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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.

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A Long Series of Lasts

As we flipped the calendar to May it marked our last month of living in this comfortable ranch we have called home for over 15 years.  I don’t count myself as nostalgic for the most part, but I do take note of the things we won’t ever do here again, or a long series of lasts.  For example, in April, we made our last payment on this house, which marked the first last that I noted.  But before that we had our last Christmas and Thanksgiving here, which were unbeknownst to us at the time.  Shortly after our last house payment, we had our last Easter, and now, in this last month, there will be innumerable lasts.  Small things like the last time we bring the trash to the curb, will actually feel monumental.

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When I ran in the woods last week, I noticed the trilliums in bloom, and realized that I won’t enjoy them here again next year.  As I always do, I stopped to enjoy them, but this time with a touch of melancholy, knowing that this annual gift that I delight in will go on next year without me here to partake in their beauty.

In my eagerness to leave, to move on to our dream house, I am loath to leave this home without recognizing the provisions we have enjoyed here for so long.  I hope to say a long goodbye, recognizing a series of lasts in which I give gratitude for all that we have enjoyed here.

Even as I type that, I am reluctant.  I have a root of bitterness because these past 15 years have been a protracted series of hardships which inundated us.  When I think of this place I think of years of chaos, and frankly, I yearn to leave the chaos here when we go.  I leave this place in hopes that we leave behind things like back and neck surgeries, GBS, family deaths, and all the many, many ailments Ben has encountered.  We have cried too many tears here, and I covet a change, not only in setting, but in the depth and breadth of hardships we will face.

I have given myself permission to hope again, after long since relinquishing all optimism and resigning myself to simply enduring.

Yet this home has been a safe place to land, a place where we have lived and loved and grown together, a shelter from the world.  In the comfort of this place we have become unified, strong, and resilient.  May this home provide the next family who lives here such warmth and shelter.

 

 

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What Happens When a Frugal Dutch Girl Starts Tossing Junk

At the very start of the relocation process we proclaimed that we would not move anything that, upon unpacking, we’d scratch our heads, wondering why we actually put it in a box and onto a moving truck.  Well, my husband proclaimed, I reluctantly agreed. As such began the purge. 

A little back story, I’m Dutch. The Dutch are notoriously frugal. 

Frugal:  sparing or economical with regard to money or food.

The trendy term is minimalist, but I was minimalist before it was cool, pretty much from the womb, in fact. I don’t buy much, but once I own it, I keep it, determined to put it to as much use as humanly possible. I’m pretty sure that in the Dutch language waste is a four letter word. Not only do we not buy much, we keep what we buy. 

Thus, this whole purging thing felt pretty much like blasphemy to me. 

Reluctance is the name of my game. Every item picked up gets careful consideration and a second opinion from my husband, whose universal answer is “toss it” (Shoot). I’ve always been good at the donations.  Armed with a pen and notebook I take careful inventory for tax deductions then take pleasure in dropping off the items at our local nonprofit which sells our items to provide support local families. Having volunteered for the organization I’m fully bought in and have zero qualms about sending them anything useful. 

It’s the throw away pile that kills me. 

Like the name meaning photo that was all the rage in the 90’s when we got married.  It’s been quietly hanging above our beds declaring our gifts to the world for almost 16 years in this house and 22 years total. I’ve never actually liked it. But tossing it?  Certainly there’s some value left in the warped page…

And our Christmas tree. Purchased from Target for $69.99 eleven years ago, just to get us through a couple of seasons. It started out pathetic and grew to be just hideous. I’ve taken pride in leaving it as wonky as possible and considering it my “Charlie Brown Christmas Tree”. But in our new house, a log house with cathedral ceilings and a stone fireplace, it simply won’t do. A majestic real tree will take it’s place this year, but not without a moment of silence for our beloved junker that will probably be found in an archeological excavation in the year 5872 by foljs wondering what the heck we did with such things. 

Once I got going this throwing away thing has it’s perks. It feels like freedom!  Like shedding skin! It is spring after all and suddenly the momentum is building and I’m hauling garbage bags from one room to the next, cackling as I go and skipping as I drag the overflowing dumpster to the curb, weighted down with 16 years worth of accumulated crap. 


Not that I’m getting carried away or anything. 

My husband who started the whole purging process in the first place can now be seen rushing to pack boxes as quickly as possible, attempting to save the last vestiges of our 22 years worth of accumulated household belongings.  It’s a hysterical race to see who gets the most stuff in their pile. He’s winning, but I still stand a chance. 

