About Mighty Shaw
Bee Mighty began after our second son, Shaw, was born 13 weeks prematurely, weighing only two pounds. We spent his first 122 days in Novant’s Neonatal Intensive Care Unit (NICU). Shaw’s extreme prematurely caused a stroke at birth resulting in hydrocephalous, requiring daily spinal taps and multiple brain surgeries. He ultimately received a device inserted permanently in his brain. From multiple intubations in the NICU, Shaw has Narrow Airway Disease, causing years of hospitalizations, clinics, therapies and additional surgeries. During those months we were in the NICU, Shaw had numerous bouts of sepsis, hearing loss, failure to thrive, multiple bronchoscopies and days we truly just did not know if he was going to survive.
Shaw is Mighty.
To keep our friends and family up to date with the daily fluctuations of Shaw’s journey, including his unexpected arrival and years following the NICU, we kept a caring bridge site, titled Mighty Shaw: www.mightyshaw.blogspot.com, which later became the namesake of our Foundation.
Our family spent the first year in a medical fog, adapting to life with a medically-fragile child, coupled with a busy toddler. We remained in isolation, avoiding public places and visitors, managing RSV season with a snotty toddler. We washed our hands until they bled and washed them again. Years later, you will find hand sanitizer in every room and car door because we knew a common cold could mean death for our son. We became experts on medical equipment and could clear the room at the ding of a microwave, easily mistaken for the Apnea alarm. All the while, simultaneously scheduling an obscene amount of doctor appointments, endless tests and receiving disappointing diagnosis, including that our son may not walk or talk.
From day one, we accepted that as parents we would need to spend an exorbitant about of time, energy, tenacity and dedication to be an advocate for our children – both our son needing additional services and our son needing his parents. We began down the unmarked road of social services and Medicaid, insurance and referrals. We longed for families that could relate or knew where to turn, but often found uncharted territory.
Insurance surprised me the most. We were quickly disqualified for Medicaid or SSI/Social Security Disability, even as a one-income household. We heard from various doctors that our son would need as many as five therapies each week, if we ever hoped to see some progress in his development – of course, every doctor reiterated that there was no guarantee.
For the first time ever, we researched our medical coverage for therapies for our children. United Healthcare covered 20 therapy appointments…. for the year. When I asked our doctors how families afford the recommended therapies, I was told again and again, “Parents just have to choose.”
Even with our private insurance, we spent thousands of dollars out-of-pocket (year over year) for critical therapy for our son’s development. How could parents be forced to choose one therapy over another? Our son needed Feeding Therapy to process solids, having been tube fed for four months. He needed Speech Therapy twice a week because he couldn’t hear. He needed Physical Therapy twice a week to optimize his chance to crawl and walk and later Occupational Therapy to strengthen his fine motor skills. How could families possibly choose?
Our family began Bee Mighty to alleviate the financial burden of additional therapeutic and equipment needs following a NICU stay. By providing timely financial support (access to therapies not supported by insurance, subsidizing out-of-pocket therapy copays and expenses, fund medical equipment like wheelchairs, helmets and adaptive bicycles), Bee Mighty hopes to maximize each NICU graduate’s potential and quality of life. Bee Mighty funds directly impact the lives of the children that have already endured many challenges since birth and optimizes the possibilities for their future.
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