A Different Kind of Labor Day

In honor of it being Labor Day I thought it would be appropriate to begin this post with a story of a different kind of labor day – the day Liam was born.  I mentioned my nephew Liam in “Forever Twirling” and gave twitter-length description of him, but I want to tell you more.  You’ll want to know more too – he’s bound for greatness after all. 

He was born on my parents’ 33^rd wedding anniversary back in December 2011.  As we waited anxiously in the waiting room on the labor and delivery floor to hear of his arrival I contemplated on how I would bond with this new little guy.  My nephew Jeremiah, who’s now two (going on five – his words not mine) and I spend an inordinate amount of time together.  On average we’re together at least full two days a week while his mommy gets much needed rest to recover from working nights in an emergency room.  Although sometimes, a lot of times it’s tiring (he’s a mover and a shaker now) I really do treasure my auntie time with him.  I know it’s blessing that I get to spend so much time with this little guy.  Also the fact that I need to soak all the time I have left with him while I live locally is not lost on me.  That being said I wondered if I would feel as close to Liam as I do Jeremiah.  I know that’s sort of a “Debby Downer” thought, but it’s honest.

When my brother Andrew came out to the waiting room and told us that all 8 pounds 12 ounces of Liam had arrived I expected him to me oozing with that “new father glow”.   He went onto say that Erica made it safely through the c-section procedure (Liam was sitting, literately staging a sit-in in her womb and would not move to get in birthing position) so I thought that we were home free.  Although I had expected Andrew to be a bit giddier as he relayed the news of his new addition his bittersweet expression was explained in his next sentence.  He went onto say that Liam’s feet mirrored mine when I was born, and that he wasn’t moving his legs much.  In his basinet in the nursery you saw a full head of dark hair like daddy, a sweet face like his mama, and his aunt’s bilateral club feet.

            The next few days were spent waiting on the neonatologist to determine what the next step would be.  When they were checking him out the day after he was born they discovered that both his left and right femurs were broken (he got a leg up on me – I was born with only one broken femur).  It also became clear that his knees and hips were out of sorts so to speak.  He looked a lot like a butterflied turkey: hips dislocated out to the side and knees bent.  In hindsight looking at Liam’s sit-in all of us are so happy that his parents made the choice a week before his birth to schedule the c-section.   If he was delivered traditionally his knees and hips could pose more of a risk to both baby and mom.  Due to his unique physique from the waist down his femurs weren’t cast normally.  Instead he had a crazy looking harness on that went over his shoulders, around his back, and kept his legs pretty stabilized.  That harness although effectively helped his bones heal in a few weeks made life pretty miserable for Liam and his parents.

            Getting this little guy home was an adventure that nobody knew how would end.  My parents having been through almost the exact same scenario with me as a newborn, thought that he could just ride home in a regular car seat.  However the harness didn’t allow Liam to bend at the waist, thus he couldn’t sit.  The hospital mandated that he be transported in an approved car seat or “car bed”.  The next question we all asked “What the heck is a car bed?  And where can we get one?”  Apparently it’s like a mini hospital bed that actually straps into your car.  Finding a place to purchase one, getting insurance to cover the excessive cost, and obtaining one on a Sunday afternoon is pretty much impossible.  The next option was to leave Liam at the hospital until they could figure another way to get him home.  For new parents – physically, emotionally, spiritually exhausted parents that was not an option.  How could they handle leaving their new baby behind? 

            Andrew put a desperate plea for prayer out on facebook.  Since Liam’s birth (and the many weeks following) I have never seen my brother so physically and emotionally fragile.  Those requests for prayer are what kept Andrew and Erica going – we know that, but that’s a different topic.  Anyways people were made aware of the situation and many offered suggestions.  One of Andrew’s friends that he graduated high school with is an EMT and volunteers at our local fire department saw the plea and had an idea.  He used his connections to secure an infant sized emergency medical transport backboard.  The hospital gave the “ok” and by that evening all of them were home in their own house.

            Although I don’t personally know, I’ve had a backstage pass of watching both my siblings become parents for the first time.  It’s overwhelming.  Whether your child is born and everything works the way it should, or there’s physical challenges it’s completely life altering.   There isn’t any sleep, and when you have time for sleep you can’t because you’re worried if you and your child will survive this learning curve.  The next few weeks were rough, there’s no sugar coating that, but they made it through.  It was a tremendous time of growth for us all.  There were several times that I struggled in a way that no one else really understood.  Someday I’ll write about it and perhaps there will be someone else who was born with a physical disability, and had a family member born with a similar one that will get it.

