What Goes Around (Might) Come Around, Again...

Clearly, I find myself writing whenever I have a need to get something out.  Now is one of those times.  As I mentioned in a previous post, one of our daughters, who already has SPD, was diagnosed with ADHD and mild generalized anxiety disorder last Spring.  We have been working with her, along with specialists and her school, to help her figure out how to navigate life in the best way she can.  She is a great kid who tries really hard, and we are so proud of her.

This past June, our area was hit with a storm that has been named "Derecho 2012."  It was a horrible early summer storm that, as many of you know, converged on our region from what seemed to be  out of nowhere (or at least, no one expected it to be as awful as it was), comprised of lots of weather factors that rarely find themselves together at the same time, in the same place.  It was a sort of "Perfect Storm," if you will.

 This is a radar image of the storm - we were in the bulls-eye...

For our family, this meant quite a bit of devastation.  We went from a leisurely evening at the pool with friends on a Friday to running to the car as the winds and lightning picked up.  We arrived home and did little things to prepare for what seemed to be a typical summer storm - bringing in light chairs from the front porch, taking down our patio umbrella, etc.  We got the girls settled into their beds, hoping that they would fall soundly asleep after exhausting themselves at the pool for several hours that evening, before the storm hit.

My husband and I joked about sitting out front to watch the storm come in - I am absolutely fascinated by weather and truly love a good summer storm, but thought better of it and started to get settled in ourselves.  We gathered our flash lights - just in case, and were planning to ride it out in our bedroom, watching television.

The wind picked up.  It sounded like a freight train whistling though.  Outside our windows, we saw the outlines of trees bending sideways through the frequent lightning.  Normally, I'm not particularly phased by this kind of thing, but even I started to get nervous.  I could hear the girls still stirring in their bedrooms.

Then, the power went out.  That jolted both girls out of their beds, and we quickly flipped on our flash lights and gathered them in the hallway upstairs.  We decided that it would be best for us to be downstairs, since I am in a wheelchair and getting our generator up and running for my elevator wasn't really an option until the storm passed.  My husband and I were trying to act nonchalant about everything, so as not to worry the girls more than we needed to.

Everyone was gathered at the top of our staircase and was beginning to make our way downstairs when we heard a loud crack, a thud, and our whole house shifted.  We didn't know what had happened, but my husband and I looked at each other and just knew.  We needed to get to our basement, and FAST.

We basically sprinted downstairs.  The girls ran ahead of us, following our instructions to the letter (something that, at 6 and 3 1/2 years old, they rarely do).  My husband swiftly scooped me up out of my chair and we ran to join the girls downstairs.

We turned on a movie on my computer for the girls.  Luckly, the sounds of the storm were muffled downstairs, and our small windows didn't allow us a view of all the lightning.  They hunkered down and were quickly distracted by the show - I have never been so thankful in my life that they are little Disney movie junkies!

When things eventually quieted down to downpour, my husband grabbed my chair from upstairs and brought it to the foyer, and then carried me upstairs to meet it.  When we opened the front door to survey the situation, we gasped.  There was a huge tree covering our front walkway.  As it had fallen from the direction of our garage, we then went to the garage and opened the door.  Our car was crushed.  The tree had hit one of daughter's room in two places.

This is the same daughter who was recently diagnosed with mild anxiety.

She had been less than a minute from being in there when it fell.

Our house, post storm and pre-clean-up

Our daughter's room, hit through two dormer windows

 Our car, which broke the tree's fall and likely saved us from a lot more damage

The hole in our daughter's roof - what kid wouldn't be a little freaked out by that? ;)

The girls, snuggled together and sleeping in our basement on the Aerobed

The next days, weeks, and months have been spent with putting our house back together.  Our power was out for seven days.  Her room had a hole in it, covered by a tarp, until 3 weeks ago.  With large branches everywhere, our back yard, including the girls' swing set and play house, sustained significant damage.  We had a second flood that came into our other daughter's room through an undiscovered vulnerable area on our roof during another storm that followed a couple weeks after Derecho, which flooded our dining room.  As it often goes with insurance companies, it took our family months to complete our repairs, and we still wait for the final sign-off on everything so that we can be reimbursed.

I write this not because I am looking for sympathy.  This whole situation sucked, to be certain, but it happens to people in every corner of the world, every day.  I write this because of my daughter.  What was "mild anxiety" for her has developed into something that resembles a real phobia of weather that she has been dealing with all summer.  This storm, like it or not, became an unavoidable daily conversation and experience for all of us.  That, combined with the long wait to have things repaired, has taken its toll. 

