20 February 2014

"Home is where you make it" - Joe Dirt

A classic movie character, Joe Dirt, coined the phrase "Home is where you make it." For all of the quirkiness in that movie, it may seem a little boring to some that this is one quote that's always stuck with me.  Aside from what I'd consider his most obvious flaw, offering a very naive and blind trust to nearly everyone he meets, at the core of the Joe Dirt character is someone who is optimistic, accepting and willing to persevere.  Someone who is a chameleon in life... a person who has the ability to adjust to his circumstances based on the situation he's been placed in, all while maintaining a positive and friendly attitude towards those he meets.  He is at "home" regardless of the setting.

It feels good "to go home"  following a long journey and it's nice "to be home" when you want to relax in faded, stretchy-waisted yoga pants and a hole-y t-shirt with a 4H image (my choice tonight).  "Home is where the heart is" when your family is near and "Sweet home Alabama" evokes nostalgia about the state, even for a small town, Midwestern farm girl from Ohio who's never visited.  Home is where you're comfortable, can let your guard down and "be".  Home just feels good.

Today we visited what's become a second home for us over the last 18 months and a place that I have a vehement love / hate relationship with... The Cleveland Clinic.  When I think about the Clinic in perspective of home... it's the place where we welcomed an addition to our family, sweet baby Luke.  And it's the place where we celebrated our first moments as a family of four on Christmas Day 2012, in a private room, which was a special accommodation made for our family that day.  It's this huge maze of a place that we've visited so often that we no longer need a map to navigate, even when appointments span the entire length of the facility or for that matter, sometimes even different branches of the network.  It's where we have a favorite girl at the lab downtown who we ask for by name when getting blood drawn.  I have a favorite food in their cafeteria, if you can believe there's anything good enough in a cafeteria to be called a favorite.  It's a place where I routinely share hugs, today it was with hometown friends who were at the Clinic for some tests for their school-aged daughter and with the Director of the NICU where Luke spent the days following his birth.  I actually look forward to these chance meetings when we visit because they seem to happen nearly every time we're there with a nurse or a specialist or even on days like today, a friend from "home".

"Home" is a place where safety comes first and although I'm not a fan of the undoubted millions of germs floating around in the air in that particular environment, in some ways there can't be many places that could be considered much safer.  Surely thousands of specialists abound and there are medical records with test results galore... it can be a serious high for those seeking to execute intense brain power.  For someone like me who considers herself better safe than sorry and who is constantly seeking information and input, I find immense comfort in the "home" that I feel when I'm there.  Their pediatric emergency room is a beacon of safety when I observed our young son with a major congenital heart defect as tachypnic and discovered a high grade fever at 10 PM on a Sunday night.  There is comfort there in being attended to by nurses, nurse practitioners and doctors who care about the well being of our family.  I do however, hate the politics and associated business behind medicine and at this point in our journey, I have a serious dislike for the changes that are coming our way driven by ObamaCare.  I am not a fan of the 3 hour round-trip drive to and from downtown Cleveland, especially on days like today that began with us pulling out of the drive at 6:40 AM and not returning until 4 PM... it sure makes for a long day with little ones in tow, especially when the littlest has a test at 9 AM that he's not allowed to eat or drink before. 

Today I was especially disheartened while receiving the results of a recent sleep study which was ordered by our neurologist.  He shared that he believes that Luke has what he's termed "mild" obstructive sleep apnea.  I wasn't really surprised by the diagnosis, but I was discouraged to learn that while we were referred to him by our pediatrician and this doctor ordered the study (following an initial appointment and exam with him in Cleveland in December) that he isn't the one who will be treating the apnea... that responsibility falls on the shoulders of our ENT.  I've become pretty astute over the last year or so to the fact that asking the right questions is vital in this game of health and wellness that we play on Luke's behalf and I think I usually do a pretty good job of navigating this world for our family.... today I was thrown for a loop and was left irritated that I had to follow up with someone to learn that I needed to schedule with someone else to treat the issue.  Couldn't he have just called me to say, "Hey, I have this full narrative report that I'd like to send you, it goes into detail about my diagnosis of mild obstructive sleep apnea... I'd be happy to answer any questions you may have, but before you make a 3 hour trip here and back home, I'd like to refer you to ENT for treatment."  Wouldn't that have been easier for all involved?  (The only problem for the business of medicine is that a phone call is free and surely today's visit will earn the Clinc a few hundred extra dollars)  Yes, I was already at the Clinic for a Swallow Study that morning for Luke and an appointment for me this time too, but those were over at 11:30 AM... I could have been home by 1 PM... three hours sooner and less time around hospital germs!!!  It's a tangled web we weave and today I was left particularly frustrated by the inefficiencies presented, especially as our ENT is in a different network, Nationwide Children's Hospital in Columbus (which is an hour and a half the opposite way of Cleveland from my home).  If I'd known that the ENT would be treating the diagnosis, I would have just started with him to begin with... he may have specific preferences for the sleep study that we didn't comply with this time around and quite honestly I won't be surprised if he asks us to complete another sleep study with his techs in Columbus.

In general, the comfort that comes from vetting potential issues through medical science is worthwhile, and at times even life-saving, but today I felt slighted.  The responsibility that comes with the role of being a parent can be heavy stuff at times and lately I've felt pretty worn out... It takes a lot of energy to manage our family, learn the world of special needs and our particular medical complexities all while being a working mother of two children. 

It's hard to explain, but I feel a lot of "build up" for days like today... we had tests or appointments at 8:30, 8:45, 9:00, 10:45 and 12:55 in Cleveland.  Since personal assistants are expensive and can be hard to come by, I do our scheduling and running around so that meant having the appointments on a day that I could be off work and working with three different doctor's offices to get them all visits scheduled back to back to back, but with enough time in between to have a meaningful visit and still get across campus to the next appointment with time to spare.  We had to leave this morning in time to get to the first appointment while taking into consideration rush hour traffic getting into Cleveland.  I didn't have a sitter for Matthew today so he came along and I was fortunate that my brother was free to come along today to help.  We had to pack to be away for a whole day... double stroller (which doesn't fit in my car, so we had to take the truck, which meant switching vehicles with Dustin this morning), milk for two for the whole day, snacks, baby food, diapers, activities for Matthew while we were otherwise consumed with doctor stuff for me and Luke - iPad, books, etc.  Matthew's potty training so we had to have extra clothes in case of accidents (We didn't have any by the way!! Way to go Matthew!!).  Being up and ready and having two kids ready and on the road by 6:40 AM is no small feat either.  Then there are the repercussions of the kids not getting morning naps and my obsession with germs as we are now leading up to an Open Heart Surgery date for Luke so I'm always washing hands, Purell-ing, etc.  Basically, that's a lot of background just to say there is a lot of preparation that goes into days like today so when I get something that sounds like, "Sorry, you'll need to pass this on to someone else to deal with the treatment",  it's easy for discouragement to set in... which many times leads to utter mental deflation and exhaustion for me. 

One foot in front of the other, one day at a time... If Joe Dirt is right and home is really where you make it, we'll continue to adapt, adjust and to settle in to making the best of our circumstances!  Fortunately, I've learned something really important about myself over the years and it's this... if I'm willing to reflect on my experiences with an open mind... there is an extreme resiliency at the core of my being and I will bounce back.  It's really comforting to think that by the time I wake up tomorrow the morning, I'll probably have taken a lesson learned, moved on and will be better because of today's experience, as annoying as it was in the moment! 

In the words of a dear and motivatingly powerful friend, Russell Gammon, "Onward and upward!"

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