Friday, January 28, 2011

My Plea

As I have been listening to the public give testimony to JFAC this morning on the cuts to various Health & Welfare and Medicaid programs, I realize that I have a responsibility to speak now. I am in the process of writing something to be shared with the members of the JFAC committee via email. Once complete, I will post it here. In the meantime, I urge you to read the posts I have previously written on issues such as those being discussed in the hearing room this morning. They include:
Because I think one post in particular speaks well to my experience and background with the developmentally disabled, I re-post "Home" below.
"When I speak of home, I speak of the place where--in default of a better--those I love are gathered together; and if that place were a gypsy's tent, or a barn, I should call it by the same good name notwithstanding."
-- Charles Dickens, Nicholas Nickleby


I was ten years old when my family began construction on an assisted living facility for the developmentally disabled. For the better part of six years, it is where I called home and it never seemed out of the ordinary to me that I was growing up in such surroundings. My younger brother, who was three when we began construction, couldn't comprehend some years later when he first started visiting the homes of his friends why all kids didn't have disabled people living with them. With two siblings of our own who are developmentally disabled, I don't think either of us ever gave our living arrangement during those six years a second thought.

After two years of living in an apartment I shared with at times up to five other girls, I felt that I had tasted the college living experience and it wasn't for me. The summer between my freshman and sophomore years of college, my roommates all returned to their homes in the Mini-Cassia area and I remained in our three bedroom apartment without air conditioning and without cable. It was an incredibly long summer broken up only by the trip I took to Dallas that July. When my sophomore year ended and my roommates, none of which were the same roommates as the year before, returned home for the summer, I was determined to find somewhere else to live so I didn't have to endure another summer in that apartment alone. Looking back at that decision, I realize the change that came in my living arrangements that summer was rather drastic.

That summer I could have moved in with a Kenyan friend of mine in the cutest little purple house in all of Pocatello or I could have taken a house sitting job that summer for a professor who was leaving to visit family in England. The purple house had one major hangup--my Kenyan friend had just brought her mother to the States and her mother spoke zero English. Since we would have been home a great deal with that language barrier, I was worried about how that might work out. The house sitting gig brought its own obstacle--cats. The house owners had six cats and I am allergic. Just when I thought I was going to spend another summer in an apartment by myself, I was offered a job as house parent at a local assisted living facility for the developmentally disabled. I can't remember the details, but I think I was asked to take the job on a Friday, moved in on a Wednesday and took a summer course final exam the next day. If I had any reservations about the job, I certainly didn't have the time to think about them.

That was four years ago. In taking this job, I inherited all sorts of things. When I moved in, I didn't even own a bed. I inherited a chair, a book shelf, a bed frame, a dresser in need of some TLC, a couch and a desk. I've added six book shelves and two night stands to that list as well as more books than I care to mention. However, what I've inherited that has turned out to be the greatest blessing is this amazing family. When I took this job I immediately inherited fourteen siblings.

I don't know what other people in my position would consider these living arrangements. Maybe they'd just consider it fourteen roommates? For me it is truly a family. We don't always get along, especially when one TV or another is too loud or the washing machine is about to walk off because whatever I tossed in there caused it to be off balance and everyone in the entire house can hear it. We may not always get along, but there is no question that we love each other like siblings. At first it was simply the fourteen of them and the one of me, but over time they've let me be just another one of the clan. They want to know if I'm sick, if I'm going to work, when I'll be home, if I'm joining them for dinner and every other personal thing they don't even hesitate to ask. And over time, I've come to feel exactly as attached to them as they are to me. I know when they're sick, when they're fighting, if they've gone to visit friends or family, and especially if there is a birthday to celebrate (not because I remember birthdays with any regularity, but because a birthday is well-talked about for days, even weeks in advance).

All of this is to say that we're a family. A rather large and sometimes dysfunctional family, but a family that loves each other nonetheless. And this family just lost a dearly loved member of it.

Yesterday morning one of the residents passed away after a trip to the emergency room in an ambulance. If there is anything more difficult than losing a family member, it's having to tell the other family members. In this case, the difficulty lies in the inability of some of the residents to even comprehend illness and death. And I say 'lies' because there is no past tense around here. We are still having to explain that he isn't coming home again and we are still giving hugs and dealing with sudden outbursts of tears. I suspect we will be for some time. Perhaps in having to be pulled together for the sake of those I live with, I didn't let yesterday's events set in. It wasn't until this morning when I woke at the usual time that I would get up with this particular resident that it really hit me. And tonight as the ten o'clock hour approaches, when I become the responsible staff person, it crossed my mind that instead of being responsible for fourteen of my closest friends, tonight there will just be thirteen. Thirteen people that I admire and love; thirteen people that mean just a bit more to me today than they did yesterday.

I have never lost a family member that I had been living with. This is as new to me as it is to everyone else under this roof. And as non-traditional as we are, we are still a family dealing with this loss in ways only families do--with each other. The entire experience is proving to be a chance to learn and grow for me, but also in this unfortunate situation I have been reminded that a family can be of your making. I'm blessed to have this family that I come home to every day, that loves me for who I am and nothing changes that. We all can miss the forest for the trees and right now I am able to see what is.

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