In early February Liam was finally rid of the harness, femurs all healed.  When Liam was born my orthopedic doctor was out of the country, but his practice is hooked into the hospital that Liam was born at, so he became a patient there. Let me just say, I have the best ortho doc in the world.  It’s not bias, it’s fact.  Since becoming my doctor when I was just a day old he’s gone onto becoming the head of orthopedics at one of the state’s leading teaching hospitals.  Once he was back in the country he snatched up Liam’s file.  We don’t have a whole lot of information to go on when it comes to about what condition Liam and I both have, it’s really bits and pieces of various things.  The fact that Liam has the same doctor that has been working with me since day one is a huge deal, HUGE.

There’s a lot more to Liam’s story as I’m sure you can imagine, however this post is already getting to be pretty long.  Let me wrap this up by expelling the notion that I once had about having trouble bonding with Mr. Liam.  He and I are literately two of a kind.  No one ever wishes a physical handicap on someone, and I’m certainly not rejoicing in the fact that he currently is following in my footsteps (horrible pun not intended.  Ok maybe a little bit…) I am simply trying to look at this with my sometimes annoyingly present optimism.  Everything that is vital to life works, and he’s a lot better off than some babies.  I look at his situation with the same mindset that I see my own with – it is what it is, and it’s not going to stop us from living our lives.  Liam’s future is unknown.  We still hold the hope that we’ll see him walking, but if that’s not in the cards so be it.  He’s eight months old and has already made an impact on so many.  I mean the kid has a Facebook group dedicated to him with over 100 members :-p

Liam stating the fact that he is fearfully and wonderfully made- photo by God Given Photography

Dominoes and Hills

The award for Most Inconsistent Blogger goes to… Emily!  If there were a statuette to recognize the laziness I have shown towards The Wheel Deal I imagine it would be a golden fist with a thumb pointing downward.  Unfortunately it has been weeks since I’ve even thought about The WD, my mind preoccupied with not one, not two, but three life changes that are about to occur (I’ll get to that after I grovel for your forgiveness).  However this past week I haven’t been able to shake this internal demand for me to pay some attention to The WD.  So – here I am, I might as well tell you all where my wheels have been and where they’ll be going.

Every big change is really just a domino in a giant maze of other dominos – I like to think of that maze as life.  For many years it seemed that the dominos were placed almost a whole length apart, and much time had to pass in order for the next one to be knocked over.  However lately the dominos seem to be placed quite close together and things are changing quickly in my a-mazing life. 

Domino #1: In June while visiting my best friend turned boyfriend (as of a year ago) who lives in Nashville we met up with a photographer friend of ours who was going to take couples photos of us.  Not being the most photogenic person I wasn’t real enthused about a photo shoot, but he kept reminding me that someday I’d be glad to have the pictures.  Since he tends to be right about that sort of thing, and our friend takes beautiful pictures I put my happy face on.

*Side Note: never thought a whole lot about couples posing for pictures when one is always sitting.  The height difference is sometimes just awkward when it comes to taking pictures.  

Anyone else feel that way? 

The above mentioned issue was starting to get to me a little, add the afternoon sun on an already hot summer’s day in Nashville you have the recipe for a slightly cranky Emily.  I wanted the pictures to look good, and although I really was happy to be there I just couldn’t get the weird height thing out of the back of my mind.  I started to stare off into space a bit, perhaps I was trying to think of different poses, or maybe I just shut down a little.  Something caught my eye and I looked down suddenly to find my boyfriend on one knee holding a sparkly ring.  My “yes” was immediate (we had discussed marriage at length many times, and it was no secret both of us that it was in our near future – I just didn’t know when it was going to be “official”).  To no one’s surprise the next several shots were the best of the night.  We, I stopped thinking about looking “happy” and simply was.  I should make a mental note to remember that on my wedding day – I’m sure I’ll need to remind myself to not over think pictures then too.

Domino #2: Figuring out how to take the long distance out of our long distance relationship has been a goal of ours for the last year, now we have a much needed timeline for that.  We know by the end of next spring that we will not only be living in the same city, but we will be together as husband and wife forever.  While in Nashville post-engagement, my now fiancé and I looked at an apartment.  This was a first for both of us – me: looking at a grown-up place to live, my fiancé: looking at apartments and factoring in a wife and a wheelchair.  We knew that I would be the one to make the geographical move so we could ditch the miles between us.  Now having a definite timeline we’re not only planning a wedding, but a big move as well.  That being said – wedding planning for a wheelchair bride and a groom currently 800 miles away… stay tuned to hear how that goes.

