The Real Deal (A very long guest post by Debbie Downer)
Due to recent set backs the light at the end of the tunnel has been turned off.
I haven’t posted much in the last year.
This blogging thing is sometimes tricky. I want to write an honest account of raising Nani, but sometimes what I feel pressed to post ain’t always pretty. I struggle with that.
One, because being misunderstood has been one of the most difficult things I’ve endured these 32 years. Two, because I’ve been told by several moms who are a season or two behind me that my blog gives them hope that they can keep going, that their lives can and will contain joy even with all the hard times. And I don’t want to discourage them. Most of the time I’m laughing until I cry, but sometimes I’m just crying and trying hard to not be crying in my beer, if you get my drift.
2014 was that kind of year. In December of 2013, I came to the quite sudden realization that I am almost spent. I don’t have the emotional, mental or physical capacity to care full-time for Nani for much longer. I’ve always wanted her to live with us, with her family, for as long as possible. I adopted an “I’ll do it or die trying” attitude. Until the day I thought about what that would mean for Nani. If I die trying she loses her home and her mother. If I die trying then I don’t get to design and plan that next phase. It would be terrifically unfair to all 3 of my daughters. Frank swears he’d miss me, too.
But the question of timing has been a kicker. We wanted to do it for as long as possible, to give her this highest quality of life for every day that we could, without putting her at risk of an unplanned and unprepared for move. As Frank and I approach 60 we are feeling that shoe that is waiting to drop. We are just one health crisis away from this all going to hell in a hand basket. (Seems I’m trying to get as many Texas red-neck clichés in this piece as possible. Unfortunately, it’s the way I talk. Don’t be a hater.)
Then one December night I felt that release. I knew I had done all I could. It was time and I had peace about that.
Over the years, we have studied and thought about the best case scenarios for Nani. Frankly, it seemed unlikely that we could really have all the things on our list. But then an answer appeared on the horizon and in February 2014 we found a solution better than we could have hoped or dreamed.
So what was on the list? An organization specializing in Autism. A non-profit with a proven track record. A relatively low turn over rate for direct care staff. We wanted input on her physical living environment. Natural, but not bright light, a shady yard, open floor plan, a lovely, safe neighborhood. We wanted an organization that would not move her from home to home. An organization well versed in behavior management and who would train ALL their staff in it. Exceptional Day programs. Confidence that when we are gone this quality life will continue, and her sisters can focus on maintaining their relationship with Nani, and not having to be quite so on guard about her day-to-day care.
We hit the jackpot!
For seven months we prepared and worked with this provider ironing out the details. The actual move date was fluid as there were many things that needed to be put in place. It was always a few weeks or a couple of months away. That was difficult, an emotional roller coaster. I ran between excitement for Nani’s new life, and not being able to picture how I would make it through letting go, knowing that I could not explain it to her, knowing she would be scared and traumatized. This was all made more difficult because we were not replacing attendants as we lost them due to the close proximity of the move. By mid-September we were exhausted physically and emotionally.
And then it all fell apart. The organization sent us a letter saying they weren’t opening a home under Nani’s funding stream after all.
Almost 5 months later we are still extremely short staffed. We are tired. Some days I struggle with hopelessness. Some days I’m OK. Some days I’m just grateful for the extra time with her here. Some days I’m angry. Some days I refuse to speak to God. Some days the abyss of depression yawns pretty big.
I do know I have much to be grateful for. If I were a single parent and had to support myself, I would not have the luxury of waiting for the right place, and when I do find it the funding is there.
But hope deferred does indeed make the heart sick. (And sleep deprivation will do a number on you, too.)
It’s not the first time I’ve been here. My head knows this will pass. If you are questioning my faith at this moment, don’t feel bad, I am too. I know that had I lived in biblical times there would not be a book of the Bible named Donna.
And that’s the real deal.