Surgery #5 & RMH

Elena completed her fifth surgery this week.  Once again, we loaded up the van and road-tripped east out to New Jersey to see good ole Dr. Nuzzo for the third time.  Thankfully, our hip surgeries are behind us (see here & here) and they are in perfect shape.  Thank God for crazy Dr. Nuzzo!

In the last several months, Elena has struggled with high muscle tone in her right leg, specifically ankle/foot.  This has caused issues with her trying to take steps, weight bearing evenly and getting range on this leg.  The technical term is called a contracture and these are VERY typical in CP kiddos.  Basically her brain is constantly telling her muscles to tense up, often in strange positions.  Hence, her arms usually up close to her chest, her legs extended out, toes pointed, etc.  Over time, these positions cause the tendons/muscles to "shorten" and stay in this position.  We were no longer able to "stretch" her ankle to a neutral/flat-footed position and it was slightly turned in.  I knew surgery was the only remedy but have procrastinated ANOTHER surgery for most of this year. 

Almost four years to the day of her first hip surgery, we found ourselves once again in Summit, New Jersey with Elena on the operating table.  Fortunately, we knew this go round would be MUCH easier, MUCH less invasive and a breeze compared to her previous two hip surgeries.  As we expected, Dr. Nuzzo in his "mad scientist" genius knew just what to do and fixed her right up.  She has three VERY minor (practically scratches) incisions and has been doing just fine.  Her pain has been minimal but are keeping an eye out for muscle spasms (which are totally typical). 

We are back home and she will finish out the week at school!  We are so very, very thankful to have options when these types of medical issues arise for her.  I'm not sure what shape she would be in without Dr. Nuzzo's innovations.  Thanks to all who prayed us out there, and prayed us home!

Of course, we had to fit SOMETHING fun in.  So we popped over to the Jersey coast to see the Manhattan skyline and the Statue of Liberty!  I think Elena was thrilled to have some alone time with Mom and Dad!

Before our road trip to Jersey, we attended the Ronald McDonald House Gala for our 6th year.  You may remember these events from previous posts.  Each year, our loving and generous friends gather to support us and one of our most favorite causes, the RMH.  You may remember how big a role this special place played for us while in the hospital after Elena's injury.  We have been thrilled to be able to give back over the last seven years.  And the RMH has been so kind to include us in many of their fun events and fundraisers throughout the year.  (You may remember Elena throwing out the first pitch at the Indianapolis Indians game earlier this year?!)  

This night is tremendously special for us not just because some of our closest friends join us to raise money for a worthy cause, but because this event almost always falls very close to the date of Elena's injury.  It's been such a precious way to remember and give back to those who helped us in our time of need.  

This year was even more SPECIAL!  We had five tables (50!) people there to represent the Friends of Elena Hinton.  Those fifty people donated their time and money to support the RMH.  Not only that, a special friend of ours matched all our group's donations that night!  We were able to raise $38,000!  Of course, everyone but us was in on the surprise and Chad and I were incredibly moved.  It never ceases to amaze us what people do to show their love and support for our Elena.  So thank you to all of you who were there that night.  You will NEVER know how much we appreciate you, your love and generosity.  

Seven Years Later

As I sat down to write this post, the dreaded November 3rd, relive the trauma, revisit all the emotion-post, my thoughts were all over the place.  From deep reflection of where we started seven years ago to where we are now, to what comes next in our journey, to what I’ve learned as a Mom to Elena, to Calvin and to Turner, I couldn’t nail down a specific train of thought.  I spent two hours writing random paragraph after random paragraph and hoping that in the end I could piece it all together in some fluid, sensible piece.  Well, I couldn’t (ha!).  So this is what I could piece together.  Whenever I share with you, I do my best to be as honest, vulnerable and straight-forward as I can be.  I’m pretty darn imperfect, but this is my experience, how I feel.  I share so that you may find some comfort for whatever it is you’re facing.  Because we’ve all got something, can I get an Amen?!

November 3, 2018.  This year is different.  There’s no explanation really.  I just feel as though my heart has closed a significant chapter of my life.  Much of what that entails, the intense pain, the gained perspective, how I learned to live again feels mostly settled somehow.  As this dreaded date approached this year, I found myself seeing it on the calendar, but not feeling it.  In years past, I would feel anxious as it approached, almost stuck in a reoccurring nightmare.  I would relive the entire day.  This year has felt like more of a remembrance, a day to note, not a day that grips my insides in terror and grief.  It replays in my mind with a deep sadness, but not the horror like it used to. 

I haven’t quite identified the reason for this yet, though for some time (as I’ve written about), I’ve been much more at peace.  It has felt as though I had begun to walk away from the trauma, settle my feelings about our journey, even “cruise” for a bit.  But even feeling settled has it’s little ups and down.  I’ve done a lot of clinging to the controls and hitting the panic button from time to time.  It’s so hard for me to remember God’s goodness and faithfulness at times, thinking I know better, that I can do better.  And it’s in those times I need to remember where I’ve been, what I’ve been through, and more importantly, what He has brought me through.

I’m a pretty average person with a pretty average life.  I had something really, really terrible happen to my family.  And in the first 20 seconds of me being told I needed to race to Riley Hospital to meet my (likely dead) child, I screamed the only thing I knew to scream.  Jesus.  Nothing else.  No prayer.  No please let my child live.  No what happened.  Just Jesus.  And seven years later, even through the darkest, hardest, loneliest days of my life, He has been there.  Whether you began reading this blog seven years ago or seven days ago, I hope you realize that all of this is credited to that.  Not to me or my strength or my writing or my love for my daughter.  There has been one thing keeping me going, our family together, and our daughter the light to so many lives.   

Sometimes I forget that.  I get all wrapped up in my feelings and my fears and my anxieties about how hard life is.  I panic about what comes next, how we will endure, how to keep it all together.  And all along the answer is always simple and whispered in every beat of my heart.  Jesus.  I don’t know why this happened to us.  I don’t know why she lived that day.  I don’t know what lies ahead.  But I do know He is good.  He is faithful.  He loves me more than I could ever possibly fathom.  I know I don’t need to have all the answers to go on.  I just need these truths.  And to remember what He has already carried me through.  The rest of it is just complicated, feeling-ful me, navigating a life that I didn’t expect.  Yes, it’s messy.  Yes, it was traumatic.  Yes, it’s grief I’ll carry for ever and ever.  But, I’m loved and I never have to carry the weight of this alone.  I never have to do this perfectly or with ease.  I just trust. 

I welcome a pain-free November 3rd.  I have long preferred it to be a celebration that my child lived, my heart has just taken a really long time to ease it’s grip on the trauma and focus on the joy.  There was so much darkness that day, everything we held dear was under attack.  However, I choose to remember all the love that filled those hallways, those tiny hospital rooms, our hearts, the hearts of those who held our hands. Those wonderful friends and strangers who surrounded us, held us up, prayed with us, I remember.  And of course the miracles, there were many that day.  I choose to remember that.  Our Shining Light was re-born that day, her light brighter, our love stronger, our faith deeper.  We choose what we remember.  And on this day, seven years later, I remember that love won.  He saved her.  And He saved me.