Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, June 3, 2013

The Infamous Shoe

The hospital stay last week was unexpected, and therefore, so was our weekly "schedule."  I missed all my girls' end of the year parties, Kaitlin's field trip, Reilly's violin lesson, and the list goes on.  Not to mention the household chores (namely laundry) that completely fell behind from me not being there to balance out the family.  These interruptions, especially the unexpected ones, always take a toll on the family in one way or another.  We have come to learn that this kind of up and down will never change - it's out of our control.  We could have another hospital stay next week - or avoid one for a whole 5 or 10 or 15 years.  But, the fact is, we never know.  We can control, however, how we live with this.  Something I've been asked by some family and friends is how do you live day to day when you are just waiting for that infamous shoe to drop?

Meagan doesn't do shoes

Meagan came home Thursday night from the hospital.  Friday she was still pretty miserable - back to "herself" a lot more, but, I could tell she was still "down." Saturday morning she really woke up "herself" for the first time since her infection.  She was smiling, babbling, and just seemed like the meds had "kicked in" and helped her turn the corner... I could tell she had really started to feel better.  I was so glad about this, but of course the rest of our house was in chaos.  I had lost a week of laundry, house chores, and organizing the kids end of school year stuff...but most of all we lost that week of time as a family.  I knew my older girls were especially feeling this because they really count on our routine day to day and when Mommy isn't there, it is really tough on them.  We  had no grand plans for the holiday weekend, but, after talking to Brian we decided to randomly shoot up to Chattanooga, TN.  It's only about an hour from where we live and makes for a nice little getaway without being too far from home.  I figured we could all use the break, and time away to just regroup as a family.  We packed a small bag, loaded up Meagans feeding pump and meds, and hopped in the car. The girls were beyond excited!

Finally strong enough to go in Mommy's Ergo carrier!

Girls were so excited

We planned a few outdoor activities while in Chattanooga, one of which was taking the girls to a minor league game (which is great because the seats are cheap and close so they can actually see the baseball game).  We happened to sit next to a couple who we chatted with off and on throughout the game.  Come to find out, he was a Perinatologist.  Go figure.  They were very nice and even bought our girls popcorn because they were behaving so well.  I thought that was really sweet and the girls were just so excited to get an unexpected treat. They also got to see some fun fireworks after the game celebrating Memorial Day weekend.  Maura was not too fond of the noise...but Meagan liked them just fine!

Meagan loved the fireworks.....

....but we learned she does not like hats on her head!

We also planned a few hikes through the famous Rock City and also underground to see Ruby Falls.  It was such gorgeous weather, we figured a lot of outside activity would be great for the girls - and the fresh air would be great for Meagan after being in the stuffy hospital the week before. The girls enjoyed the hikes, exploring the natural rock formations, and expending a lot of energy walking, running, climbing and overall enjoying the outside activities.  From rock climbing to watching live mountain music to swimming at the hotel - we had such a great time and a much needed break away from it all as a family - "just" the 7 of us.

Pool time!

Seeing Rock City

Heading down into the caves

When we got back, one of the first things I was asked was how Meagan was feeling.  I replied that she was doing much better and had been such a happy baby over the weekend.  And that's when the question was posed - how could we just pack up and go away for the weekend when Meagan had just been at Children's? Weren't we worried?  And that is where I realized that from the outside, a lot of things we do probably do look a little "crazy."  From the outside, it may seem silly to run out of town on the tail of a hospital stay.  Or to plan a family vacation after a surgery.  And the list can go on and on.... but from the inside, it is completely normal to do these things.  If we try to wait for months and months of uninterrupted time to feel "ok" to plan family activities, we would never do anything.  We would always be waiting around.

I guess that's what I learned over our weekend away.  Thinking back on my friend's initial question the week prior about "waiting for the infamous shoe to drop" .... I guess we just don't.  We don't wait around. We don't constantly worry. We just "do."  We just "go."  We just live.

Meagan taking in the waterfall

We will always be vigilant in Meagan's care - we just know her and her tendencies so well at this point, we keep a very watchful eye.  We carry her records and her CT scans with us.  We take her meds and her feeds along.  We always know the best place to go in case of an emergency.  But from day one, our main goal for her was happiness and love - that she always felt those two things around her.  The best way to do that (besides insanely spoiling her with attention and hugs and kisses) is to live and let her live with us.  If we were to always sit around waiting for that shoe to drop again, we wouldn't be giving Meagan a life.  Sure, things may happen that are unexpected.  But that's when you pull up, deal with it, and then hop right back on the horse.  We don't want to give her a life of waiting.  We want to give her a life of "get up and go."  So that's what we did last weekend.  It was random and it was on a whim.  But that's the joy of life. Unexpected things can pop up at any time, and that same spontaneity is how we should deal with life when things are going well.  So, while there may always be that "what if" or that "what else can happen" at the back of our minds, we certainly don't let waiting for those things to manifest occupy our focus.

No waiting in this house...on to the next adventure!

It is important to me that, above all, I keep our family unit strong.  We do that through everyday things like helping around the house, playtime and trips to the store.... and also through impromptu things,  like our trip last weekend.  While my girls will grow up more sensitive to people with needs and challenges by having a sister like Meagan, I also want them to grow up knowing that life shouldn't stop because of it, and exposure to many different experiences shouldn't halt at the feet of those like Meagan either.  In order for me to teach them how truly precious life is, we have to live it even if on the heels of another setback.

Life is too short to wait around.  If we did, something great could pass us by.  I don't want Meagan to be a bystander.  I want her to be the driver of her experiences.  The infamous shoe is there. We know it.  But until it shows its ugly self again, we press on. There's no waiting in this house.  We cherish the happy.... we share the love....we grasp onto faith.  By doing this, we live. And I think Meagan likes that. :)

 Taking it all in

No one said life isn't exhausting at times :) 


  1. I am envious of your attitude. I'm not sure I would have the guts to travel right now (if we ever get out of here that is). This last month has left me really shaken and untrusting of Ellie's health. I can only hope I can come to a place where we can go on "living" once more.

    1. It's kind of how I've always been... and Meagan "plopped" into our lives and how we live it. You will get there for sure once you guys get home for a while!! I know it's so tough especially in those months where the challenges and hospital stays seem endless! But it will end... and whether it's for only a day or for a whole year, grasp on to that time and do something fun for yourself and Ellie and your family... doesn't even have to be a random trip! Just a drive to get ice cream... or a planned family picnic out back for the upcoming weekend... anything can be "living".. we just need the right attitude :) Hugs and prayers!