nature and nurture, getting it right for each child seems to be a crap shoot at best.

Then we add in developmental differences and the learning curve steepens, necessitating therapies and strategies that typical parents never have to consider. Or even the odd combination of phases that occur when cognitive development is delayed. For example, Alex is 15 years old, and is mature and savvy about many things, but has just discovered lying. You know that clumsy way your first grader lies to cover for his transgressions?  We’re right there with a 15 year old.   It’s just as annoying as when a six year old gives it a whirl, but all the more ridiculous with Alex’s man-voice. Just chalk this up to another parenting issue I never saw coming.

Overall Alex is easy though. He’s pretty straightforward, and super fun and funny. His quirks just add a little dynamic to the game.

Then there’s the truly complex child.

I took Ben to a new psychiatrist last week and she was stymied. She called him bossy, challenging, severely hyperactive and puzzling. And that was only a snapshot from 30 minutes in her office. Maybe it was the complete meltdown that resulted when she told us to go, then called us back into her office that bemused her. Or it could have been him splaying full out on the floor of the waiting room when our exit was delayed. Or any of the couple dozen uncomfortable interactions in between.

In this high stakes game I don’t know how to win. My child leaves experts at a loss.

I know he needs me to stay calm, but sometimes I lose my cool.

I know he needs structure and routine, but how do you stick to it with appointments and phone calls and all the necessary behavioral interventions?

I want more than anything in the world to do the best and be the best for him, but I swear it’s like being an actor and switching from “The Jungle Book” to “Rain Man” with “What’s Eating Gilbert Grape” running constantly in the background.  All along I feel like I should be Mary Poppins.

I can’t keep up. 

I can’t switch gears fast enough. I have a hard time hugging when I just got kicked in the face…even though I realize he needs it. I have a hard time playing after recovering from an epic public (or private) meltdown. And that’s not even taking into account the learning and medical needs.

How do I keep up, let alone maintain the therapeutic environment he needs to thrive.

When I write it out I realize how impossible it is, yet I sink into an abyss of guilt when I fail to be absolutely everything he needs, plus parenting my other children.

This is no attempt to garner kudos or warm fuzzies, there is nothing anyone can say that can change the truth.  The kind words are nice, but it doesn’t change our reality.

 

Yet we carry on, ever moving forward, and keep trying, trying, trying.  He’s our baby.  How can we not?  How can we ever stop trying?

Someday, maybe, we’ll find someone who can really help.  Each day we get up resolving just that.