I have written several times about our neighbor Quinn. She came barrelling into the world a month early on the bathroom floor and commanded attention for every second of her short life. I learned a lot from this baby, and I only met her once.
1. It is possible and necessary to find joy in the smallest things. Her family could have fallen into only seeing how horrible this disease was for their precious baby. Instead, they were able to take notice of the smiles they would get from her, and appreciate them for what they were. Also, for Quinn to even smile with such pain is amazing in and of itself. I understand that I take these things from my children for granted and I have been trying to live in the moment. I am getting much better at this.
2. Never give up. This family was searching for help as soon as this diagnosis was suggested to them. They got her into a trial program and she was the youngest baby to ever receive a bone marrow transplant for this condition. Marc and Mandy faced this head on, and they were amazing advocates for their baby. Nobody knew her better, and they could often determine the problems before the doctors. I hope they can take comfort in knowing that they did everything that could have been done, and then went and did more. I am sure that they have more training in wound care than many people in the profession will ever get.
3. Faith can take you to places you never imagined possible. The whole family operated with such grace under pressure. They stayed positive in the darkest of days and were able to show me that my faith that I have been questioning in the past few years is, in fact, an amazing gift that I need to nurture. I don't know that I could have done what they did, and I am praying that I never have to find out. I learned that God does not always give you what you want, but he does give you what is best. While I am having a hard time wrapping my head around this right now, I know that Marc and Mandy do believe this, and I will support them in any way I can.
4. Strength comes in many different packages. I will never question anyone in their fight, and I will not count anyone out until the end. This baby fought off problems again and again. How such a tiny body could take on so much will always be a mystery. She had EB, that is plenty, but then she had a bone marrow transplant, faced several kinds of pneumonia and battled to the very end. Her fight for life may have ended, but her fight for awareness and a cure has only just begun. She will continue to make a difference.
Quinn's butterfly wings have taken her on to a new place, one of peace and no pain. Her butterfly army will continue to pray for her and her family and hopefully they will also find peace and comfort knowing that their amazing little girl touched so many people in so many ways.