The above photo is me as a brand new momma, with my 2-day old, first born daughter. She's giving me the exact expression that I'm thinking in my head. Those early days of life are so fragile, so dear to me.
April is Donate Life month, and I'm delighted to have my friend, Kelly from Cloudy Day Gray here to share her story. Though I'm in full support of organ donation, I've never had to think about pediatric organ donation and the 1,900 children in the United States that await an organ right now. I'm joining in Kelly's efforts to show how we live and donate life every day with our children and families in hopes of spreading awareness about pediatric organ donation. Won't you join in by tagging your photos #HowIDonateLife?
Before my daughter Matilda was born, I didn’t know anything about pediatric organ donation. I had never really considered the fact that children even experienced organ failure. And, I certainly had never considered the fact that the organ donors may need to be children themselves. These aren’t the things that parents want to think about.
That first week home with Matilda was full of the sweetest moments snuggling close, but it was also full of more worry, concerns, and self-doubt than I ever remembered having with my first. After three doctor visits, a late night trip to the ER, a transfer to a children's hospital, and the longest ambulance ride of my life to NYC, Matilda was diagnosed with acute liver failure, put on life support, and placed on the organ transplant waiting list.
I took Matilda's tiny hand in mine that night and whispered to her all my hopes and dreams. Our life took a dramatic shift, but I knew it was my job to learn, cherish every moment, and move forward with every breath - hand in hand.
The five long weeks we waited for an offer were the most challenging of my life. The endurance and pain of waiting was to be expected – I had my faith for that. But, there was so much more than just the wait. It was the separation from my son, the long nights at the hospital bedside, the alarms sounding constantly, the moments holding our breath when death was near. It was learning what everything meant – all the medical terms, the decisions, the side effects, and countless unknowns.
But, during that time my eyes were opened.
My priorities re-adjusted.
My goals broken down.
My heart opened.
I saw more kindness than I ever expected. I felt more strength than I knew existed within me. All of my emotions were amplified and for the first time, life felt simple. My goal each day was to show as much love to Matilda as possible - and that was enough.
Everything was being done medically to keep Matilda alive, but without a new liver we were urged to say goodbye. With lots of prayers and sweet lullabies, we made molds of her hands and feet, read her all of her brother's favorite stories, and promised to never give up hope. That very night, Matilda received an offer.
She received her liver transplant on her six-week birthday. While it was extremely risky due to her age and size, everything went smoothly. The surgeons were amazed that she was still alive because only 2% of her original liver was still functional. The gift from a two-week-old really was Matilda's only chance at life. A life full of joy, laughter, and zest.
This isn't the life I expected for my daughter, but it is the most beautiful life I have ever known.
Please join me as I gather 1,900 photos on Instagram to bring hope to the 1,900 children, just like Matilda, who are currently waiting for that same chance at life. Follow this link to learn more and get involved.