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9 Random Observations About Moving 

After a relocation process of over three months, our family is now settling in at our new house…our dream home. 


It’s been a happy process for us, set in motion by a promotion for my husband.  We anticipated many of the changes, though a few managed to blindside us.  But it’s the day to day details that stymie and delight us most. Such as:

  1. It is actually fun to clean a new (to me) house. I’m certain it won’t last, though. 
  2. Shopping at a new grocery store is terribly disorienting, especially when you’re hangry. 
  3. No matter how much you love your new home and yard, you will be compelled to change things to make it your own. 
  4. Having all new places to run will both thrill and discombobulate you, especially when you know exactly how far every possible run in every possible direction from your house is. 
  5. Cleaning and showering with different water changes everything. (Hair!)
  6. All family members (dogs included) will have emotions to process in their own time frame.  
  7. There will be many wrong turns because you have no idea where you’re going. (I just call it exploring and roll with it.)
  8. Figuring out new light switches. 
  9. We walk about an extra mile a day around the house trying to remember where we  stowed things.

It’s been over 15 years since I’ve moved, so this is a whole different ballgame for me. We’re still in the state where we’ve always lived, but an area we haven’t previously explored.  Change is exciting…and disorienting, but for me, mostly a whole new adventure! 

cancer · special needs parenting

What is the Problem With Using Scripture Out of Context?

I posted this scripture to Facebook about 6 months into Ben’s treatment for leukemia, 7 years ago today.  I posted it to comfort myself.  Everything in our lives was being devoured by locusts, and I had to find some hope that there would someday be some recompense.  So I looked to scripture, and voila!  It’s in the Bible, God’s word, and I took the coincidence of finding that scripture on a day that it was something I desperately needed to hear, and embraced it.

Without considering context.

Today I looked up the whole passage, then looked up commentary on it.  Chagrined is a good word to use to describe how I’m feeling about now.  This chapter of scripture is written by a prophet.  What do prophets do?  They warn the Israelites when they have strayed from their end of the covenant made with God, and warn them to get back on track, then he reminds them of God’s promises for when they return to him.

This verse has nothing to do with childhood cancer, life after childhood cancer, or any kind of promise God is making to me as an individual who has endured suffering.  

I wish it was about me.  I wish it did work that way.  I loved reading scripture that way.  When scripture is read out of context with individual verses used as reassurances, promises, and warm fuzzies for our own lives, it feels good!

Until it doesn’t.

You see, I clung to verses like that.  I decided that God owed us one, or a few.

Between our family members, we have had more than a few locust eaten years.  Two back surgeries for Mike, neck surgery and GBS for me, and Ben has had only brief periods of his life, months out of his eleven years, in which he has been both physically and mentally well.  We parented our niece whose mother died of a heroin overdose, and lived out her heartbreak on a daily basis.

It’s easy to see why I would want to believe in a God who restores those years, but that’s not the only verse so commonly used that way.

The LORD your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will.  Zephaniah 3:17

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.  Jeremiah 29:11

Both of which are taken out of scriptures that were used to rebuke and remind the Isrealites, not for a mom desperate for a better future for her family.

And there are dozens more.

I put my hope in those promises that were never meant for my circumstances.  The end result was devastating.  I had myself convinced that when Ben finished his leukemia treatment that we would be rewarded for our faithfulness, not only in those years, but so many before, with restoration.  The devastation from the realization that he will be forever impacted by late effects of chemo and the other illnesses, both physical and mental, which make almost every day in his life an enormous challenge has been monumental.

In retrospect, I believe that my own, and many others, well-meaning use of scripture in this fashion is misguided at best, and could easily be considered sacrilege.  It’s an easy button for comfort.

It has to stop!

In my own experience, what would have been far more effective, kind, and beneficial, would be sitting with us in the pain.  Stepping into the gap and sharing the burden.  Instead of quoting scripture out of context, read the scripture, especially those red letters in the gospels, and apply it to your own life and be the gospel in action.

 

parenting · running

Staying Active in Order to to Stay Active

It rained this weekend, a socked in, chilly spring rain. So this afternoon when the sun finally peeked out we had plenty of stink to blow off. I hauled the boys outside for a rollicking game of frisbee with a little tug-of-war with Meg and fetch with Abbi thrown in.  

We shared some laughs, mostly courtesy of Meg, and Alex taught me how to dab and nae nae, which evidently means I’m almost as cool as Betty White. (Apparently I have some work to do).  

It was bliss

I kept thinking that this is what life is really about. Horsing around, laughing and making memories together. 

And it occurred to me that I want to keep doing this kind of thing. Not just until my kids are grown, but as long as there’s breath in my body.  

I took a moment to deeply appreciate today, realized that I am not guaranteed another second here, and yearn for the ability to continue to create and enjoy moments like this.  

