Friday, October 25, 2013

Postponed

I must apologize for my flakiness and let you all know I am A-OK. September and October have been lengthy months; they almost feel summer-ish with additional school activities included. I really don’t love summer. I do however look forward to fall soooo, you know expectations and such. Another lovely reminder that parenting continues to bring unexpected challenges and joys no matter how independent they grow.

When I scheduled Painting for Hope in late August, the 500-year flood (and the extra-long school break) had yet to occur. At the present time one of Ava’s school mates remains homeless with no real hope in finding affordable housing anytime soon, they will possibly have to relocate. In addition there are local community fundraisers galore…softball, music concerts, food drives and thankfully the list of events goes on. A teeny bit of me has been thinking since mid-September that the timing for my event wasn’t the best, locally speaking.
But I’m pretty stubborn so I marched on, half-assed. I was picking up the planning pace, overcoming the half-assness when I received an unexpected phone call early in October. It was the county notifying me that Ava’s HCBS secondary insurance waiver was eligible for consideration of extended services. A very pleasant surprise considering the original quoted wait time we were looking at was 4-7 years after Ava was finally diagnosed less than 2-years ago.  THANK YOU AFFORDABLE HEALTH CARE ACT!

They asked to come the next day…

After we went through the couple hour re-evaluation process, I was then given an assignment to get three of Ava’s providers to write a letter that can verify that they have witnessed any level of care she needs to qualify for the extended services. Um, okay. I was also given a document of available extended services with units/rates to guide my budget planning (I’m an accountant so no worries here, I’ll work those numbers and shamelessly beg for reallocations). Information on agencies I could hire was also provided along with encouragement to interview all of them. They asked me for a target date to have services in place by December 1st, the date they anticipate the new waiver being effective.
Honestly, I need the help. Desperately . I haven’t had 24-hours away from both kids at once since I was in New York last March. I also need some time to swallow the fact that getting any time to myself comes with a price. It consists of letting around an additional five (currently) strangers come into my home and all the freakiness that might accompany that, both sides considered. *Help* Keeping the blessing of help on the forefront.

Next up, I was thrown body fluid mishaps, days of them. Everyone, except me had a turn. You know what? I am much better with seizures than body fluids. Various illnesses have been going on for over 3-weeks in this house with a fever/throat/sinus virus now on the table. Apparently the table is a tad filthy.

And you know what? I blame the broken f*cking dishwasher for that ;) We have a new Maytag and we are going on week three of a dysfunctional dishwasher. A control lock button, that we never use, went out and is on back-order (they told me it shipped today). So…dishes, laundry, phone calls, laundry, dishes and more laundry along with obsessive germ elimination took precedence this October.
On Thursday when I had no idea how many confirmed participants I had (lesson learned on the open-ended nature) I decided to postpone until the holidays pass. I am madly in love with my daughter and her cause so I felt it best to use the donated items we have for a future date that I can better tend to.

I am tired. I am in a peculiar place. I have a few upcoming dates with lovely Anchor Mom’s & the Supermom’s to give me a little needed soul food.
I hope you will join us when we reschedule. Happy Halloween parties to you crazy, fun, freaky peeps!

Hope. Love. Cure

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