For her, every cloud, every breeze, seems like it's going to be Derecho all over again.  She worries every day about what the weather will be like.  We jump from A to Mach-2 at the sight of a rain cloud, and discussion about tornadoes and trees falling are as normal a conversation around our house these days as "What would you like for breakfast?"

It is intensely heartbreaking for us as parents, as well as incredibly frustrating.  What you say in these discussions can just as easily be what you absolutely, under all circumstances, shouldn't.  What you don't say is actually what you should.  It's confusing and has required us to really think before we speak.  She relies on us to be honest, but not too honest.  It is beyond tricky.

We are trying so hard to help her with this.  We are talking to and working with professionals. We are reading books like this, and this.  We are working with her to expose her gradually to that which frightens her.  Her psychologist thinks it's a post-traumatic stress disorder (PTSD) that, if we address it, she will overcome (or at the very least, learn to manage very effectively).  It's not a true "phobia" yet, which we are trying to avoid.  Hopefully, all this will help.

The reason I was inspired to write this evening, however, is because our area is now keeping a watchful eye on Hurricane Sandy.  It is sounding more and more likely that something significant will happen here, but even if it doesn't, I worry for my daughter.  She is a smart girl who pays close attention to that which worries her, and even a casual conversation in the lunch room between some other grade-school kids will truly stress her out.

Our daughter as her usual happy-go-lucky self, playing Zimmbos with Mommy 
the morning before the storm hit...

Maybe (HOPEFULLY), Sandy will head elsewhere.  But my husband and I are quietly getting ready, just in case.  We know that our "storm prep" goes far beyond gathering batteries and canned goods.  Helping our daughters through whatever might come is what's on our family's radar.  We had a conversation this evening about filling up gas cans for the generator, inventorying rain coats, getting the movies ready for the basement where, if any storm decides to make its way here, we are sure at least one of our daughters will be wanting to hole herself up until it passes.  Lots of cuddles and reassurance will be readily available, too. 

She is such an amazing kid (I know I'm biased, but both of our girls are!).  She works and fights so hard to be who she is, and deserves to be cut just a small break...

I feel like the big exam is coming up and we haven't had time to properly study for it - or even read the Cliff's Notes - before D-Day.  I would do literally anything to keep her from experiencing this fear before we have helped her learn more coping skills to manage it.

Apparently, I have a lot of worries these days, too.  But I can't help it - I'm a mom.  And that's why I write tonight.


Menu - Week of 8/27

Summer's winding down and we are gearing up for school in our casa!  C heads to First Grade next Monday, while M has a couple more weeks to chill before starting the 3-Day Three's at her preschool.  I am still hammering out the girls' Fall extra-curriculars, which will obviously factor into how much time I have to cook.  I do try hard to put a home-cooked meal on the table 3 days a week (and then we plug in the usual well-chosen convenience and faster options dishes, like pre-marinated meats, scrambled eggs, pastas, etc.).  My slow cooker, which has been collecting dust in a cabinet since May, is about to see the light of day again!  Here's what I am thinking for next week: 

Monday:  Chicken Roll-ups with Goat Cheese and Arugula with a light salad

This dish is only five ingredients, but it takes a bit longer to prep.  Monday is a half day of school for C, which means I will have a bit more time to pull everything together.

Tuesday:  Crockpot Honey Sesame Chicken with steamed brown rice and veggies

I'm thinking slow cooker for Tuesday since we have karate for C and gymnastics for M!  So nice to come home to the work already done for you!

Wednesday:  Easy Garlic Chicken with steamed baby carrots and potatoes

This looks like it will pull together quickly, but we will be packing for a family trip to a wedding in Lexington, KY over the weekend, so it may fall by the wayside.  We shall see!

Thanks to Pinterest for all the new, fabulous ideas for quick dinners!


Toy Clean-Up: Attempting to Turn a Nightmare into a Dream :)

I hate toys.

Well, let me clarify:  I hate storing them, sorting them, getting my kids to clean them up.  It seems the bigger the girls get, the smaller the toys get.  Our house is a world of Polly Pockets and all their little tiny rubber clothes, Squinkies (which are just as tiny and rubbery), small plastic animals and Disney princesses, and most recently, Legos have been added to the fray.  We've always had the big Duplo ones and MegaBlox, which the girls have loved, but we have moved into the teensy-weensy kind that are oh-so-pleasant to step on/clean up.  Her new favorite is this - good for you, Lego, for coming up with a "girly" version!

I shouldn't complain - after all, all these tiny little toys are actually great therapy tools for C, and M gets the added benefits of developing all these fine motor skills without us having to fork over thousands of dollars to the OT (heehee).  Getting Polly dressed requires quite a bit of pinching and tugging - all the while working out their little fingers, and locking those little Legos into place is great for working on fine motor skills and proprioception.  Yes, this is what happens to your brain when your child has SPD (or any of the other stuff we are dealing with) - you start to look at EVERYTHING as a potential therapeutic activity.

