I wrote this essay on Facebook in late March 2019, after spending a week on Capitol Hill, advocating for research funding for tuberous sclerosis complex -- the disease that has robbed our sweet Mackenzie of a normal life. I've chosen to post it to my blog.
********
My last TSC post for a while.
The upside of spending a week in Washington D.C. with like-minded advocates who understand your journey is indescribable.
But to be successful on the Hill, there is a downside. One has to strip away the smile, the humor, the wall — built brick by brick, in my case for 25+ years — to communicate the horrors of tuberous sclerosis complex. And to share your story, you have to revisit what was stored away many moons ago to protect yourself, your relationships, your family, your mental health.
So today I will look at this photo, shared with legislators, one last time. It was taken when Mackenzie Mudd was age one — one week before her first seizure, when the monster called TSC reared its ugly head. One week and four days before we first heard the words “tuberous sclerosis complex.”
-It was before more than 3,000+ epileptic seizures ripped through her body
-Before 27,400 doses of medication over 25 years sometimes worked to control her symptoms, sometimes not
-Before the drugs wiped our baby out so badly that she’d fall over in fatigue, again and again, face bloody on the floor
-Before 30+ MRIs, CT scans and ultrasounds, most requiring anesthesia for behavior and pinning down her arms and legs for fear of needles and masks
-Before 12 surgeries, holding her hand in pre-op rooms while she cried and looked at us in horror...then, in later years, defeated resignation
-Before the overnight hospital stays and the EEGs with wires all over her head, waiting for seizures to occur so doctors could follow her symptoms...while she hit us and screamed
-Before the stares and comments by strangers in public places
-Before we would cover our bruises from the rages associated with autism
-Before the judgement of whether I was a good or bad mother from people who had no clue
-Before nine years of diapers
-Before marriage counseling
-Before shattered glass and concern over the safety of our younger children
-Before I learned who my friends were
-Before my faith was tested
-Before thousands of tumors grew within her kidneys and lungs and more grew in her brain
-Before her skin was burned purple by lasers again and again to remove facial tumors
-Before sitting on a hospital room floor, holding my knees and rocking back and forth in tears
-Before fighting with insurance companies to cover medications and treatments
-Before learning to advocate aggressively in the school system for our child’s needs
-Before I had to consider a future in which my daughter would never be able to live independently
-Before her younger sisters went off to college and she was left behind
-Before I learned the depths of love
-Before I became a better person
-Before I understood compassion
-Before I came to cherish dedicated doctors and nurses
-Before I understood the gift of a husband who doesn’t leave, despite a 90% divorce rate among special needs parents
-Before I learned the value of special education teachers, therapists and caregivers
-Before I realized that people have their own problems and understandably don’t need to hear about mine
-Before I learned to use dark humor to cover my pain
-Before I started to build a wall
-Before medical progress came, but not enough
-Before I learned there is a tribe of others who walk with me, with whom I can stop being funny if I don’t feel like it and cry about the shit our sweet girl goes through
-Before 27,400 doses of medication over 25 years sometimes worked to control her symptoms, sometimes not
-Before the drugs wiped our baby out so badly that she’d fall over in fatigue, again and again, face bloody on the floor
-Before 30+ MRIs, CT scans and ultrasounds, most requiring anesthesia for behavior and pinning down her arms and legs for fear of needles and masks
-Before 12 surgeries, holding her hand in pre-op rooms while she cried and looked at us in horror...then, in later years, defeated resignation
-Before the overnight hospital stays and the EEGs with wires all over her head, waiting for seizures to occur so doctors could follow her symptoms...while she hit us and screamed
-Before the stares and comments by strangers in public places
-Before we would cover our bruises from the rages associated with autism
-Before the judgement of whether I was a good or bad mother from people who had no clue
-Before nine years of diapers
-Before marriage counseling
-Before shattered glass and concern over the safety of our younger children
-Before I learned who my friends were
-Before my faith was tested
-Before thousands of tumors grew within her kidneys and lungs and more grew in her brain
-Before her skin was burned purple by lasers again and again to remove facial tumors
-Before sitting on a hospital room floor, holding my knees and rocking back and forth in tears
-Before fighting with insurance companies to cover medications and treatments
-Before learning to advocate aggressively in the school system for our child’s needs
-Before I had to consider a future in which my daughter would never be able to live independently
-Before her younger sisters went off to college and she was left behind
-Before I learned the depths of love
-Before I became a better person
-Before I understood compassion
-Before I came to cherish dedicated doctors and nurses
-Before I understood the gift of a husband who doesn’t leave, despite a 90% divorce rate among special needs parents
-Before I learned the value of special education teachers, therapists and caregivers
-Before I realized that people have their own problems and understandably don’t need to hear about mine
-Before I learned to use dark humor to cover my pain
-Before I started to build a wall
-Before medical progress came, but not enough
-Before I learned there is a tribe of others who walk with me, with whom I can stop being funny if I don’t feel like it and cry about the shit our sweet girl goes through
Before this past week, where we joined together to advocate on Capitol Hill. Before 425 meetings to ask for research funding to help us find a cure.
The photo will now be put away, as will the memory of that naive young mom who once propped up her one year old baby for a portrait and told her to smile. Today is a beautiful day, after all...time now to look forward, not backward. Anyone know any good jokes? 💙
No comments:
Post a Comment
Comment here: