Be Strong + Courageous

March 19, 2018 complex heart defect, double outlet right ventricle, heart defect, Heart System, heterotaxy, March 2018 Feature - Sunshine in the Grey, pulmonary stenosis, surgery 0 Comments

Mary Katherine is our walking miracle.

She was born with heterotaxy syndrome and a rare, God-designed, complex heart that we like to say is “imperfectly perfect”. Every imperfection (and there are many) was created in such a way that her heart was perfectly balanced.

For four years she defied odds and was full of life, zest, and spunk without any medical intervention. The day before we met her in China, Lily, her older sister, said, “I saw God in a dream and He is already healing her heart.” Little did we know how these words would become our hope as we learned more about the severity and complexity of her heart.

In December of 2016 we traveled to Boston Children’s Hospital for the first time to meet with her surgeon. I remember seeing this image on the massive screen of the hospital lobby as we walked through the doors.

It reminded me of the stones God commanded the Israelites to take with them after crossing the Jordan on dry land to enter the promise land… stones that would serve as a reminder to all the people that “the hand of the Lord is powerful.” Joshua 4:24.

We were standing at the edge of our own Jordan river, faced with a decision to choose preemptive reconstructive surgery that could give Mary Katherine the chance for a more abundant life. The surgery would be long, complex and risky. Her surgeon was hopeful she would tolerate it well but there were no guarantees.

I was scared. Michael was solid as a rock knowing this was the not only the right decision for our girl, it was the right time to intervene to protect her heart from irreversible damage.

It was time to step by faith into the waters trusting God to make a way. I knew she would need a miracle to make it to the other side.

Be strong and courageous from Joshua 1:9 became our heart song of courage… words of truth that would sustain us.

I spent the next five months researching and asking questions determined to understand every detail of her complex anatomy and upcoming surgery. The girls crafted and hand painted over 100 heart magnets and prayer cards to mail friends and family who would become our prayer warriors.

We soaked up every moment in the days leading up to our return to Boston for her open-heart surgery. We prepared for the worst but were praying and waiting with expectation for the best possible outcome.

In true MK fashion she would keep the journey ahead full of spice and uncertainty.

We were prepared for one surgery and a 3-4 week stay in Boston.

She endured 5 major open-heart surgeries within 5 months to reconstruct her heart.

Even on the hardest days, Mary Katherine’s fighting spirit was our beacon of hope.

We were also blessed to have the support of both our parents throughout our time in Boston. Their steadfast presence, Michael’s unwavering love, our army of prayer warriors and Lily’s quiet strength propelled me forward.

Lily played a significant role in Mary Katherine’s healing and recovery. She would prove to amaze the doctors and nurses with her maturity, medical questions and ability to understand the complexity of all she observed.

Be strong + courageous…the Lord your God is with you. This truth became our strength many times when we thought we would lose her.

One moment that remains etched in my mind was the night after her third and most extensive surgery…

Michael and I walked into her room in CICU. She was surrounded on all sides with a team of doctors and nurses working diligently to replenish the massive amount of blood she was loosing.

I couldn’t breathe. I was weeping and felt completely helpless. All we could do was stand by her side and pray over our girl… tell her how much she was loved. We begged her to keep fighting and not give up.

They worked for over an hour to control her bleeding. As the team of doctors and nurses began to diminish, a quiet stillness settled in her room. The medical dispensing units had been pushed aside in the chaos of the previous hour allowing a clear path for me to walk over to the top of her bed and kiss her forehead.

Had I been standing by her side I may not have noticed it. As I looked over her bed this image took my breath away. God had parted the waters so I would see this reminder of His great love for our warrior.

Her blood had pooled into the shape of a heart on her esmark bandage.

God’s reminder of healing and hope in the midst of despair.

Lily’s words echoed in my heart and became my peace… ”God is healing her heart”.

This was the beginning of our many “heart sightings” as we affectionately call them.

Unexpected heart shaped gifts God has given us over the past year to remind us of His faithfulness during a difficult season of life.

They have become our “stones of remembrance”… proof that the hand of the Lord is powerful.

Her brave line leads us straight to our Savior and reminds us daily of His power to heal and bring hope even in our darkest hours.

Come to the river where the waters overflow… where life is hard and God will give you courage to take the next step of faith.

– guest post by Amy

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