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Two years ago today, we left Children's Mercy and headed home. Well not home exactly, but back to our local hospital with Noah. I left with the news that we should be contacting hospice and with no prognosis for my child's life, but it was the first time in weeks that I felt like I could breathe. I had every hope and dream for Noah crushed while at Mercy, but for some reason, going home gave me a new perspective and hope for Noah. We would give him the best life we could.

Two days proceeding this trip home, our medical team finally answered our questions. We had asked and pushed for some answers as to Noah's diagnosis for weeks. They avoided us and kept telling us they were waiting on more tests. That day we waited for rounds ready to pounce on anyone in a white coat. We wanted answers. We desperately wanted some course of action in healing our child. I was so naive. I still believed. The attending, the only doctor I met in our entire stay with any compassion, told me there was no prognosis. That Noah had polymicrogyria. It is a rare brain abnormality that causes the brain's surface to be bumpy. It affected Noah's muscle tone, his ability to suck, swallow, and gave him a soft airway (tracheomalacia). They actually told me they had to look it up in a book.

That same day, Noah began having apnea spells. He was actually having seizures, but for some reason the doctors didn't believe us because his EEG's were normal. The spells were terrifying. The alarms would sound and he would turn blue. The nurses would rub his back, flick his feet, and eventually bag him to get him to breath. The final straw for us was when we asked why he was not on seizure meds. The nurse looked us straight in the eye and told us that they would give it to him because what could it hurt. He wouldn't survive anyway. It took us less than a minute to start asking about a discharge home.

To end one the worst days of our lives, our neurologist compared my son to a tree. We asked him how long he thought Noah would live. He told me if he looked at ten trees, he couldn't guess which would die. That was it. If I could have found a large object, I would have thrown it.

Noah was life flighted back to our local hospital two days later. It is one decision that I have very little regret about. The nurses prepared his crib with decorations and placed a sweet angel bear for him to snuggle with. They love him. They held him and talked to him. They cared what happened.

The only positive from our experience at Mercy was this. It is the most beautiful, generous gift I have ever received. I can think of nothing to repay her for what she gave me. They are more than pictures. She gave us a chance to be a family. To hold our boys together and not worry about hospice and feeding tubes. We were her first family to photograph and you would have never known. She handled the situation with grace and professionalism. She didn't flinch when she saw Noah and I didn't feel pity when she looked at us. I felt love. She is amazing and talented. I hope someday to thank her.