This season has been one of the most difficult seasons in my whole life.  I know those of you who know me, us and our story might be thinking, “How is that even possible? More difficult than battling cancer?”. Yes, a thousand times, YES!  I’m going to tell you a story…one that isn’t easy to tell and has given my heart some of its many scars.

Ten years ago, on October 18^th, our precious Chloe-Bella Bean made her shocking entrance into our life.   Chloe and her scheduled womb evacuation did not follow THE plan.  She had numerous problems right from the start.  We were not prepared for the child who entered our life that day.  We were only prepared for our idealistic version of what we expected Chloe to be. On October 18, 2007 our hearts, hopes and dreams we had for our daughter were shattered. It was like getting sucker-punched repeatedly.  Anger, denial, and anxiety plagued our life. Chloe’s immune system didn’t work properly and she was medically fragile in the lungs (forever), just to name a few of the difficulties we faced (and continue to face).   Chloe struggled to stay alive.  She gets rare and unusual infections, yet has beat the odds time and time again! We were told she wouldn’t make it past the age of five. Every breath was an exhausting battle.  As her mom, it was devastating and heartbreaking to watch as infection after infection assaulted her tiny body, taking up residence in her lungs.  Day after day we continued to wake up separated and torn, crushed and alone in the same nightmare as the day before…the thorn piercing our side was relentless, causing extreme pain and suffering. Don’t worry this story has a happy ending and is not all doom and gloom so keep reading!

Many times I have prayed over this thorn in my side; this heartache; this brokenness, yet it remains and we continue to persevere when we are sure the thorn, the adversity will break us.  Countless times in the past 10 years I wondered if we would remain intact as a whole family unit, unbroken, untouched by the persistent and ruthless battles.  I have struggled to see how this path we are on could possibly lead to somewhere good like we are promised in Romans; to some spectacularly beautiful outcome.  The truth is we are broken; shattered like a beautiful, whole piece of glass when it hits the tile floor, but together our broken pieces fit.  The broken pieces make us the family unit we are today. We are scarred but for the better, for through our scars we find strength and hope.  Our scars tell a story; they tell the truth and help keep us grounded and humble; they remind us that we are vulnerable and incapable of human perfection by our own strength; they are our legacy.

Have you ever seen the sunlight when it reflects off of a broken piece of glass or or one  with cut angles?  It’s breath-taking.  The colors are spectacular and often leave us speechless.  The beauty is like no other! It took years to arrive at this viewpoint but this is how I see our family…like thousands of tiny broken pieces of glass that fit together to make a magnificent rainbow.  Through our brokenness we are made stronger; refined like a precious medal; unique to the struggle we endured; valuable and priceless.  While Chloe may seem like just a broken dream, a broken piece of glass that doesn’t fit, a hardship or a thorn in our side she is far from it.  She is one part of the whole; one fourth, and without her we are not complete.  Our circle would have a big, gaping hole in its fortress wall.

In June, Chloe developed a very rare lymph node infection in her neck….another devasting blow.  To the astonishment of her medical team, she rallied and survived yet again. Often we are faced with difficult decisions that involve our daughter and we try to make the best choice; the one that has her best interests at heart.  We had to make a tough choice this year…one that involved extreme pain (for the past several months) but would lead to a better life once we got through the struggle. Chloe needed her jaw distracted by at least 21 mm to give her a bigger airway and hopefully make it easier to breathe.  On July 11th (the first of 3 major surgeries involved) Chloe underwent a 2 1/2 hour surgery in which the doctor broke her lower jaw bone bilaterally (on both sides)  and placed titanium arms onto the bone with screws hanging out of her face.  Every 12 hours we had to turn the screws manually one full crank (.5 mm) to pull her lower jaw forward.  We prevented her broken bones from setting for three weeks straight.  Was it tramatic and horrible for everyone? YES!! Was it worth it in the long run? YES!  Was it difficult to see the good while going through this time of torture? YES!  It was my most difficult task, to date, as a mom.  I had to look my angel baby in the face twice a day, every day, and inflict horrible pain on her (as if she hasn’t gone through enough pain already) and she was a champion; a warrior who continued to love unconditionally.  Chloe greeted each torture session with a smile and a hug.  She’s my hero; my reason to love better and bigger.

Today, as I’m writing this, Chloe is in the OR getting the titanium arms/screws removed off of her jawbone (and after will go to the ICU for 2-5 days).  It is a bittersweet, emotional milestone as it is Chloe’s 25th surgery!  She is a fighter; strong and brave and tough as nails!  This week Kev, Jake and I took a trip down memory lane.  We have lived through so many adventures…some good and some bad.  One important quality that we have as a family is that we always manage to find laughter amidst the pain.  Jake used to kick our shins whenever we had to do something that would hurt his baby sister (i.e. give shots twice a day, change her nasal-pharyngeal tube every 12 hours, etc.).  He even threatened me with “mommy jail” once saying I was going there for my bad mom choices (Uh, mom jail…is this even a thing?! Yes please! I would love to go and if we get a last meal before the electric chair I’ll have steak, a baked potato with everything on it, tossed salad and a gigantic bottle of red wine!).  Jake’s fiercely protective of his little sister.  He has such a pure and genuine perspective when it comes to Chloe.  He really sees her for who she is and not who the world believes her to be. Last week, Kev and I were humbled (and reminded of the importance of perspective) by Jake’s description of his sister to a friend who hadn’t met her yet.  The timing couldn’t have been more perfect to overhear this conversation.  Jake had a friend coming over who had never been to our house before.  He didn’t know I could hear and it humbled me beyond words and yes, tears we streaming down my face!  The conversation went exactly like this:  “You haven’t met my sister yet, but today you are going to.  Her name is Chloe.  She is very special and I feel everyone could learn a thing or two from her.  I want you to know that she is in a wheelchair, but that doesn’t define her; that’s not who she really is.  Chloe is just like you and me.  She laughs at funny things, loves pizza and loves watching movies or going to the movie theatre.  Chloe loves animals, hugs and her favorite color is purple.  She will notice if you don’t say ‘hi’ to her and I will too.  She says some words and knows some sign language.  Last week she was in trouble for using a swear word and laughing about it.  Chloe can be mean and sassy but since I like you she will too.  So yeah, she’s basically your typical naughty ten-year-old girl.”  In this moment, my heart melted right out of my chest.  Like the world, I, too, am guilty of failing to see from the right perspective at times; to see past the disability at the loving, trusting child inside.  Chloe is exactly who God wanted her to be.  She might not be physically whole and looks different than what the world perceives as “normal”, but she brings so much depth, value,  love and laughter to our family.  We wouldn’t be complete without her.  Thanks, Jake, for reminding us of the importance of perspective.

Some pictures taken during this difficult season….(Left to Right) – 1. Chloe’s beautiful smile; 2. Trail was covered with purple one difficult day; 3. Very sick with rare lymph node infection; 4./ 5.  After the first surgery- Installation of hardware and breaking of the jaw;  6.  In extreme pain…calmed by nature and a few favorite purple things;                     7. & 9. Turning the screws to pull the jaw forward;  8. Comfort from daddy; 10. Birthday outing to the ZOO!