Here's the thing about being a parent to a son or daughter who is totally dependent - as you get older, you feel more vulnerable, not less. You begin to give over responsibility for care to others... doctors who are no longer paediatricians, but adult physicians, carers, social workers, pharmacists, agency coordinators, and therapists. All the players in the adult world of care are new because your child has graduated to a new system of care. Like parents of children on their first day of high school, we stand by, not sure of our place - we step forward and then back. We say a prayer of grateful thanks to the Gods who took the burden of care from our shoulders and then we worry and worry again.
Yesterday I brought Nicholas shopping for new summer clothes. We have an invitation to dinner on Sunday night - one of our neighbours has a daughter who is Nick's age and the two were at school together when they were young. Eleni is now studying towards a Master's degree in Disability Studies - an academic route that she credits to her formative friendship with Nick. We look forward to sharing dinner and memories on Sunday night.
The van where Nick lives is broken, so we will provide transportation on Sunday and also today when we visit the hospital for a pain pump refill. At today's appointment, we will continue working with our wonderful pain doctor to find funding solutions for the medication in the pump. On our single pension, it is unaffordable long-term.
Funny how our worries change over time. When Nicholas was little, we worried constantly, "What if he dies?". Then as he survived against all odds, the worry transformed into "What if he lives?". Last night, I woke at 2:38am only to lie awake thinking "What if we die?".
Small things and big things that break or break down are the stuff of daily life. But changing roles from being the sole and full-time carer for someone completely dependent is very difficult. And even small things breaking can feel like terrible storm clouds looming. My mother is still in the hospital, today we have a pain appointment for Nick and I don't trust the fates. Today, I am a mother/daughter on guard.