special needs parenting

Joy is an Act of Resistance

Yesterday was a day that started out dicey and slid down the slippery slope to an urgent visit to a psychiatrist and social worker at the Community Mental Health office. Tears were shed, cuss words were uttered and there were some awful moments for every single family member.

In the morning we had discussed having a fire in the fire pit and eating dinner outside. Even after the kerfuffle that kept on escalating, we managed to have our fire.

It seems obvious that when your day completely derails to admit that it's simply derailed and hang it up.

But I don't believe it.

Our fire was a bold statement. A statement that screamed that the awful moments won't define us. That we refuse to surrender to the chaos. That we will continue to pursue joy no matter how elusive it is.

So we had our fire and we laughed and had s'mores and lived. At the end of a fractured, derailed day we came together and declared that we will continue to try. No matter what.

This isn't denial. We know how close we were to disaster, it's defiance. We will not let our derailed day define us.

It's resilience, the act of getting up again and again no matter how many times the rug is pulled from beneath us.

It's resistance, refusing to slide down the slippery slope into despair.

It's a way of communicating our determination to win the war even when we lose the battles.

It would have been easier for two exhausted parents to just throw the food on the kitchen table and claim every right to give up on the fun we had planned. It might have been the obvious choice, but we would have missed the fresh air, the communion and teamwork that happens when you enact a plan together.

We had our fire and it was good. We ended the day with a fresh cherry of joy and a dab of whipped cream on top of the sundae we had to pick up off the sidewalk.

parenting · special needs parenting

6 Ways to Keep Your Sanity When Your Kid is a Handful

Alex is a bit of a handful, Ben is both hands overflowing. There are still many days when I'm about to tumble right off the deep end, but I do have a few sanity savers that keep me just this side of the brink.

  1. Locks and gates. I keep areas of my house cordoned off and keep the kids in the house. This means I can shower, drink my coffee and just function as a human being. It doesn't make things easy, but it keeps my kids safe. We literally lock the kids in the house. Elopement is real and it's terrifying. I found Alex about a mile away one morning when I got up. Keeping the kids in the house means they're reasonably safe.
  2. I have a mom clan. Not that I ever get to see them because their lives are just as zany as ours, but I can hop on social media and find the women who get it and know that no matter how ridiculous my life looks, they will never second guess or judge.
  3. I exercise. Without my runs I would completely lose my mind. I don't know if it's the runner's high or just the mental organization that comes from movement and nature, but man alive I need my runs.
  4. I've learned to let it go. Whether it's the frustration or upset over my own mistakes or the latest meltdown from the kids, I pretend I am putting a leaf into a stream and watch it float away. Sometimes I have to release it a few times before it goes away completely, but thankfully my stream can handle as many leaves as I need to place in it (and occasional logs too).
  5. I cultivate meaningful activities at home. I get great satisfaction out of cooking and baking and gardening, all of which I can do in those precious minutes when my kids are entertaining themselves. (With help from the door locks so I can turn my back for a few minutes). Being creative and having meaningful activities when I feel stuck at home reminds me of my own identity and value aside from just being the mom.
  6. Live in the moment. Rehashing the crap and worrying about what might be coming will rob you of your joy. It's easier said than done, but so worthwhile! The leaf in a stream works for worries too. You don't have to get mired in what ifs and should haves!

This is my list, but it isn't the only list. Everyone is different so these may or may not work for you.

I would love to say "take a break" or "take time for self care", but I know there are far too many days that those are impossible. In fact if it wasn't for having a husband who is just as committed to exercise as me I'm sure that would fall by the wayside as well.

Uncategorized

Sitting on the Porch Swing

The life-affirming heat of the sun is scorching on this otherwise chilly morning.

My to-do list unrolls like a cartoon scroll in front of me. I'm choosing to look the other way for a moment, but the moment keeps stretching out in front of me.

There are so many tasks demanding my headspace that I feel guilty for indulging in this extended pause of my day.

I shove the guilt back into the box it emerged from and sit on it. I feel it shaking and protesting beneath me, as I stubbornly stay put.

Once set into motion this day will continue on it's own momentum. Phone calls and housework and the care and keeping of young ones. I'm certain it will spill over into tomorrow and endless days following.

I'm ignoring all those tasks screaming for attention and being. Just being.

Somewhere in this being I recognize someone I love. Someone I neglect. Someone worthy. I nod a silent greeting to her, wink, and toss that box of guilt off the porch rail to the ground below, out of sight. We decide to sit and catch up for a few more minutes. It seems like this impromptu connection deserves coffee; alas, if I move to perform even that one task, the spell will be broken and the to-do list will unfurl and demand to be reckoned with.

So I sit on the porch swing with my beloved and we commune for awhile longer.

And she is lovely.

And she is me.

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.