I just finished filling out a volunteer application to St. Mary's Home for Disabled Children , something I feel heart-led to do, have been seriously contemplating for some time, and hope to be able to include Brayden as well (otherwise, it won't be possible). So, tonight I took the first step.
When Brayden was born, the option of him going to one of these homes for disabled children was presented to me, and I remember how it sickened me. I know that most of the time, these children receive the best care available and the families often remain very deeply involved... but it wasn't an option for me. I was most certainly scared out of my mind to take him home, scared senseless to leave the hospital (even stayed an extra 2 days because I was scared)... but I found the support and guidance I needed to do it. Some families do not have that, or simply are not able to provide the care needed for various reasons. It is hard, I do not blame them and I sympathize with them of what a difficult decision they must have felt faced with... but these children are so amazing to me, and I look forward to the opportunity of being able to spend my days with some of them.
I actually first stumbled upon this place when I was on my way to pick up a new strap for Brayden's glasses from his new ophthalmologist a few weeks ago. I felt that sickening feeling again, just reading the words on the sign as I turned around in the parking lot... but, the building, it wasn't what I expected it to look like. I'm not sure why, but I expected a dark building... perhaps a kin to a scary movie, insane asylum looking building? For some reason, since that day, this desire to visit has been top of mind... and the fact that it has been mentioned to me from many angles, and many people, makes me wonder if I'm being directed to do so... led to spend my time there?!
I had to do more research to ensure I wouldn't go there and be devastated by sadness. Would these children be possessing of stories of abandonment by families who did not want them? Would they be adequately cared for and interacted with, lying in bed alone or sitting in their wheelchair in a corner unattended? How would my presence even be beneficial to them?
There are 4 physical therapists, and 5 physical therapy assistants providing services daily. They receive in home clinical care by registered medical professionals, and are regularly evaluated by a pediatrician. Occupational therapy is also provided, along with routine nursing services. Some of the children leave and attend school in the Norfolk public school system, could be some of Brayden's classmates in the months to come, while others receive home school services. They are also active in recreation, with activities to promote social skills and enhance their capabilities. They receive constant care and attention... even with a barber/beauty shop and personal dentist, hydrotherapy pool, and adaptive playground on the premises!! I do not sense the possibility of sadness in days there, less than 20% of the residents are under care of Social Services and family involvement varies but does exist on different levels depending on circumstances.
So, application is filled out... in the hopes that Brayden and I are able to both visit and volunteer our time with the children there. Brayden loves to be surrounded by others, and being surrounded by others who he shares disABILITIES with would be beneficial for us both. After speaking with his neurologist Dr. Toor, who is very involved in the care of children at St. Mary's, and learning that there is actually a child with hydranencephaly who resides there currently, makes it seem like fate. Not to mention, Brayden's new pediatrician Dr. Toland is very involved... not only involved but the Medical Director for the home. Every aspect of our recent days have seemingly directed us back to a vision of St. Mary's.
And one more quick quip before I wrap this rambling up, about this "medically fragile" label I have found myself using most recently, well mostly the fragile part is what has be pondering the phrase. The more I think about this label, the more it doesn't make sense... perhaps it does with the word medically in front of it. Every child I know that is deemed, "medically fragile" is one of the strongest children on the planet. Most have no clue as to the severity of their condition, or some do, but all live every single day defying odds, overcoming obstacles, some living in pain or discomfort, and yet smiling all the way... far from fragile they are!! If only we could all live this life in a beautiful sense of bliss...
“Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think." ~Christopher Robin to Pooh by A.A. Milne