17 years. he's been alive and in my life for 17 years, this boy who wasn't expected to survive. when i read the foster care referral, i skipped right over the part where it said, "possible death", but i have been negotiating with Death for what seems like every minute of these 17 years.
i can recall the first time i saw his sweet being like it was yesterday. so tiny and perfect, lying in his bassinet in the NICU. he didn't look sick, he looked angelic. at that point he was just supposed to be my foster child, but my soul knew better. i was meeting my destiny-- my most important teacher, my inspiration, my reason to crawl out of bed each morning (and often in the middle of the night, even after 17 years).
jack has survived so much: 6-hour long seizures, pneumonias, 14 surgeries, and sexual assault by a school employee that stole his sense of empowerment and safety and so much more. he survived a broken femur last year when i tried to adjust him in his chair and snapped his leg beneath my hands instead. he's endured so much, and still manages to greet each day with a smile... well, often he greets the day with the typical teenaged grumble and complaint, but he manages to find something to smile about by the time he leaves on the bus. those mornings when he catches my eye and gives me his sideways grin as he gets on the school bus can buoy me through the entire day.
jack is my guru. he’s not an angel; he’s a strong-willed, stubborn teen who can drive me crazy, and laugh in my face while he does it. it’s a given that if i choose to lock horns with him, i will lose. there are times i lose my sense of humor, but jack’s always there to remind me that the gentle way is the most powerful one. i can see his laughter as disrespect, or i can see it as an invitation to stop, breathe, and remember that what’s important is connection. presence. listening with the heart. and every time i do that, what flows between us is so— freeing. so crystalline in its goodness and comfort. my boy’s smile is a gift that nothing can match, when i choose to let it in.
but yeah, Death. i can never quite shake the memories of the times in the ER, begging jack to hold on while 6 different people scramble to push meds, insert a breathing tube, draw blood in a coordinated dance to keep him alive. that feeling of being awakened in the middle of the night to come to his room in the ICU because the doctor promised she’d send for me if things got scary; rushing down the hall to see doctors and interns and nurses huddled around him as his pediatrician struggles to re-insert a breathing tube in his constricted airway. calling out to him, telling him i’m there as i hear the panic in his gasps for air. 17 years in, and my body is still on high alert; listening through sleep for the sounds of jack in distress. they come more seldom now; there are nights that i sleep soundly until 5:15am and then bite back panic that maybe i missed something, forcing my breath to be calm and slow as i make my way to his room with his morning meds and food, telling myself that he’s fine, but checking to make sure he’s really breathing when i get there.
it's not all torture; in general, jack is a very healthy guy. it's just that when stuff hits him, it hits him hard. we take for granted the ability to move, and movement is necessary to stimulate the immune system, or the digestive system. our whole physical "system" is built on a foundation of movement-- and jack's body doesn't move the way most do. this complicates things in ways that can be a sneaky surprise sometimes. you see, i know all too well that healthy one day can mean gone the next. jack has lost more that one friend with similar challenges to him. getting the call or reading the news devastates me every time. i know that many folk with cerebral palsy live into late adulthood quite happily, but not all of them do. i can’t help but wonder how many days i will have with my beautiful boy, can’t help remembering that each birthday may be the last one.
this is heavy knowing, for sure. but it’s also this knowing that forces me to appreciate every single moment— even the rough ones. every moment fighting the good fight, showing up for my teacher, working to provide him with the opportunity to express himself or to feel joy, each of these moments feeds my soul while i attempt to provide for his. who knows who i might have been if jack hadn’t entered my life? i was never a bad person, but i wouldn’t have known the depth of my ability to love, and i doubt i’d have appreciated the simplicity of love and joy that is all around us. this 17-years-and-counting marathon of love and struggle have made my life rich beyond compare, and i am grateful for each breath that moves through my boy. every moment is a gift, and i am humbled to receive it.
