A Mother's Reflection

July 17, 2004

We are overwhelmed at the outpouring of generosity that has been shown to us all throughout this journey with our daughter. We have always been privileged to see how much good Caela's difficulties brings out in others. We are happy to share our daughter with all of you, because we know what a blessing she is to us and that her life had an amazing purpose that will make her darkest days pale in comparison. It is our sincere hope that her story will touch you in a new and lasting way today, and that you might draw from her strength and courage to walk through your own dark days.

We wanted to share some of our reflections on what our life has been like since Caela came into our lives, and give you a sense of what a force for good our daughter has become. Caela came to us in a very special and very unplanned home birth three years ago, and at the time we were completely unaware of everything she would bring with her. From the very first time that little feeling crept up inside of us that something wasn't quite right, it has been a learning process at every turn. We have learned so many good things about the strong fabric of our marriage and our family, about the incredible depth of our friendships with those who have been there for us in the hardest of times, and about the resilience and fighting spirit that Caela carries within of her. As believers, our faith has been tested again and again, but over time, we see that our experiences have repeatedly confirmed the presence of God by our side; we are ever more thankful to Him for sending Caela to us and for giving us the wisdom and strength to walk this path with her. We trust that we are not alone, that He is there to guide us, to provide us with what we need, and to hold us up when we feel we can no longer go on. This day has only deepened this belief...we could have never imagined such a large and wonderful gathering to honor our daughter. 

Those who knew Caela knew that she was a really strong kid. People are always commenting on our strength and positivity as parents, but it is Caela who inspires this in us. She was an exceptional little girl, with a huge personality living in her little and somewhat fragile body, and huge, wise eyes to match. As you all know, she had been through so much, but she was always as feisty and charming as ever, always keeping us on our toes and guessing why she is so different. Spending time with her, you got the sense that she understood more than she could tell us, and sometimes it felt like she was keeping the important secret that could decode all of these physiological mysteries. That's the feeling one walks away with, a knowing that there is more to her than what meets the eye, more than just a long list of symptoms or low developmental scores on an assessment. There was something really special about her that made folks who barely knew her look twice or stop to talk to her or ask us about her. We know we're biased, but it's almost something tangible, and it's an amazing quality. It’s this spirit, this essence, that we have tried to capture for you here today. We had the privilege of spending so much of our time with her, and that time has taught us a great deal about gratitude, acceptance, and joy. We are thankful for her and for all of the people who encompass us with love and support, accepting of the limitations of medicine and of the many changes in our life, and full of joy to have had her among us. It was not always fun or happy in our home, and it did get discouraging, disappointing, and painful to see her go through so much, but the good times were much greater and our source of joy much deeper. We did not live a life consumed by pain and suffering, but an extraordinary life filled with a deep appreciation for the miracles in our midst, for the tiniest blessings that revealed themselves daily, and for this uniquely personal challenge to become bigger and better people. 

Words cannot express how thankful we are for our family, friends, and colleagues. We have been completely supported in this journey by a large community of people who have extended themselves to be there for us time and time again. In any way they could offer, our circle of friends have helped make it easier on us to have such great demands placed on our time and emotions. Complete strangers have given us helpful advice along the way on matters such as medical procedures and care providers, other parents have shared their own stories of frustration and hope in raising a child with special needs, and now since the FunD Fest, dozens of friends of friends and business owners have shown us that Caela's cause is important to them as well. It has been incredible to watch people’s hearts open in response to Caela, to watch complete strangers find ways to give of themselves to help our family. Hundreds, probably thousands, of prayers have been said for our family and we have seen and felt their power over the course of these last three years. We have repeatedly told those close to us that at the darkest of times, we have literally felt carried through; we have no doubt that this is because of those thoughts and prayers. How could one not be thankful after experiencing the force of all of this kindness? How could one not be moved to pass it on? Our cup runneth over...

And so here we have arrived, at this point in the journey, at this celebration of our baby’s life…at the crossroads between heaven and earth. Despite our grief, it inspires a great deal of hope in us - hope for our child, hope for the many families like ours, and hope for humanity. If a small child can mobilize this kind of caring, this kind of compassion, the possibilities for good must be endless! What a better world we would live in if we let this kind of love seep in and around us and turned it back out to others…an unstoppable force for sure! We knew the answers to our many questions about her health were coming…and they did – just in time. We stand steadfast in the path of infinite possibilities and firmly believe that her illness was not in vain – science will learn something big from all that Caela endured, and she will help lots of other little girls. There is a quote I keep close that says "groundless hope, like unconditional love, is the only kind worth having." We remain the guardians of that groundless hope for Caela, and we are joined by Daniel and Joycelin, who always believed all things for their baby sister. We know you would not be here if you did not also carry a piece of that hope. Thank you for joining us today, for affirming our faith in community, and for sharing your love with us. We will never forget your many kindnesses. 

Humbly yours,
Mari-Carmen