Drowning is silent; there is no grand cinematic splash, flail, and scream. True drowning is insidious and deadly. The once confident looking swimmer is suddenly gone with no yell for help and no sign of distress.
I am a fiery, powerhouse mother of two children with disabilities and I feel like I am drowning. My drowning is as silent and insidious as the real thing. My drowning is slow and it looks well groomed and smells of perfume accompanied by bubble bath; it gets to school on time; volunteers for the PTA; then, arrives at home to face the mountain of responsibility and sinks below the surface into the dark depths.
Do not let my functionality fool you; I feel like I am drowning.
I look calm and cool above the surface while my legs frantically kick below to keep me afloat. My legs are tired and cramped. They have been kicking for years–since the day I sat cherry faced (from steroid shots) and smiling at my baby shower pretending to be carrying a healthy infant. No one, save for a select few, knew the baby swimming around in my belly had a body riddled with tumors and would be born with the rare genetic disorder, Tuberous Sclerosis Complex (TSC). I was drowning in grief, in fear, in appointments for myself and my baby; and, I was excited to meet my growing baby, surrounded by friends and family celebrating her. A piece of me slipped below the watery depth that day.
My drowning is piecemeal. It has happened bit by bit over the years. I have lost pieces of myself to the crushing responsibility and lack of resources.
Today I tread tirelessly, a child in each arm, to keep us all above the surface. I feel the tug of riptide–the school calls, the emergencies, the medical crises, the new diagnoses, the day to day battles, the behaviors, the therapies, the endless appointments. It threatens to pull us all under in totality and I tread on because I refuse to let this life claim my family. I am buoyed by my love for them–by our love for each other.
I am tired and I need help; and, I will continue to tread on. You may not know all that is happening below the surface. I look like I can do it all but one cannot tread water indefinitely without support. And this world is just not built to support families like mine–the multitude of need is far reaching. The cost thus far has been high. The truth is below the surface there are pieces of me slipping away bit by bit while I wait for someone, something to help.
Nevertheless there is a bothness to this world that is mysterious. I look the model of strength, calm, cool, collected togetherness while I feel like I am drowning. I am losing pieces of myself bit by bit while I gain new perspectives on this wide and wonderful world I would never be privy to without my beautifully complex children. The love, pride, and joy I hold for my family gives me great strength and requires strength from every fiber of my being. I may feel like I am drowning and I am kept afloat by the hope I hold for our future–no matter how small it may be at any given moment.