But storing all this crap stuff is another ball of wax entirely.  We have bins and shelves in our basement.  We also have clear plastic shoe boxes that are labeled with photos of what goes inside on our first and second floors.  We have baskets and book cases upstairs, too.  No matter what the little stuff never really gets sorted, and ends up dumped into one of these with a lid.  Out of sight, for sure, but not so much organized!

We have known for awhile that, with her sensory and attentional issues, C literally has trouble seeing "the forest for the trees." She can't visually sort things and gets very easily overwhelmed at the prospect of finding her stuff, or strategizing how to get it put away when it's time to clean up.  Breaking this process down into singular tasks is the best thing for her - you can't just tell her to go clean up the sun room; you have to tell her to go pick up the Pollys, then when that's done, tell her to go pick up the princesses, and so on.  That's why figuring out a system that works for her AND the rest of the family is so crucial.

The Lego situation, in particular, has spurred me to see if I could find something even better, even if it's just for the small stuff.  My aunt used to have this awesome drawstring bag for hers.  While my cousins or we played, the bag laid flat, like a play mat.  When it was time to clean up, all we had to do was shove the Legos onto the mat and pull the drawstring.  I think she made the bag herself or something.  If I tried to do that, it would be stapled and glued together.

Thank goodness for Google.  Look what I found on one of my new favorite websites, The Daily Grommet:

Absolutely BRILLIANT.


Wow.  It has been quite awhile since I posted.  Almost a year, in fact.  Life has obviously been busy.  The school year was filled with car pools, activities, and play dates for both girls.  Summer transitioned to camp, more activities, swim team, and more play.  I feel at times like I am driving a shuttle bus! 

OT graduation day - May 2012

We've also been on quite a ride with C, especially recently.  She "graduated" from OT in May (with an extensive home program in hand, as well as the idea that we will pop in for "tune-ups" if/when life throws new sensory-motor challenges her way), and was also evaluated by a psychologist to look at some lingering attentional issues we continue to struggle with in school.  In addition to confirming that C is a very bright, personable, kind, and curious little girl, we also got the additional diagnosis of ADHD - both inattentive and hyperactive types, as well as some mild anxiety, in May. 

None of this came as a surprise to us - I think both S and I have always suspected that there was more to what was going on with C than her Sensory Processing Disorder diagnosis, and read long ago that this is a common co-morbidity with SPD, ADHD, and anxiety issues - but it's never fun to "officially" realize that your child is facing yet another challenge in her young life.  We've taken time to work with her school to come up with a formal plan for the upcoming school year (they were amazing at accommodating and working with her in Kindergarten, but it was never written in a formal fashion), as well as research our options to help better support her (ie - social skills groups, learning about medications should we decide to go that route, etc.).  I've spent time talking to other moms and older students who have similar diagnoses to learn more about the implications of these additional challenges, which has been great. 

We aren't sure where all of this is headed yet, but in some ways, having yet another "name" for what we've kind of known all along gives us another stepping stone to point our family and child in the right direction, and that helps!


A Letter to My Thirteen-Year-Old Self, Twenty-Two Years Later...

September 28, 1989

Dear Me,

You will get through this.

You probably don't believe me right now.  You are thirteen years old, in a bed in the PICU, looking around and hearing sounds as you slip into and out of consciousness, wondering where you are and how you got here.  You ask your mom, "Why can't I feel my legs?" and hear her say to you, "Honey, I don't know," not realizing that her response is less about her own misunderstanding of your question and more about the fact that she doesn't quite know how to tell you the truth just yet.  You don't realize the challenges that you are about to face in the days, weeks, months, and years that will come, and so you sleep.  You need your rest and your energy to shore up for what's ahead of you.

And then you wake up.  The following couple of weeks will be ones of chaos, full of people trying to figure out what went wrong and how to fix it.  Your friends and family will be the best distraction.  They will cheer you up and make you laugh at a time when, in retrospect, you will accept was the most mournful state of your young life.  They are your gift right now as the next steps are planned out for you, and they are the reason that you have hope that everything will be okay.

The months of rehab in a place that's far away from your home, your friends, and your family are hard, but you will do what you can to get through and move on.  You will meet other patients who are in some ways just like you, and in other ways, worlds apart.  Some are hopeful, and some are not.  Some are convinced that things will someday go back to the way they were, and some who accept that this may be their new reality.  Learn from them - their stories and journeys may be vastly different from the one you have experienced, or what you believe will be your own fate, but all of you have a common bond that people outside of your little club can never possibly comprehend.  