It’s at the core of my passion for exercise. Activity begets activity; I stay active so I can stay active. When someone suggests going for a hike, I want to be the first to don my boots, not only now, but for as many years as can.  When I see those videos of octogenarians running marathons, I don’t just find them inspiring, I want to do it. 

Every single step I take today is an investment in the steps I want to take next year, and every year after that, hopefully well into my 80’s or 90’s. And every single step I take today is a return on the investment of last year’s steps.  

Lastly, movement is an act of gratitude. Gratitude for my health, my ability, my strength. It’s not lost on me how fleeting it all is, and that my ability could be altered this very day. While I do hope to maintain it as much and as long as humanly possible, it’s not entirely up to me when or how it will no longer be possible. So today, while I am able, I will be active as an act of gratitude and investment. 

Uncategorized

Welcome to Holland? Or Welcome To The Amazon…

 

There’s a popular poem about the experience of parenting a child with a disability called “Welcome to Holland“.  It was an apt description of how I felt when we found out and processed the fact that Alex has Down syndrome.  However, I find it lacking for the more significant disability Ben has, so here is my own analogy:

When you walk through the woods near your home, you’re exploring. It’s fun, interesting, and exciting. While doing such things I have come across snakes (the Eastern Hognose variety), raccoons, unknown dogs (one who attacked my dog and me) and occasionally people I don’t know. Doing that exposes me to more variety and slightly elevates my danger from that of staying at home.  It’s a good, wholesome, fun, enjoyable, and completely normal thing to do.

That’s what having a typical child has been like for me.

When I visited Arizona I went for a run on a public property near the home of my in laws. There were cacti all over the place, and I made mental notes that snakes that I might encounter would be of a venomous type, and that even such things as ants, which in Michigan are fairly benign, could cause me real grief.  It was a bit more nerve wracking, a bit more exciting, and overall a great experience.  I recognized that I was outside of my comfort zone, but it was within a reasonable proximity of normal, and it was more of a mindset change than anything else.

That has been my experience parenting a child with Down syndrome. We took normal and kicked it up a notch.

The territory we unknowingly entered with Ben is more akin to an equatorial jungle. The vegetation is so dense that making headway is arduous and slow, but doable. The variety of the flora and fauna is stunning.  And terrifying.  It’s crucial to remain focused and attentive every second, even sleep is a luxury during which a certain vigilance must be maintained.  Specialized equipment is necessary to survive. Dangers lurk on every branch, flying, crawling, swimming.  A brief break from watchfulness could land you in a life or death situation.  It’s incredible it’s not for the faint of heart; only small populations live there, and tourists are few and far between.

This is life parenting a child with complex medical, developmental and mental health needs. It’s life on the edge.

We’re a highly specialized bunch, it’s adapt or die here, and adapt we do.  We develop skills and equipment to manage our extreme environment, always looking for the next breakthrough. We’re capable and savvy, though a bit more fierce than most civilized populations.

In the welcome to Holland poem, the comparison is Italy to Holland, but if you were planning a trip to Italy, imagine how woefully unprepared you would be in the jungle.  Even for us, planning another trip to Arizona, would be completely lacking in equipment and skills for the actual journey we’re on.

That’s where this analogy differs from the Holland analogy.  This isn’t a trip that we’re fairly well prepared for, this is being dropped into a place where we don’t have the knowledge, skillset or equipment to survive, we have to ad lib the whole thing; our only skillset is improvisation and the will to survive.

The most implausible part of it all is that we actually succeed at it; by sheer determination, fueled by passion and love.

dog · parenting

Or What if I Simply Shed The Regrets?

I almost did it today. 

I was this close!!

I got most of the way through the day without swearing. 

And my house is pretty tidy, if you don’t look to close. 

The laundry is washed and dried, it just needs folding. 

Our meal was really healthy…leftovers. 

I got my self care in…while doing Ben’s flush and getting him snacks. 

I got my dogs out for their walk…after they were home alone for hours. 

The bills got paid!  (This one I actually did!!)

And I never feel quite adequate. 

And I always feel like I monkey around too much. 

And when I spend an hour a day exercising I feel like I should be more industrious.   And when I’m industrious I wish I had taken time for a workout. 

When I take the time to repurpose a chair I regret not packing (or cleaning or being more productive). And when I spend hours packing I longingly look at the chair I’m dying to paint. 


(The chair got painted by the way)

Most days I could go on like this infinitely; world without end. 

The other day my sister jokingly called the story of her life “Choose the regrets you can live with.”  (I believe she meant large scale regrets, and I’m totally taking liberty with it). 

Choose the regrets you can live with. 

I paid the bills, because that’s a regret I know don’t want to live with. 

Long term, I’m not willing to regret a life without regular exercise. 

Long term, I am willing to accept a never-quite-tidy-house.

I’m willing for some things to take the back seat in order to have the time and energy to nurture my marriage and my children  I’m willing to let some things slide in order to stay emotionally and physically healthy enough to manage our household   

When I look at life through that lens, it’s easy to decide what gets priority.  Myself, my marriage, my kids, in varying order depending on the circumstances. 