Nope, I’m not getting carried away at all. 

silliness · Uncategorized

9 Reasons You Won’t See Me Drinking a Unicorn Frappuccino

Out of the blue I’m seeing this Starbucks Frappucinno that looks like cotton candy swirled with sin. From the first moment I saw it I swore I’d never taste a sip, and for good reasons:

  1. I might default on my mortgage to pay for it. 
  2. I happen to be awfully fond of my pancreas. 
  3. My imagination is a touch too active and I get the heebeegeebees over the idea of partaking of a unicorn. 
  4. I’m afraid I’ll hate it and be salty for a week over spending all that money on a lousy drink
  5. I’m afraid I’ll love it and crave more. 
  6. My mama taught me I don’t have to do what all the other kids are doing. 
  7. If I’m dropping my hard earned cash at a Starbucks there had darn well better be caffeine involved!
  8. A fairy dies every time a barista mixes one. 
  9. But mostly because I’m stubborn and ornery. 

I’m passing on this craze, after all I’m pretty partial to my preexisting cravings, but if you do claim to partake, it didn’t happen unless there’s a selfie involved; bonus points for a Snapchat filter!

running · Uncategorized

The Pros and Cons of Lularoe Workout Capris

I have been outspoken about my opinions on Lularoe; opinions which are essentially based on my annoyance at being added to sales groups without the consultant or party holder asking first, which means that I despise everything about them on principle. So in a brilliant move, my friend Kristy challenged my prejudice.  She offered to send me a pair of workout capris in exchange for a completely honest review. 


I got the capris, here’s my review:

PROS:

They’re cute!  The accents are fun and match one of my favorite workout shirts. 

The brushed lining feels delightful. 

They’re comfortable and I can move easily in them. 

CONS:

The waistband felt tight at first, and seemed to need breaking in. I’m pear shaped so usually waistbands aren’t tight on me. 

On first wear the waistband was stiff, it did seem to improve with time. 

They are not in the same league as my favorite brands, Brooks and Nike, which are dedicated workout brands, as far as both fit and performance. 

NEUTRAL OBSERVATIONS:

The fit is high waisted, especially in front. 

Tied in with the above observation, there was a bit of “extra” material on my lower tummy, which could be because of my build. 

I don’t plan to wear them in hot weather because the soft fuzzy lining wouldn’t be ideal in high sweat conditions. 

BOTTOM LINE:  

These are cute, comfortable capris which would be great for walks or other light to moderate workouts. If you’re a serious athlete, they won’t perform like the dedicated athletic brands, so you might be disappointed. Overall a good pair of capris for a day of light to moderate activity. 

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I Will Never Stop Saying How Beautiful You Are

I’ve seen this viral Facebook post several times, and each time I see it I read it.  And each time I read it I’m puzzled.

We write poems about the beauty of a sunrise.  We photograph the breathtaking vistas of the mountains.  We see beauty throughout this world and well into the universe.  I find myself just as much in awe of the human form, be it male or female, as I am of all the other beauty in nature, because human beings are part of the majesty of the universe.  Not only do we marvel at beauty, we have an innate longing to be beautiful, and to be told of our beauty.  Should I not fulfill my daughter’s longing?  Should I leave her wondering?

So while there is so much good in that viral post about showing our daughters what is good about activity and food, I cannot embrace it.  If I speak of the beauty of my dog as she bounds through a field, but not of my daughter as she does likewise, won’t she notice my silence?  If I am stunned by the glory of a perfect sunset, but not of my daughter’s eyes or hair in just the right light, what will she think?  And though I would never shame her for weight gain or loss, I don’t think it should go unspoken either; it should be a subject for discussion just like getting a haircut or having a cut, or anything else that goes with having a body.  It seems it would be unwise to make such a subject taboo or untouchable, I would much rather make it as common as speaking of the grass growing.  Our bodies do change, and we can discuss it.  We don’t need that extra 20 lbs to be the elephant in the room any more than we want it to be a source of unhappiness or shame.  Isn’t not speaking of our bodies and the changes they encounter just as shameful as insulting ourselves?  How will my daughter bring up a concern over a change in her weight if we have never spoken of such things?  If she is concerned, I most certainly want to know it!

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So yes, my love, do things because they empower you, because you’re more alive when you do them.  Use your body to mobilize your beautiful soul, but also, please, delight in the beauty that is you.  Because sometimes when I look at you tears well up in my eyes, taking in your glorious appearance.  I see your eyes in that certain light, and they inspire me like a sunrise.  Your hair is as glorious as a wildflower meadow in bloom.  Your youthful body is a stunning and fresh as my middle-aged body is confident and assured by experience and use.  Whether you can barely keep your size 0 jeans over your hips or you’re well into the double digits, you carry yourself with aplomb and grace that size cannot quantify.  And sometimes my darling, you’re simply cute.

