“God never ends anything on a negative; God always ends on a positive.” ~Edwin Louis Cole
The title of this post is kind of funny (no, not “ha ha” funny), a quote coming from the founder of the Christian Men’s Network who died with cancer and a broken back. I would say that … well … yeah, God does end some things on a negative.
Speaking of negatives …
I am going to be interviewed in a week or so about caregiving and parenting of the disabled. I will let you know about it if and when it is posted on line. As the interviewer and I were interacting the other day, I offered a list of topics that I can get “passionate” about. The list just flowed without much thought:
Just for planting ideas, hot topics would include (in order of popping into my small mind): forced testing (No Child Left Behind, state school tests), acceptance of father caring for teenage daughter (bathing, changing – very big problem at times), progress with switches (“she hit the switch x times correctly”) (that’s a biggie), Ashley (I am equivalent to her father), looking for my Queen, filicide-suicide, idiotic laws (where Pearlsky has fewer rights than others, why it is illegal for me to buy parts to repair her wheelchair, …), having your daughter molested at school (I will tear up, sorry), or simply living with the fact that this population typically dies at night (how well would you sleep? How would you look forward to waking up?) The school advocacy I am now doing does cover some of these topics and are also on the table.
This morning I thought about that list. The only positive item is the “looking for my Queen” remark because just about all the women I have met since my divorce I have met via Pearlsky in one way or another. But why are there not other positive things I get passionate about (concerning caregiving, Pearlsky, etc.)?
Sure, I can speak about how Pearlsky has taught me about unconditional love (nah, that was my mother), or how Pearlsky has taught me and others empathy (no, most still have no clue what that is), or how … ummmm … damn. Has she made me a better person? No clue who I would have been otherwise.
I want to hand the interviewer a list of positive things I can speak passionately about concerning caregiving of the severely disabled.
What’s on your list? Maybe I can cheat.
I grew up in Queens. I have lived with Queens. I love “We Will Rock You.” But my Queen? Six miles away? Sixty miles away? Six hundred? Yet my princess is my life …
Now about that list … any help? (I lost your attention, didn’t I?)
Positive changes in my life:
Learning to live in the moment and learning to be present.
My son’s achievements are his and not mine – and yet I savor them more.
Not giving a rats ass about what anyone else thinks about me, especially when I am advocating for my son. It is very freeing. (Ok, so I didn’t give a rats ass before but for some reason it is freeing now.)
Hope those help – Sadly, I have no wise words on finding a Queen. I was half way through my first date with my husband before I realized it was a date and not two friends having dinner.
Because of my disabled son Zac, I have met some wonderful people that I otherwise would never have met. It is a separate community within the greater community, and I am constantly surprised at how interconnected everyone is (i.e. it’s a small world!).
Do you ever treat the people who work with your daughter with respect? You seem so angry and bitter all the time.