Domino #3: This should be called “The domino I desperately need to tip over – like now”.  I am faced with the same problem most post-grad young adult is – finding a job in a rickety economy.  Unlike a lot of 23 year olds I have no “official” work experience.  Typical teenager jobs in retail or food service weren’t really an option for me, and I wanted to make sure I could get to a job independently (basically I needed a car – no easy feat for a driver in a chair).  However I have a van now (yippee!  I’ll post pictures of my cool semi-high tech van that I affectionately call Albert), a degree, and the skills needed to do all sorts of jobs. 

Never did I think that finding a job would be so difficult, or that my chair would actually play a role (no pun intended) in my job search, yet it is and it does.  As a student I didn’t let my chair impact a lot of my choices.  School work is done for the most part sitting down, and when I worked in various elementary schools the environment was pretty easy to navigate.  However as I contemplate places of employment I find myself having to think how my seated posture will work with that.  For example the other day I looked at jobs at the post office.  The description for the clerk at the window seemed to be a great fit for me, except for the fact that I can’t even see over the counter.  It will certainly be interesting to see where I end up employed.  Hopefully that happens soon!

So here I am, on the brink of extreme change.  It’s like being at the top of a hill on a paved road in the middle of nowhere – you’re not rolling yet but once you start you’ll get that feeling in the pit of your stomach.  It can only be described as partly terrified, a little shaky, adrenaline fueled thrill, but mostly sheer joy.   Last year I couldn’t imagine this is where I’m at, and I’m sure next year I will think the same thing.  I have to ask my older, wiser readers: does the road of life ever flatten out, or are you constantly going up and down hills? 

Forever Twirling

I know this isn’t a typical “I haven’t blogged in almost a year” entry.  There's a lot to fill you all in on: engagements, nephews, moves - but that will have to wait.  However sometimes entries write themselves and welcome back posts must be postponed. 

            My alarm went off Sunday morning and I was greeted with sun streaming through my window blinds and birds chirping outside.  It sounds extremely cliché but honestly that’s how my day actually started – full of symbols of life.  As usual I prolonged my laying in bed (although this morning I actually felt “awake”) and mentally went through my closet deciding what I would wear to church.  I made my way to the kitchen to put my mandatory pot of coffee on.  Taking time to finish up the half cup left in the pot I sat in the middle of the kitchen and stared at the floor watching the sun shadows dance.  Something struck me this morning – everything seemed beautiful, like I was in a dream or had HD glasses on.  I put on my mentally pre-planned outfit of a skirt and t-shirt, nothing particularly different than my daily wear really.

            Out the door on time I went to my van to get in and head to church.  Knowing what sort of mindset I was in I wasn’t surprised that I took my time getting in, leaving the side door of my van open and the breeze blow in until the very last second.  As I stood up to get into the driver’s seat the wind blew my skirt a bit.  Just like before when I captivated earlier by the shadows dancing I couldn’t stop watching the wind play with the hem of my skirt.  My mind instantly envisioned myself twirling, leaping, dancing, and spinning in a bright white, sun-filled room.  I knew what I was seeing – it was a sneak peek of myself in heaven getting my dance on. 

            During my drive to church I was in a happy dreamy state.  I was almost thankful that the car I was stuck behind was driving a good 10 mph under the speed limit; I was enjoying seeing the scenery with my “high-def dream glasses”.  Once at church I sidled in next to my sister-in-law and 8 month old nephew Liam.  I am going to have to tell you more about Liam someday but for now you just need to know some basic facts: that sweet little boy lights up the room with his smile and shares his Aunt Emily’s orthopedic challenges.  Still thinking about twirling in heaven I looked at Liam and had similar visions – him running, jumping, tumbling and doing flips.  As I played with Liam throughout the church service I prayed that no matter what his future held (we don’t know exactly how similar his genetic disability is to mine) he would never forget what I was being reminded of that morning – that in heaven we’ll have perfect legs and feet.