In addition to your family, you will also meet doctors, nurses, and therapists who help you to see that your life will go on.  It may look like nothing you had ever imagined for yourself in your first years here on earth, but I promise you, it will be just as good.  Trust them - they know what they are talking about.  Some will even become your friends and mentors and will see you through, well beyond this moment and into a time when together you can celebrate how far you've come.

And then there's the outside world.  You will leave the safe bubble that is rehab and emerge into a new place that, on the surface, looks a great deal like the one you left behind - and yet, completely different.  What will frustrate you is that it seems like you are the only one who sees the differences, because they are subtle.  It will be a world full of obstacles, both physical and emotional.  There will be some that the world places in front of you by way of stairs into buildings with no ramp in site, or a bathroom stall that's just a bit too tight.  Some very well-meaning people will tell you, "Oh, I'll just help you up the stairs or into that bathroom," but it's not the same.  There will be people - even those who love you the most -  who place expectations on you to be the person you were before, even though it's impossible.  They may say, "I know you will walk again," but their wishes for you are not as strong as what reality may have in store for you.  And there will be the thoughts that come from within, saying that this isn't the way things should be, and if they aren't the way they should be, then why bother?  

Before you listen to all those other voices, stop and think.  Those people who are pushing you to do things you know you can't do are doing it because they too are grieving your loss right along with you.  And those thoughts that you are mulling when you can't fall asleep at night?  While they are valid, they are by no means a reason to give up. 

There will always be times when life is tough as you go through the growing pains that come with any change.  These growing pains hurt, both physically and emotionally.  You may think that if you pretend that nothing's different, or if you glue a smile to your face, it will mean that all of it will go away.  But don't act like it doesn't exist, because this will only get you so far - believe me.  Instead, trust that the people with whom you choose to connect are going to understand.  Those who can't handle it, won't.  Those who can will become your safety net as you navigate this uncharted territory, and that safety net will grow even wider as time goes by.  

You may have always had a plan of how things were supposed to be.  This plan has changed, to be certain.  But you can still do all the things you ever wanted to do, just in you own way.…in your own time.  You'll put on that cute dress and go to those high school dances.  You may just have to dance a bit differently.  You'll learn - and LOVE - to drive, and all the freedom that comes with it.  You'll just do it with hand controls in a car that has a bit more room for your chair.  You will head off to college.  It may not be at a place that has the most gorgeous, historical 200-year-old buildings, with all those beautiful staircases and tricky architecture, but it will be accessible to you, and that will make it the best fit for you.  You will graduate, get a job doing what you love, and you will be great at it - despite your chair.  Somewhere in there, you'll meet a boy who adores you, and you will feel the same.  You'll tackle the world together, "like peas and carrots," going together so perfectly.  You will marry him, and together you'll make the world a lot brighter by welcoming two little girls to the mix.  

Your girls will notice your chair, and look right past it.  To them, you are Mommy, and the demands they place on you will not make space for any limitations you may have.  Again, there will be a big period of adjustment with this, but that's okay.  You will do anything for them - even move the world.  They say your child is your mirror, and so you will look at them: compassionate, flexible, happy, and STRONG.  They will be resilient because of you.  They will always - first and foremost - see the good in people because of you.  They will see that, despite the challenges we all face in our daily lives - and in spite of the fact that we can't always control what comes our way - we all have in us the ability to bounce back and reshape things.

Fast-forward, twenty-two years:  

Here you are, at 35 years old.  You did not, for one second, choose to go through the added struggles that your injury handed you, nor would you wish these struggles on your own worst enemy.  But you can, in some way, look at the perspective you have been "gifted" through your challenges as something of value.  You are also wise enough to know that, while things are never really going to be "perfect"  for you, they will usually turn out just fine - and sometimes, they will be unbelievably amazing.

Trust me.  I am a wise woman.  I know these things.



She starts Kindergarten tomorrow...

Some other firsts... bath, pushing up, and smiling.  It seems like just yesterday!

...and I am anxious.  Excited, but anxious.  Amazed, but anxious.  And really, just anxious.  But she is just excited, and so I need to take her lead and put on a brave face because that's what Mommies do.  Wish both of us luck (I think I need it more than her)...


So Perfect Then; Still Perfect Now...


Five years.  When you're little, it seems to take FOREVER for five years to pass.  But when you're a parent, they somehow fly by in the blink of an eye.  We were blessed five years ago today with the arrival of our beautiful daughter, C.  She kept us on our toes that morning with a very dicey delivery, and continues to keep us on our toes today with her feisty free-spiritedness, her questions and views about the world around her, and her infectious (and occasionally, mischievous) smile.  Happy, happy birthday, Sweet Pea.  You made a Mommy and Daddy out of us - what a gift that has turned out to be!