… care close to home

The I-49 corridor between Fayetteville and Bentonville is buzzing with more than just traffic these days; it seems that with every trip North I see new construction along the interstate.  There is everything going up from hotels and restaurants, high rise office complexes and shopping centers.  But there is one project that I catch myself taking a second glance at.  To many it is just a hospital but to me it is going to be home.

The first time I left Elizabeth at the NICU in Little Rock to travel home so that I could spend a night with my family I remember thinking should something happen to Elizabeth I might not make it back before it’s too late.  3.5 hours is not a quick trip and with each exit I passed I had to tell myself to keep driving, everything would be fine.  Thoughts of who did I know that was with the Arkansas State Police should I need an escort in the middle of the night or did I know anyone that owned a plane that could be on standby for me became the center of attention.  No one should have to consider these options when their baby is in the hospital but for me it was my reality.  For months my life revolved around an interstate and little did I know that 14 years later so much of life would become dependent on that 3.5 hour drive.

Not long ago a friend asked me to join her and several other moms from school for lunch.  Excited at the opportunity for some grownup conversation and the idea of washing my hair and actually wearing something that came off of a hanger I asked if I could get back with her after I checked my calendar …. which by the way is not nearly as fun as it sounds!  I flipped through the days and in bold blue letters staring back at me

Elizabeth ~ ACH ~ 11:00am

I called my friend and thanked her for the invitation but I would be in Little Rock that day with Elizabeth.  In true friend fashion she mentioned that I had my dates wrong because I was just there last week.  As I began to explain that was for a different appointment she interrupted me with a question I was sure I didn’t want to know the answer to … how many times have you been to Little Rock this month?  I would have to look back at my calendar, count the days and that could take a few minutes.  Sometimes, more than not I spend 7 hours on the road and only an hour in clinic.

There are the surgeries that keep us in Little Rock for days or weeks with little family and fewer friends.  I befriend the nurses and they become my support system.  Caroline and Alex are passed around the family and bedtime stories and prayers are far too often over the phone.  It  has become a way of life and I don’t allow myself to know anything different.

So when I heard that there were quiet rumors of ACH expanding to Northwest Arkansas I had to talk myself off the ledge more than once from the possibility that Elizabeth could receive care in our hometown.  It was almost overwhelming to consider the benefits of what this could mean for us.  Most mornings we leave at 5am to make a 9am appointment and rely on my amazing mom to come the night before to help with morning drop off and afternoon pickup for Caroline and Alex.  There is just no way to get to Little Rock and back home during school hours.  Traveling alone with Elizabeth has its own set of challenges.  There are 2 feedings that must take place in a 3 hour range so that means stopping at least twice to change out formulas and feeding tubes.  And as much as we would like to say she can make the trip without needing to be changed, that’s not happening!  Have you ever tried to change a 100 pound, 5’5 14 year old in a minivan?  I have maintained we need a reality show, people would never believe how creative I can be!  And since we are on that subject … I have trained myself to do without drinking or eating for 7 plus hours because you can’t leave your special needs daughter in the van while you run into Starbucks to use the restroom and grab a cup of coffee!  So you can now imagine my excitement just thinking about the logistics of driving 15 minutes to see the doctor!  I would say to myself …. I will believe it when I see it

I have a deep spirit for volunteerism.  My careers in life have been due to successful years of volunteering for an organization.  One came right after Elizabeth was born.  Months in the NICU allowed me to educate myself on a non-profit called March of Dimes which played a major role in Elizabeth’s care at ACH.  The more I learned about the organization the more I knew I needed to volunteer and help raise funds so that other families would not have to endure what I did after Elizabeth’s birth.  I reached out to our local chapter just after I brought Elizabeth home and was excited to learn there was a calendar full of events I could choose from.  I chose all of them.  Sharing Elizabeth’s story became a natural conversation for me and soon we had a team of family, friends and even friends of friends that wanted to help other families like ours.  Within the year I had been offered a position in NWA heading up our chapters fundraising team.  As a part of the mission I just couldn’t say no.  It wouldn’t take long for friends to ask me to volunteer for their organization and as flattering as it was to have someone ask I had to stop myself from saying  yes.  Volunteering for me is about the mission of the non-profit.  Does it directly affect me?  Will I be able to reach others with our story?  And it’s not always about the ask for money.  You have no idea who your story will touch on a very personal level.  My time with the March of Dimes is really what set Life with Elizabeth in to motion but as in life, everything must come to an end.  Elizabeth’s life to that point had outlived their mission and I knew it was time for our next chapter.