            I couldn’t help but feel an overwhelming sense of gratefulness that I can look forward to an eternity with perfectly functioning legs.  I’m not going to lie, I have no idea what the sermon was actually about (I was really lost in my own thought process).  However at the end of the message the worship team played that classic Mercy Me song “I can Only Imagine”.  I’ve heard that song a million times on the radio and usually just ignore it, but when I hear it live it gets me (especially when my brother plays it – since becoming Liam’s daddy I think of him and that song totally differently).  All hope of keeping my emotions in check when out the window when the lyrics of the song connected with my visions that morning.   “Surrounded by Your glory, what will my heart feel?  Will I dance for you Jesus or in awe of you be still?”  Totally and completely overwhelmed by what I have to look forward to I cried tears of gratitude.

Rarely do I really think about how my movements are hindered by my lack of muscle control in my legs, but mornings like Sunday I just can’t get away from it.  There have been times when those thoughts have made me feel the exact opposite; sad, depressed, and inadequate.  Part of the reason I am writing the experience of this past Sunday down is because I want to remember it.  I need to remember that I have all of eternity to twirl, do cartwheels, jump, and dance.  Eternity is a whole lot longer than my lifetime here on earth.  Any thought of heaven automatically reminds me of the tremendous love God has for me, and the fact that He made me to His perfect specifications.  The way I am, the way Liam is, the way you are is exactly how we were thoughtfully put together.

            The other reason I wanted to write this down was to share it with you.  I try not to get over preachy or religious in this blog because I want to be as relatable as possible.  However my relationship with Christ is a huge part of who I am, it’s my very foundation, and it has had an immeasurable impact on how I view my disability.  It would be so easy to take the fact that the only movement my skirt makes it from the wind and simply be sad about it.  To wallow in the fact that I won’t ever know the simple girlish pleasure of twirling.  But what good would that do?  I want to share the hope and promise of an eternity as a perfect being – completely whole physically, emotionally, and spiritually.  Here’s to spending forever twirling : )

"I'm thankful for..."

            Everyone is seated around the table; the air is filled with a mix of traditional Thanksgiving dishes and the aroma of various family members’ perfume and cologne.  The room seems impossibly warm yet no one complains, for it’s difficult to decipher between the actual physical heat and the warm fuzzies that being with family provides.  My grandfather offers up a heartfelt prayer of gratitude for all that the Lord has blessed us with, the prayer is closed with the joining of everyone’s voices singing of the “Doxology”.  The passing of plates starts, a guessing game of “is this my fork, my neighbor’s fork, or the turkey plate’s fork?” begins – it seems that the quiet moments of the beginning of the meal are long gone.  Eventually someone starts my favorite part of the day, the actual giving of thanks and the chaos leaves as quickly as it appeared.  “I’m thankful for…”

            Each year I try to come up with a new answer, something that is distinctly of the year (for example this year I could say something about graduating).  However what I am most thankful for does not come and go each year.  It sounds utterly cliché to say that it’s my family and friends that truly fill me with the Thanksgiving spirit, but it’s true.  The list of reasons why is never ending and always expanding, yet I think that the aspects of these relationships that I appreciate most are often the ones that I don’t notice every day.  Near the top of that list of reasons why is the mere fact that they cause me to forget about the most obvious part of my life.  Even though the way I do things is almost entirely different than the vast majority of people I know rarely do I realize what causes me to have to make those adaptations.  Instances like the other day illustrate this point: my mom asked me a question about jump ropes and I told her that I had no clue about the answer.  “How could you not know?!?” she asked, I simply pointed to myself, an “Oh” was uttered as she answered her own question.  Experiences like my father bumping my chair up and down hundreds of steps at Watkins Glenn State Park without thinking twice about it make me realize how sacrifices are sometimes made so I can feel “normal”. 

            There are times when it’s completely different circumstances that cause me to feel saturated with gratitude.  Like the time almost exactly three years ago when I flew back to college with a fellow classmate and dear friend when all the parts besides for the frame of my wheelchair were left in Syracuse, while I was in Nashville.  Although that morning was excruciatingly long due to having to wait around for the airline to determine where exactly the pieces to my chair were, I was never alone.  The entire existence the Wheel Deal is due to the prodding of my best friend, and the resurrection of it is the product of some of his very late night pep talks.  I feel quite ordinary most of the time and forget that I’m different.  Even times when I am cognizant of my uniqueness the thought that others might actually want to read about those differences doesn’t usually cross my mind.  Sometimes you just need to be reminded not only of the fact that you are special, but also that you can share what makes you that way.  I am undoubtedly grateful that I have friends and family that do that.

