Why We Raise Our Voices

Jodi Shenal
I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabiliti...

No matter where you are in the world, you’ve seen news regarding funding cuts that will soon adversely affect healthcare for Americans. Millions of Americans.
As the mother of a child having multiple disabilities and complex medical needs, relying on the very program being slashed, I’m worried.
Many of us are extremely concerned, and with good reason.
Medicaid programs provide medical equipment, mobility aids, communication devices, incontinence supplies, and life-saving medications for our vulnerable children.
Wheelchairs, suction machines, pulse oximeter machines for monitoring seizures…
Orthotic leg braces, walkers, seating options, respite care for caregivers…
Specialist visits, assessments, treatment options…
Physical Therapy, Speech Therapy, Occupational Therapy, Personal Care Aids…
All the things that make life easier for our children and enhance their quality of life could be at stake. Services that make the world more accessible to them could be on the chopping block.
Parents like me are voicing our concerns, LOUDLY, as we are fearful about the uncertainty of their futures.
Our apprehension is valid.
Please don’t tell us that we’re overreacting or that we need to calm down. Please don’t tell us to be quiet, or to just “wait and see” what happens. If there’s even a remote chance that any of the vital services keeping our children alive, healthy, living in their own homes, and being as independent as possible are at risk, we won’t be silent.
WE CAN’T.
If we don’t act as loud advocates for them, then who will?
Our children are some of society’s most vulnerable individuals. They also happen to make this world a much brighter place, just by being in it. They are pure. They are light, radiating joy onto the rest of us. They make us better, while showing us who we were meant to be. They teach us what’s most important and what unconditional love is all about.
It’s our job, as their parents and caregivers, to speak up and speak out on their behalf.
No one knows exactly how these changes and cuts in funding will trickle down and affect our families. There is no crystal ball; there are no guarantees. So, in the meantime, we’ll proactively research, share legitimate information, write letters and make phone calls.
We’ll continue to raise our voices for them. We’re far from novices at doing so. It’s ingrained in us to be boisterous about their care, because they are worth it.
They matter.