It wouldn’t present itself immediately, which those who have been following for a while know that drove me crazy!  I was ready to jump back in, change lives, share Elizabeth’s story and become a part of a mission again.  But when the opportunity did present itself it did so with such emotion that I wondered if I was up for the challenge.  Earlier this summer I heard Elizabeth across the house waking up early on a Sunday morning.  That hot morning sun that had become my promise so many years ago was high in the sky, beaming rays of light throughout the house.  Elizabeth was happy, blowing kisses and clearly ready to start the day unaware that summer means sleeping past 6am!  As I pulled back the sheets I noticed a familiar object laying on her bed.  My first thought was how did that get there, my second thought was how the hell did that get there?

Elizabeth is fed through a mickey button which is on the inside of her stomach so seeing it laying on the bed meant a possible trip to the ER.  In most cases the button can just go right back in the gaping hole in her stomach which I have become quite experienced with but her button had been damaged and a new button was going to be needed.  Here comes an insurance rant so prepare yourself.  Insurance will only allow for one button every 6 months and will not send you a replacement until almost 5 months in.  Insurance companies do not grasp the concept of having anything extra on hand just in case something should happen.  We were for sure heading to the ER.  We checked in, gave as much detail as I could and waited for the doctor to come in and replace the mickey button thinking we would be home within an hour.  The doctor came in and without much sympathy told me she was sending us to ACH in Little Rock.  I thought maybe she didn’t know how to change the button so I explained I could easily do it for her if she would just give me the button.  It was explained to me that the hospital did not routinely carry mickey buttons and therefore did not have one to give me.  I had absolutely no choice but to drive the 3.5 hours, spend less than 2 minutes having the button replaced and drive another 3.5 hours home.  There was no need to yell, cry or demand the CEO to complain so I gathered Elizabeth up, called Caroline and told her to get dressed, get your phone and charger and some snacks oh and your brother as well because we are taking a road trip.  I’m just going to purposefully leave out the reaction and 7 hours of complaining that followed this phone call!  When we arrived at ACH members of our awesome team were waiting for us and began working on Elizabeth.  2 minutes, it literally took 2 minutes and we were back in our van heading home.

There are many amazing non-profits that raise money for Arkansas Children’s Hospital.  But I wanted to find the one that I best fit in as a patient family and that the money raised would stay right here in Northwest Arkansas and specifically go ACH.  I would quietly visit chapter meetings, meet with board members and research until I found the one I thought for sure would be the right fit for me.  That organization is Circle of Friends.  As a patient family we are directly connected to the mission which is why becoming a intimate part of this group is so important to me.  People volunteer for many different reasons but when your life is so tied to the mission it becomes more than monthly meetings, more than a group of men and women recruiting others to join, more than fundraisers; it becomes a part of you who are.  Your passion is real and many times others won’t understand the emotions that come with volunteering for something so woven into your heart.

This image is far to familiar.  For years I have watched as Elizabeth has been loaded into the back of an ambulance or onto a helicopter and rushed to Little Rock.  I am helpless as I follow with my flashers blinking as I weave in and out of traffic praying she is still with us when I finally arrive.  There have been times that she has been there, alone and scared and I am still driving.  This picture alone is why I have chosen to volunteer for Circle of Friends, why I believe in ACH and the value it will add to Northwest Arkansas.  This is where I live, this is where my daughter will receive her medical care, this hospital has become a way of life for us and soon we will be able to walk through the doors of a hospital that will provide Care Close to Home.

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