I suppose I never really believed that Nicholas could live apart from us – that he could feel truly safe and happy with his caregivers fussing over his tube feeds, multiple medications and his endless appetite for exploring sports and technology. But, I finally accept that Nick IS happy. He feels safe… until he is ill. That’s the only time when he still wants me and only me. Oh, and he still wants Dad for cash and hockey talk.
This new state of affairs – one which our whole family has worked so hard to create – is … strange and even slightly disquieting.
I remember seeing the film “Awakenings” a story of catatonic patients who ‘wake up’ after being treated with L-Dopa, a form of dopamine, which is sometimes used in the treatment of Parkinson’s disease. Based on a true story and originally written by the neurologist Oliver Sacks, I was especially moved by the subplot involving one patient whose character is played by the actor, Robert De Niro. De Niro's character has not spoken or communicated at all in many years, yet every day his mother visits, quietly telling him the neighborhood news and arranging his pillows. She is mystified when her beloved son wakes up. He wants to go dancing, to tour the city, to see women his own age…. all without the company of his mother. So, when the dopamine mysteriously stops working and De Niro’s character sinks back into the oblivion of catatonia, his mother returns to his bedside and sings gently to him, stroking his head. This is a woman who has given her entire adult life to looking after her son. She has ‘come to grips’ with a certain, predictable reality. She does not know what to do when that reality changes into another that has no place for her. In the instant when the ‘awakened’ Di Nero rejects his mother, we see her recoil, appalled suddenly at the meaningless of her life. And when De Niro once again falls into his permanent stupor, we see his mother sigh softly with relief as she returns to her caring role.
Make no mistake, this letting go business is hard going for mothers and fathers. It is bittersweet to see any child grow up, but doubly so when vulnerable sons and daughters leave our care to depend on others who do not adore them as we do. But I know that young arms lift more surely than old arms. Young bodies can stay awake to monitor respiration overnight. And Nicholas has learned these lessons. He knows, as we do, that growing up is natural. It is natural too, to seek out like-minded friends/caregivers who are strong in body, soul and sense of humor. Nicholas has not stopped loving us, but he has started trusting others to keep him safe and who can create the circumstances for a rich life - a rich life that will be sustained after we die.
Life is a funny old thing. Now that my son is more or less settled (until the next crisis, at least), my Mom needs me more. The old saying goes, “Where there’s life, there’s love”. I might add, “and where there’s love, there is caregiving.” I don’t expect that I will ever NOT be caring for someone in my life because I am blessed with many loving relationships. I want my children to grow up and I want to discover new ways of caring for them. I want to discover new dimensions of my mother through our changing roles. It’s a push-pull process, this growing up, growing out and growing into… but it is all alright as long as there is love.