I peer intently into his incredible blue eyes, my lips gently brush his cheek, hope everlasting that his fluttering eyelashes might chance to touch my face. He pulls slightly away and gives in with a goofy smile. And then a widening of his eyes and a look of genuine surprise, an expression that I have not seen before. He stares intently, struggling to see the image directly behind me and soon I am overcome by an awesome sense of the presence of God in my boy. There it is…a look of wonder radiating from his upturned Down syndrome eyes as he gazed past me in awe at a vision known only to him. Uncomprehending, like the slow learner that I am, I spin around to a blank wall and then back to my Christopher. He can clearly see what I cannot, and it is a wonder to behold.
I witnessed it twice in ICU as I cuddled him, gently encouraging him to get well. It was in those moments that he shook his fawning mom off, so he could enjoy the vision beyond. It was staggering to witness.
Family sit around the clock for a month, there is never a moment that concerned eyes glance away. Friends call or stop in and offer help. Jude stops by and cries, she brings messages of love for “the angel”. Doc Naomi Chaney texts every day and Doc Greg Sholeff, like the old days when doctors paid visits to the home, comes by several times and tells all who will listen, this is a special boy of the highest order, he inspired a movement of love and activism for the disabled. The Saint Rose medical team pay attention. They love him too.
We brought him home this week where we can hold him and love him, his health is even more compromised. The team from Nathan Adelson Hospice accompanied us and made the transition to home smooth and warm and kind. Sonny and Raquel, his amazing caregivers, always full of optimism, welcomed him into his loving home, and I trip around trying not to show how very angry I am to see my boy continuing to battle a 40 year Down syndrome war.
His 75lb frame trembles as he gathers in the love from the aching hearts of all who adore and appreciate him, his favorite Super Grover silently stands watch while his dad sings and plays piano. We will pour our love into him and hope that love will save the day. We cherish our brave boy so much and are humbled by the intensity of his fight to stay in the game.
And just today…Hallelujah! It is a new day, as the boy with nine lives prevails, he is in the game…here …really here. He will not give up without a fight. His will to live in awesome to behold.
This is the essence of Christopher. Our boy possesses an intelligence beyond our understanding. He will go on his own terms when he is good and ready. He teaches us about human relationships and what truly matters with a serenity and breathtaking simplicity. It is the awesomeness of our common humanity that is today’s lesson from Christopher.
You are the teacher and I am proud of you my boy. You saved us all and I am so very proud to be your mom