And we will bake grandma’s cookies together and make healthy smoothies, and everything in between, because, you are lovely, in body, mind and soul.

Endovenous Radiofrequency Ablation · Restless Leg Syndrome · Uncategorized

My Vein Ablation Experience, Part 1 (Warning, photos of immediate post procedure at bottom of post)

I had part one of my vein ablation done today.  My procedure was Endovenous Radiofrequency Ablation, and was done on my left Greater Saphenous vein.

*Disclaimer:  This is a story of my experience.  This is NOT medical advice!  

I walked into the office just a touch on the nervous side.  The reason for my nerves was that I wasn’t quite sure what to expect.  My doctor had explained what to expect, but she cannot convey the patient experience, only the technicalities of the procedure.  That is one of the reasons I wanted to share this, because reading the story of someone’s experience would have helped me understand what to expect.  I had the procedure done at Liberty Surgical Associates in Holland, Michigan, by Doctor Liberty Hoberman, who is a board certified general surgeon.  Dr Hoberman has an excellent bedside manner, and confident, assured demeanor that adds to her technical surgical ability making her an excellent, well-rounded doctor.  When I arrived, the nurse showed me to a changing room where I put on a pair of disposable shorts.  Dr Hoberman does these procedures right in her office, so I was familiar with her staff from previous visits.

After being shown into a room, I met with the venous sonographer (Angela) who assists Dr Hoberman in the procedure who reviewed the details, aftercare instructions, and any questions I had before getting my consent for the procedure.  She then covered my lower body in sterile drapes and prepared the equipment and explained what she was doing as she went, while we exchanged stories of our weekends.

Dr Hoberman entered the room after everything was prepared, and double checked to see if I had any last-minute questions, and reassured me that the procedure should be only a minor inconvenience.

The ablation is guided by ultrasound, so the technician scanned my whole inner, upper leg and into my calf to get an overview of my vein, and the best place to insert the catheter.  Then came the pokes.  I lost count of how many, but there was numbing medicine to numb my skin while they injected numbing medicine around my vein.  The medicine not only prevents pain, but it insulates the area from the heat of the ablation.  This took the most time out of anything.  I’m fairly stoic and have no fear of needles, so it wasn’t a big deal to me, though some people need a little anxiety medicine to get through all the pokes.  During the pokes, the sonographer kept tapping my knee.  At first this perplexed me, but the reason is simple, it distracts my body and my brain from what is happening.  In other words, it is a simple way to give reassurance and good patient care.  I was told what to expect at every step, and reassured that everything was going well.

When the numbing was completed it was time to activate the catheter that had been inserted into my leg, below the knee, earlier.  I was told that if even a twinge of discomfort came up to let them know so that they could stop and add more numbing solution to the area.  The machine came on with a high-pitched sound, I honestly expected to feel something, but didn’t.  I saw the temperature rise to 120 degrees, and wondered how that low of a temperature could ablate my veins, the realized that it was in Celsius, not Fahrenheit.  (gulp)  I didn’t like that part, nope, not at all.  It was a bit of a mental trip, but it made no difference, I couldn’t feel it.  They moved the catheter down my leg in measured increments to completely close off the vein.  Toward the distal (down in my calf) end, I felt some heat, and indeed, when I said the word they stopped the procedure and added more numbing solution, then finished up.  The heat was only mild discomfort, and it stopped just a second or two after I told them, so it wasn’t a big deal, but it was slightly alarming.

Then the catheter was removed, and Angela held pressure on the opening where it had been inserted.  She cleaned me up and removed the drapes, which were held to my legs with adhesive.  The removal of the adhesive from my hairy legs was easily the most painful part of the whole thing.

I return for an ultrasound on Thursday and to do my right leg on Friday, then next week another ultrasound, doing the small veins in my calves, and another ultrasound after that.  The ultrasounds are to ensure that a thrombosis (blood clot) hasn’t formed.  It’s a remote possibility, but the fact that it’s possible means that catching it early by ultrasound is good practice.

I will be far less nervous going in for my second leg.  As far as surgical procedures go, this one was a cake walk.  I do give credit to a fabulous doctor and her reassuring manner for a good part of that.

Below are photographs of my leg after the procedure, the swelling is from the numbing solution.

Now time will tell if this procedure helps my Restless Legs Syndrome, the reason I had it done.  The aftercare is simple, walk a lot, don’t run, and use my thigh high compression stockings for a week.

Immediately following the procedure

I have to wear the thigh high compression stocking until tomorrow afternoon, then during the day, every day for 7 days