Wednesday, November 3, 2010


This week, I completed the application form for another year of funding for Special Services at Home.  The funding pays for the dedicated caregivers who come to spend time with Abby.  Like so much of the paperwork, the application must be completed each year to show continued need.  There are problems with the system.  Every year, hundreds of families are told that they qualify, but there is no funding left.  They are on a waiting lists.  There are all kinds of waiting lists for funding.  The waiting lists for adult services are even larger - more people and longer waits.

Abby has yet to qualify for the maximum yearly allowance of funding.  Each year I request the maximum funding, I must state my case on the application form, knowing full well that the best I can hope for is to get her on some waiting list.  I have learned how the system works best.  I put aside my motherly pride and I concentrate on every single bit of weakness and need she has.  I paint the most devastating picture possible.  It's not hard to do when you're dealing with Rett syndrome, but it leaves me wallowing in self pity when I'm finished two hours later.  One of these years, I will follow my urge to write a simple sentence across the front of the form: "I beseech you to come and spend 24 hours caring for my child."

So, I sent the envelope off this week - still kicking myself that I forgot to explain how long it takes to feed Abby breakfast each morning - and I'm working my way back to a more positive, or at least balanced perspective of our lives with Abby.  She is still having good days and bad days, but when she's happy, we're all happy.  We are still tweaking the meds to see what works best for Abby.  Abby missed the Hallowe'en festivities because she was having a bad day and needed a drug-induced sleep.  But she doesn't define her happiness by our cultural expectations at all.  She woke up happy to be able to spend time with her family and listen to some good music.  There's always something to learn from her.

Last year, I wrote an article about the importance of respite care for the long-term health of families like ours.  It's important for decision-makers to understand the value of that funding.  We are grateful for what we have and even for the waiting lists.  There are people in the world who could only dream of this much support.

No comments: