When fog settles deep
With gloom it’s best companion
Forget not your light
When fog settles deep
With gloom it’s best companion
Forget not your light
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.
Meditation on Despair:
You are like a cold wind that blows through and rustles the last of the autumn leaves that cling helpless on the branches and herald the arrival of winter. Winter, the season of death and dormancy, is your friend. You seep through the cracks in our foundations like an icy chill. Perhaps like water, soft yet strong and forceful, ready to freeze as the hopelessness of winter sets in and drive those foundational crevices into deep canyons of pathos. And, as the sadness grows you feed on it; you grow ever stronger until your insidious presence can no longer be ignored. Foundations of joy, happiness, love, and hope crumble at your feet until all that is left is the gaping abyss of you–despair and, your favorite of partners, hopelessness. But, perhaps, not all that much unlike the cold winds that harken the winter white, you too shall blow past in turn and the world will bloom around you once again. That’s the thing with seasons–they change; and foundations–they may crumble and fall but they can be rebuilt. You too are important just as winter is to the world. But you are only to be a season for which joy and hope can return once again.
Words, to me, are like water; they are life-giving and essential. I drink them in deep to make sense of the world with in me and around me. Gentle like the trickle of a playful stream and powerful like the torrent of crashing waves in a violent storm through rain, snow or ice, water like words hold magic in the ability to take many forms. Words matter and defining and clarifying why within our great lexicon is especially important when raising children with special needs.
One of my greatest personal griefs as a mother is the loss of connection with my daughter over my love of words. Language for her is foreign. The nuances of language are dull and imperceptible; it is like trying to discern stars in the orange-brown of the light polluted sky—it all becomes muddy. To me words are sharp and precise with a woven tapestry that is like a picturesque view of the Milky Way through the most detailed of telescopes. Nevertheless, words matter and there are certain lessons nuances that must be not only be taught explicitly through definition but also breathed into life and experience for her and all our benefit over and over again.
There is a difference between secret and private.
Foundationally and fundamentally this distinction must be infused in the fabric not only of our lexicon but of our lives; it is important for everyone and it is exquisitely so for us. The difference is far reaching with impact both practical and abstract.
By definition, a secret is never meant to be shared with others; it is the burden of one or a very selective few to carry. Whereas, private is something belonging to someone or a group that is chosen not to be shared with others.
Even for a wordsmith, this nuance can entangle. Here is why it matters: our struggles are not a secret; they are private and that means we choose who, when, where, and how we share them because they are shareable–meant to be seen and carried by others. Secrets are the breeding ground of shame and the enemy of vulnerability. Queue the Queen, Brené Brown.
Special needs, mental illness, significant sickness and the like have been relegated to the dark shadows of society–institutions, the homeless we walk by trying not to make eye contact, religious charities, etc. If one had a family member with epilepsy, autism, intellectual disability, rare disease, then it was not meant to be known; it was a secret and with that secret carried great shame.
We have made great progress in the past hundred years in our society and we are still living in a society that treats disability as if it is a secret. We speak of disability in ablest terms: overcoming, beating, fighting, etc. It is as though we are constantly expecting those living with disability and their able bodied family to beat back that which is integrally a part of them and the fabric of their lives, of their family dynamic, into the shadow; to make it secret again.
Our struggles are not secret they are private. They belong to us and we choose who we honor with their sharing. We do so in a safe and planned manner that shares what we want when we want. In doing so I commit to sharing what is mine. That means I share my experience as a mother of children with Tuberous Sclerosis Complex (TSC), autism, epilepsy, cortical visual impairment, dyslexia, AHDH, and more. It means when I give pieces of my children away to others I ask myself first would I want this told about me; I ask this not because there is something to be ashamed of but because I respect their privacy and their choices. And, in asking myself these questions I am teaching them the meaning of privacy.
We must speak this to life; if we do not then it becomes secret. For a child whose neurology does not afford them the regulation to keep their experiences internal in public (read: meltdowns), it is vital to empower them with the understanding, empathy, and deep compassion that it is okay, more than okay, to be seen during struggle. We all struggle and that it is not secret. Their struggles, just because they may be more intense, loud, violent, scary, public, are not secret or more shameful than others. This also means we as parents must work to afford our children as much privacy as they want and makes them feel comfortable.
The lesson of secrecy versus privacy breathes agency to life. The impact is far reaching. When a child knows that their body is private not secret they also know no one should transgress against it. This is vitally important for children with special needs who are more vulnerable to abuse and potential sexual predators. For a child with autism who has hard and fast, black and white rules for language and living it is life saving to teach that secrets are never ok and private and privacy is a right that is all theirs.
The life giving water of words suits me. It is a babbling brook that feeds my family and protects them. It gives them shelter and private place to pour out their deepest selves.