On this day, nine years ago, our entire life was changed.  In one single moment we went from being a family of 3 to 4.  In one single moment my heart was fractured; broken beyond repair (or so I thought).  In one single moment I received one of my biggest life challenges but also one of my greatest joys; one of the most beautiful gifts.

In the nine months leading up to this day God laid a scripture on my heart (actually, in my dream the message was more like this: bind these words to your heart and hold on tight).  The scripture:  “Fear not, for I have redeemed you, I have summoned you by name, you are mine.  When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.  When you walk through the fire, you will not be burned; the flames will not set you ablaze.  For I am the Lord, your God, the Holy One of Israel, your Savior.” – Isaiah 43:1-3 (NIV)

At the time, I thought these words are lovely but I can’t see the stress behind your words in my dream, Lord.  Then, on October 18, 2007 our Bella-Bleu (because she has the most beautiful shade of midnight blue eyes we’ve ever seen) was born.  Nothing could have prepared me for this day.  Chloe-Bella has many special needs but she gives so much love.  She has taught our family how to fight, how to survive, to always, always enjoy the little things, and most importantly, how to love with our whole heart.  She is observant, funny, super sassy, and all day, every day, she loves you with her entire being.  Chocolate, ketchup, and Reese’s Peanut Butter Cups are at the top of her food-guide pyramid; her favorite colors are purple and red; and she once had a meltdown over shoes in a shoe store (just like every other girl I know when they don’t have your size but you aren’t leaving without those shoes).  I could go on and on about the wild “Chloe moments” in our life. She is a true fighter; a determined survivor.  Chloe’s needs are a multitude of complexities that we have had to adjust to and learn to live with.  She doesn’t do anything typically (this includes getting sick… I believe she still holds the record at our local children’s hospital for most bacterium in lungs at one time!).  She was born immuno-suppressed (lacking a working immune system) and medically fragile in the lungs (these are her main diagnoses but she has a collection of secondary/tertiary medical issues).  By her third birthday she had spent a total of 365 days in the hospital (for those of you who hate math, that’s 1/3 of her life up to that point!) and Ronald McDonald house was our second home.  We grieved, we cried (a lot) and we held on to our faith (sometimes only by a single strand), but we made it through together (our family unit still intact).

I spoke at a complex care conference and because this sums it up nicely….. “I am the parent of a special needs child who is globally delayed and medically fragile. Raising a child with special needs is both a blessing and a challenge. You’re their advocate and your role at home is much more than just a mom (you’re a Doctor., a nurse, a fundraiser, a scheduling coordinator, a dietician, a physical therapist, and so much more). My strengths have been diversified through the challenges. I’ve been pushed far beyond my limits. I’ve developed a softer heart and a stronger ability to empathize with others. My ability to think critically in medical emergencies (or any emergency) has been sharpened tremendously. I have to problem solve each day and am required to pay close attention to specific details (vital signs, blood pressure, Oxygen saturations, body temperature, respiratory and heart rate, etc.). My daughter has helped me recognize my passions. I’ve learned to love beyond what I ever thought humanly possible. You don’t realize the depths of victory and true joy until you see your child overcoming some of their challenges.  This experience has helped me realize I can overcome more than I ever thought possible and achieve whatever I set my mind to. It’s helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where they are – no matter how they stack up against a societal ideal. Raising a special needs child shatters all the ideals that we idolize and build our lives around. It puts something else at the core: true love and understanding.” – BS (yes those are my initials, you can stop laughing now 🙂 )

Initially our family was fractured; however we have learned to love better, to be more compassionate,  understanding, and accepting of circumstances out of our control.  Although the cracks in my heart remain, it’s no longer shattered.  In our brokenness we find strength and courage.  I feel blessed that God picked me to be Chloe’s mom even when it’s hard.  Our circumstances have taught me to focus on the beautiful mosaic that is our life rather than the broken moments.

So, while our road has been overwhelmingly difficult at times, I’m here to tell you that God weaves life’s hurts, heartaches and broken moments together creating a  beauty that is soul-deep.

We celebrated Chloe’s 9th birthday on Sunday which is a miracle because she wasn’t initially supposed to make it past 5!  She went to her first real movie in the theater! It was pure joy to see someone appreciate the big screen so much! I’m a little scared by how much she loves Coca-Cola, licorice and buttered popcorn, but it’s all good! Some birthday moments….