Sunday, October 26, 2014

It's the seizures, stupid: They make it all look grim

I find C.'s school depressing even on the best of days. Seeing children severely afflicted with disabilities has "Why?" reverberate in my head. I know that their existence can teach others to value good health. In some cases they even inspire people to help, extend kindness, be selfless. Very desirable effects, obviously. But I'm plagued by the nagging question: couldn't  those lofty goals  be achieved through some other, less devastating means?

I can suggest umpteen alternatives myself and I'm not very creative.

Hence, those attacks of angst the moment I cross the school's threshold. And then, for good measure, there are all the upsetting incidentals. Last week, for instance, it was these.

1. The school is blessed with a spectacular therapeutic swimming pool which was funded by charitable donations that the CEO devoted her first years on the job to raising. During its construction, the children received no hydrotherapy. Upon completion, they enjoyed two therapies a week. That number has now been dropped to one. So the pool is often nearly empty during school hours because the CEO has decided that there are insufficient funds to hire more hydrotherapists.

2. On the other hand, the pool is open to the paying public every afternoon, generating income for the school.
The pool during peak morning hydrotherapy hours earlier this month
3. Today I stumbled on this latest display of bootlicking to the donors. On the wall of one of the corridors outside a classroom, donor plaques which have always been there are now framed with strands of cutesy lights. Seems there are ample funds for this sort of nonsense.
Donor plaques, freshly framed with lights
Cannabis Update: We will finish our cannabis supply way before next month's delivery so on Sunday the hubby will drive to another city with C. to pick up two more bottles. Because our license is in C.'s name, the supplier will only transfer the stuff in C.'s presence. Now that it's clear we can't  rely solely on deliveries, we'll apply to get our names listed on the license asap. But that process will take a month, so in the meantime the two-hour  trip with C. is our only option.

As of today, we are at 30 drops/ day of the oil containing 15% CBD and 0.75% THC.  But C. is still having several seizures a day. Here she is at a family gathering in a deep post-ictal.


1 comment:

Elizabeth said...

Many sighs all around.