When fog settles deep
With gloom it’s best companion
Forget not your light
The sounds of “The Greatest Showman” reverberated off the windows of the car and her tiny voice sang along. It was one of her new skills and, by far, my favorite–she is a beautiful singer to boot. I took solace in the melody and her voice as we continued on our way to Boston and her speciality appointments.
The juxtaposition of her blossoming development and the fact that we were traveling to urgently scheduled appointments for difficult issues related to her complex medical diagnosis did not elude me. Our life together is this constant dance of uncertainty and fear riding along side simplicity and gratitude.
One of her favorite songs began and she sweetly sang along “never enough, never enough…” My mind wandered and weaved forward to the appointments of the day and the Herculean task ahead and back to the heartbreaking texts I received in the morning from a fellow mother parenting a child affected by the same rare genetic disorder as my daughter. I tuned back in to her singing.
“All the stars we steal from the night sky
Will never be enough, never be enough
Towers of gold are still too little
These hands could hold the world but it’ll
Never be enough, never be enough…
For me, never, never”
As I listened, I landed firmly in that space between fear and gratitude. The space is the vacuous home of “never enough.” It is the stark reality of my life raising a child with a rare genetic disorder and extraordinary need. All the moments we stole that we were never meant to have, all the money it took, all the change we made in this world to make it a better, more accepting place for her will never be enough for my sweet child.
It will never be enough to delve deep into her genome and repair the small deletion that sentenced her to a lifetime of complex and immense struggle. A mother’s number one job is to fix all that ails one’s child and I cannot. I will never be enough. We are further stuck within a medical system that is woefully unequipped to handle her needs now and in the future.
Nevertheless, we drive on–this time to another appointment for a Hail Mary treatment. There will be many more. The future will surely hold more therapies, new medications, treatments, clinical trials, and we will weigh the pros and cons of all. We will never stop because she is more than enough.
The song shuffled and she began to belt out a new tune. I was jolted out of my free fall. She really is the sweetest, hardest working, most glorious miracle; she is more than enough. She is love and my love for her is indescribable. Perhaps that is enough.
Yes, perhaps love is enough. It is what I will fill the space between fear and gratitude. I will fill “never enough” with love.
Sun struggles through gray
Light wrestles prevading gloom
Day breaks nevertheless
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.
Winter’s night looms long
Like the day’s pregnant shadow
Birthing dream or dread
Have you ever felt on the edge? A razor’s width away from the world crushing you? Have you ever thought maybe you should let it? Have you ever wondered what would happened if you stopped holding it up, like enduring Atlas, and let the sky fall?
Of course you have, because you are like me–blessed and burdened by circumstance; you are a parent of the extraordinary. The weight is unimaginable and the task so tiring; for who can hold up the world and the sky?
Nevertheless, we persist.
What is the alternative? For the sky to come crashing down?
It does that anyway; it falls with every crisis, every diagnosis, every meltdown, every school meeting, every stare, every medication failure. And, that is why it is our job to hold it up. It is our job to make sense of it all every time the earth shakes and another crisis rips the heavens from the firmament. It is our job to piece it back together–azure patch dotted by fluffy white, patent-leather black pin studded with shiny bright diamonds.
We must make sense of it for our blessed and burdened, extraordinary pieces of heart walking around outside our chests. For, if we didn’t there would be no understanding, no up or down, no hope. We would be crushed by nature.
Who makes sense of it for us–holding the earth and the sky, picking up the pieces, placing the stars back one by one? Who makes sense of the nonsensical? Who helps carry crushing burden when we fear it will flatten us? When we are weary and we wish it to?
I do. We do. We shoulder our burdens together because we are the few who can understand the job–the immense burden and blessing. We link arms and hunch shoulders to disperse the weight as we speak of the crises, and diagnoses, the meltdowns, and meetings, the stares, and medications. We stoop low and scoop the scattered stars and shattered blue canvas of sky the next time it comes tumbling down and help to paste it back up again–and again, and again.
Nevertheless, we persist.