I woke this morning with both rage and fear coursing through me. I rarely post personal views and controversial things to my Facebook page, but I realized today that at the very least, being able to verbal vomit may touch just one person and perhaps the world can begin to make changes.
Whenever I rant, I feel as though the pebble being tossed into the lake creates ripples that are endless. Here is my pebble today.
A rare rant from this (mostly peaceful) gal: Have you ever considered what it costs to raise a child with a disability? Not just the financial burden of therapies, co-pays, evaluations, time off work, etc during the childhood years…but the deeper and often forgot about costs that lasts a lifetime; the impact on the relationships to include siblings and partners, the demands of having an adult child who requires as much care a child every. single. day; the housing problem that presents itself as that child becomes an adult; the fear that exists when only one parent remains alive and wondering who will eventually be this adult’s guardian and keeper, the limits of experiencing the second half of life living as a parent–vacations, time for self, retirement planning, the fact that a simple dinner out requires finding someone to ‘hang out’ with this adult, and more.
The list could go on and on…..my rant goes beyond the horror of what is happening in our world around education and disability rights…..it goes deeper into a personal level of seeing that when the small child with a disability becomes an adult, the disability remains. And yet, the lack of services and funding and support for parents living with adults with disabilities is an outrage.
I want more than anything for my adult girl to have her own place space. I bought my home last year with the hope and intent that the detached garage will someday be an amazing space for her to live as an adult, as independently as possible. I pray everyday that my hard work, my tenacity to seek funding, my faith in something much greater will provide me with the path to make this happen.
When I did my CNA practical rounds and I was in a long-term living center and entered a room of a mid-50’s woman clutching her coloring books and her stuffed animals–obviously developmental delayed– my heart broke for the reality of what could happen to my girl.
I ask this: think about the moms and dads out there that have sacrificed and given up their second half of life freedoms and finances for the sake of being dealt the cards they were. Send them a little love and hope that our world someday begins to see the value in providing those who cannot provide for themselves housing and support to live as independently as possible.
Embracing SPIRIT 