It might take some getting used to, deciding to just suck it up and live with certain regrets. It seems I’m awfully good at wallowing in them instead. 

And so far that’s gotten me a grand total of nowhere.  

Except sapping my energy. Or beating myself up. Don’t forget wasting time agonizing over taking care of myself. 

Because that’s productive. 

Ya know what?  I’m pretty proud of my chair. After a workout my brain is organized, and I’m more effective in my tasks.  

So what would happen if I simply shed the regrets and listen to what I know my family and I need…with a cuss word thrown in here or there for emphasis. 

parenting

Am I The Only Mom Who Doesn’t Dig Mother’s Day?

I like the idea of Mother’s Day enough, I guess.  It seems like a grand plan to set a day aside to recognize the matriarch of the family, but on this, my 19th Mother’s Day as a mom I’m coming out to say I just don’t give a hoot about it. 

For starters I’m completely uncomfortable with any special recognition as a general rule. It makes me queasy. But if I don’t get it on a day set aside for it, well that’s yucky too. 

And I hate the pressure. I want to recognize my own mom, but what do you get for a woman with distinctive tastes who has had over 70 years to obtain anything she might fancy?  The usual hanging flower basket, or should we mix it up with a Starbucks gift card this year?

Here’s the thing, I know I’m kind of a badass, and while I enjoy occasional kudos, I prefer the impromptu type over obligatory.  So save the love for the day to day moments of good and bad. It’s a lot more meaningful to get a spontaneous hug and “thanks mom” than a cheesy card with a photo of still life flowers. 

But I can get behind a family brunch with some tasty treats, so I’m focusing my efforts there.  Because anything that promotes consumption of chocolate is a movement I can support.  

parenting · special needs parenting

If You Happened To See Us In The Store The Other Day

You might have wondered what on earth was going on.  We stopped briefly to get cupcakes for Alex to share with his friends at school for his birthday. I zipped up an aisle to get some flour to fry up some morels and Ben lost it. I wasn’t sure what the trigger was, but since we had what we needed, I hurried to the checkout lane and tried to distract Ben, which didn’t work. At all. 

I debated the best course of action and decided that Alex deserved the cupcakes I had promised him, come hell or highwater. 

I herded Ben over, hoping to contain him in the lane, but that didn’t work either. Ben kicked Alex, angering him, then lashed out at me. 

We managed to get our things paid for and tried to leave, but Ben froze. 

I wound up wrapping myself around him, hauling his 85 lb. thrashing frame across the full parking lot to the van, where Alex waited, having gone ahead. 

Ben’s meltdown lasted the 10 minute ride home, then a solid half hour (possibly longer) once we got home. 

I found out when we got home that Ben had spotted birthday cakes in the aisle with the flour and wanted to choose one for Alex. 

Had I known I would have just let him.  

If you’re wondering why I didn’t punish him, it’s because it doesn’t work. Did you happen to see the movie “Rainman”?  If so, maybe you’ll remember how upsetting it was to Rainman when Charlie got angry. It doesn’t work, it doesn’t help, it just escalates an already out of control situation. 

If you’re wondering why I didn’t just walk out, I knew when I walked in that there was a certain likelihood of Ben having a meltdown, it was a calculated risk, and I walked in prepared to follow through and get Alex’s birthday treat. 

If you’re wondering why and how I stayed calm, it’s from years of practice, and because “low and slow” is what keeps things from getting worse. I will admit that sometimes it’s harder than others to keep my cool, and that sometimes I don’t, but when possible, it helps. 

If you’re wondering if there was something you could have done, that’s a very good question. Maybe. Sometimes an unexpected occurrence, like a stranger stepping in, aborts the meltdown, but it’s equally possible that it could have escalated things. 

If you suspect that I’m a crappy parent, some days I am, and some days I’m a pretty stellar parent, and most days I’m fairly decent, just like most other parents. My parenting isn’t the cause of the meltdown though, those are a complex combination of factors that I only wish I could control. 

If you think he’s always like that, he isn’t. Ben is a complex and dynamic human being. Sometimes he has meltdowns, sometimes he’s so sweet he melts my heart, sometimes he’s feisty and funny, and there are oh, so many more adjectives could describe him. You saw a snapshot. Just like you can take a photograph of an attractive person that catches them in an ugly moment, you caught a rough moment in time. He does have those, but they don’t define him. 

If you feel sorry for him, us or me, please listen. Compassion and empathy for a challenging situation are welcome, but we don’t need pity.  We need acceptance and pity won’t get us there. We need to keep giving Ben opportunities to go out because the less he does it the harder it gets. So we’ll keep taking these chances and sometimes he’ll do okay, and others he’ll have meltdowns. For his benefit and everyone else’s, we’ll keep going out, because isolation isn’t an option. 

Here are some photos of Ben on happier days. And when you look at them I hope you see how worthy and treasured he is.