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There are moments that contribute to the patchwork of our lives, both the good and the bad. Then there are those moments that define who we are and what we are made of. Some have the ability to take hold of us, chew us up, and spit us out in the cold, dark wilderness leaving us feeling numb, shocked, disoriented and lost. Some even leave us struggling to breathe.

April 11, 2013 was that kind of moment. It was life-altering. It took place inside that dimly lit exam room where I was about to have what I thought would be a normal, unremarkable, follow-up 30-week ultrasound to check on our baby’s slightly enlarged kidneys. There I was, blissfully awaiting a sneak peek of our third littlest love growing inside me. Instead I heard what every parent should go a lifetime without hearing: “We have found what looks like a major bleed inside your baby’s brain.” There I was, alone, hearing those words echoing in my head, scared beyond belief. Panic-stricken, I called my husband, only able to cry. I still don’t remember the words I said to him.

From that moment on, our world spiraled out of control in disbelief and fear. Even today, I still can’t put those feelings into words. Our world became that of ultrasounds, MRIs, blood work, fetal echoes and a team of specialists. Consultation upon consultation. Tears upon tears. Disbelief upon disbelief.

I knew this could happen, but not to us. Not to me. Not to our baby. Our daughter’s diagnosis was worse than we could imagine: a massive intracranial hemorrhage, the cause of which was unknown. Severe disabilities, hemiparalysis, hospitals, specialists, rehabilitation. We were asked if we knew anyone with special needs. No, we didn’t. We were alone.

Weeks passed and we moved into our new reality. We read. We asked questions. We researched. We prayed. We became hopeful. We prepared ourselves for what everyone called the new normal. We were loved, supported and lifted with strength from our two children, our families our friends and our little baby growing inside. We were hoping for the best, whatever that was and we would take on whatever life had in store for us.

“What we once enjoyed and deeply loved we can never lose, for all that we love deeply becomes part of us.”
– Helen Keller

Then came May 23, 2013, the day of mixed emotions, the day we would finally get to meet our daughter, this tiny being of uncertainty, the one who would change not only our lives but the lives of so many around us, the one who would teach us more than we ever thought possible. Katelyn was born via c-section and she surprised us all. She needed no medical intervention. Even with her damaged brain, she was utterly perfect. As an outsider, you would have never known there was anything wrong.  It was as if the doctors had misdiagnosed her. That was all I was praying for. We had four days of this amazing bliss of uncertainty. We were so incredibly hopeful.

The doctors were unfortunately not wrong. The days that followed were both more awful and more wonderful than I could have ever imagined. Ironically enough, those moments played together in chorus. They were full of medical procedures and surgeries, scans, xrays, tubes, lines, boluses, transfusions and more words I wish I still didn’t know. There were sleepless nights and endless tears, fear and helplessness. But they were also full of light and love. We held our sweet baby, had visits from our older kids, and received caring notes, thoughtful gestures, loving embraces, meals, music in the healing garden and a shoulder to cry on. We journeyed alongside nurses, doctors , family and friends, always feeling wrapped in their kindness and compassion. Those days taught me more about fortitude, faith, love and trust than ever before.

On May 30, after two days of what seemed like a downhill battle we decided that there would be no more touches of intervention, only touches of love for our baby girl. On May 31, our brave daughter, Katelyn, full of so much grace, ended her battle and took her last breaths in our arms in the Stollery Children’s Hospital surrounded by family and friends under the starry night sky. Our hearts shattered for the loss of possibility, the dreams, and the physical touch of her tiny body that we would never feel again. Her last moments, although incredibly heartbreaking, were also so peaceful and beautiful. It was a night filled with so much love you could feel it move throughout the room. I will be eternally grateful for those eight days we had with our youngest daughter. And although that wilderness that we were once so afraid of is vastly different, yet just as unknown and frightening, it is because of her that we have the courage to move through it.


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