            As I continue to grow into adulthood it becomes more apparent that thanksgiving isn’t something that happens on the last Thursday of November each year, it should be an everyday practice.  With age comes the realization that reality doesn’t always play nice.  It’s easy to feel like you’re being beat up by the punches that life sometimes throws at you.  However we’re not called to be victims of circumstance or “bad luck”.  With a mixture of hard work and having the right attitude your outlook changes and you’re able to bob and weave when those punches come your way.  The feeling of life taking too much from you can be combated by giving thanks for even the little things.  When I can’t get somewhere because of my chair it would be easy to get discouraged by those circumstances, but what good would that do?  Instead I think about all the things that I can do, and how there are more opportunities than ever for people who are disabled.  When I can feel the awkward stares, or when people talk to others I’m with but not to me because of my chair it’s sometimes difficult not get a little agitated by their ignorance.  I’m forever thankful that I can surround myself with people that I can joke with about being disabled cuts that mindset of being annoyed with society off.  It seems almost sad that there is only one day a year where the practice of giving thanks is given top billing.  You  don’t need to have a feast every day, and it would be impossible for New York City to shut down the streets used for the Macy’s parade on a more than yearly basis – yet that doesn’t mean that Thanksgiving only has to happen once a year.  Also a byproduct of thanksgiving is that feeling of warmth I described earlier.  I’m positive stems from counting of one’s blessings.  I know that because my hands are freezing right now and I’m sure the ground outside is dusted with frost, yet I feel immeasurably warm inside.  

emBracing Curiosity

“Emmy!  Emmy!  Emmy! Emmy!”  That is rapidly becoming one of my very favorite things to hear, which is saying something because I typically detest being called “Emmy”.  However when it’s coming out of the mouth of a 28 pound, 31 inch tall blonde haired boy it’s an entirely different story.  My nephew Jeremiah has me so tightly wrapped around his finger (and I’m sure he knows it, he’s brilliant after all) that he could call me practically anything and I’d love it.  After the yelling of names and running towards each other we end up hand to foot, his hands braced against the bottoms of my feet.  As he pulls my feet apart (I say “he” because he tries, but really I do the heavy lifting) to clear room on my chair to sit with me I pull him up sit on my lap.  After I force him to give me a hug he settles in on my lap between my braces and we’re off.  Jer has been sitting with me in my chair since the day he was born, and I always thought that as he grew up into a little person he wouldn’t want to, or he wouldn’t sit still as I turn the wheels.  However it’s just the opposite, it isn’t until I stop moving that he gets antsy, most likely thinking that if he wiggles around enough the chair will magically start to move again.

As one would anticipate the more Jer develops the more he discovers about the world he lives in, thus making him more curious about his aunt who’s different than everybody.  I tend to be fairly oblivious to how people perceive my chair, but I’m trying to be more conscious about that – partly because it’s just plain interesting to know what others think of you and why they think it.  The first time I remember my disability causing Jer to think is when he was sitting on my lap while I had my braces on.  I wear full length (foot to upper thigh) braces with lockable knee joints.  My braces are like weirdly shaped metal legs – not super comfy to lean against.  One day Jer climbed up on my lap, settled in his usual place and suddenly got this very disgusted look on his face.  He hit my brace, squawked something in baby gibberish that I’m sure meant, “Dude Auntie Em what’s with the hard legs?!?”, and then he grabbed the end of my pant leg and tried to inspect what was making my lap feel different.  The tailoring of my pants didn’t allow him to inspect my braces much though, which frustrated him for about half of a millisecond and then life moved on.

A few days later we were at my house and I went into my room to grab something.  As I’ve come to expect Jer followed after me to inspect everything he could get his hands on.  There on my floor laid my braces and I saw a teachable moment.  I encouraged him to manipulate them, pull the Velcro straps, slide the knee locks, knock on the hard fiberglass backs.  After he was done inspecting them I put one on over my non-braced, pajama clad leg so he could see.  He stared with wide eyes as he watched my normal legs put a different costume on.  Once braced I pulled him up on my lap like we normally would so he could see what he feels when he sits on my lap. 

Knowing that the chances of him remembering all the discoveries he made that afternoon were slim I still felt it important to encourage him to make those connections.  I’ve never had the opportunity to be the sole person that someone bases their opinion about people in wheelchairs on.  Spending so much time with Jer has really spurred me to be cognizant of how the perceptions of people are crafted.  My hope is that he grows up with a healthy curiosity about not only what makes people different, but about his entire world.  I want him to not only wonder and question, but be mindful enough to try and understand that which he doesn’t know.  What a different place the world would be if as much as people questioned, they allowed themselves to learn and be taught with an attitude of understanding and not simply knowing.