10 year heart-versary

 Today we visited the Mother Cabrini Shrine in Golden, Colorado. What stuck me most about this Saint was her start to life. Not a big bundle of joy and good health, instead she was frail and sickly. Miraculously, she was only one of four siblings, out of thirteen, who survived adolescence. She felt called to a holy life, yet was rejected from the order that had educated her in school because of her health. She was defined as disabled. Yet, this frail young girl had a heart for life and her calling. She went on to live to the age of 67, and in those years of life she founded an order of sisters that continues today. She opened orphanages, hospitals, and schools in various places around the world, many here in the United States. Sixty seven institutions were established by this “disabled” woman, institutions that would serve so many people over the years. Her perseverance over adversity, and her heart to serve those marginalized and less fortunate allowed her to overcome the limitations put on her by others.
 Ten years ago today, John and I spiked our young son’s hair green – the color of life, and one that said “notice me….see me, and not my disability”. We held him in our arms. Our hearts beating rapidly out of our chests. I will never forget the moment I handed him over to a kind looking nurse and watched her carry him through some doors and down a hallway till he was out of sight. Peter was going to have open heart surgery, and we prayed he would come back to us. At merely seven weeks and just barely 9lbs, he was heading off to have his chest sawed, clamped open, and his tiny heart repaired. The hope was that repairing his heart would improve his severe pulmonary hypertension. His cardiologist at the time described it as the worse case of pulmonary hypertension in a neonate that he was aware of, and the prognosis was not good. If we couldn’t get it under control, we would spend the next 12 months of our lives watching him die. A lot hinged on this surgery which within itself was nothing we thought we would go through with a child. We had spent most of those seven weeks in the NICU living and breathing by numbers and endless alarms going off at all hours. Peter struggled to eat, to breathe, to simply live. We were told his heart and lungs were working at the pace of running a marathon non-stop for seven weeks. He couldn’t consume enough calories to make up for what he was exerting, so we tube fed him every two hours to get him strong enough for surgery. The six to nine months we had, rapidly became 7 weeks as Peter worsened.

Minutes before heart surgery – July 2nd, 2007


A day after open heart surgery. July 2007

Fast forward to today, not ignoring all the other medical challenges Peter has had, and Mother Cabrini had to be looking down from heaven smiling at Peter. He climbed all 373 steps from the base of the shrine to the top where the large statue of Jesus overlooks the valley. At each landing Peter would say “almost there”, before realizing he still couldn’t see the top and adding, “oh, okay”, as he plodded on. The statue was the Sacred Heart of Jesus. So fitting. The devotion to the Sacred Heart of Jesus reflects on the long-suffering love and compassion of the heart of Christ towards humanity. Love and compassion towards all humanity. Love. Compassion.

At the base of the Mother Cabrini Shrine…ready to climb 373 steps up, and then back down.


Sacred Heart of Jesus, Mother Cabrini Shrine – Golden, Colorado.

 As we celebrate Peter’s 10 year heart-versary, reflecting on the life of Mother Cabrini shed a profound light on the moment. Not unlike her, Peter lives a life in which people often see his disability before they see him. Where people, consciously or not, place limitations on him – me included, failing to see his potential instead of his adversities. When I was pregnant with Peter, I was sure he would beat the odds. Surely if I believed enough, he would have less challenges and achieve more. My own simple ignorance to what was to come, and my innate need to measure success by a sense of productivity and achievement. Well, I was wrong. If there is a one in a million chance for a challenge, Peter is that one in a million. He struggles far more than even his peers with Down syndrome. If we measured his success by his productivity and societal achievements, well, we wouldn’t be doing so well. Yet, I argue, that the sickly part of his body that needed fixing is truly his greatest gift. Peter has HEART. He has a pure and infinite joy for life. He believes everyone is deserving of acknowledgement, a smile, and probably even a hug. Adversity may be a speed bump in the road of life, but it reminds us to appreciate the sweetness of all that comes with it – like kind or funny nurses that believe in you even when chemo makes you feel crummy.
 The simple reality for us is that Peter’s physical body is a complex bundle of frail organs wrapped in a stocky and sturdy little body. One day his lungs and heart will likely struggle to sustain his life given the damage they’ve incurred over the years. When that time is, is a time I choose to not guess. Whether his life is long or short, Peter’s perseverance over adversity and will to live his calling rivals Mother Cabrini. To wake up each and every day ready to love life, live with an unending curiosity and sense of adventure, an ability to see beauty in simplicity, to see the goodness in others, and always ready to hold a hand, give a hug or plant a big kiss on someone…..and that love and compassion has been towards all of the humanity that he has experienced. From the hurt sibling, the helpful friend, and the loving teacher, to the lonely stranger at the end of a church pew, the homeless family standing outside, or the barefoot man walking the streets. In a world that sees Peter’s disability and limits him, Peter sees no difference in those around him. As John often says, “Peter is an equal opportunity hugger”.

Happy 10 year heart-versary, Peter bear!

 So as we celebrate 10 years from his life-saving surgery, I hope that we will all reflect on the power of our own hearts. May we be inspired by those considered disabled and with limited potential, and find our personal calling to live out a life that shows love and compassion to the humanity around us.