I’m smiling but I feel like my heart has broken in a million pieces. I am tired of fighting and advocating for basic HUMAN rights for my son to attend school SAFELY.

For months I’ve advocated Noah’s care plan be reinstated. The rule was that if a child hadn’t had a seizure in a year they no longer had a care plan, rescue meds at school or EAs trained.

If he has a seizure they are to call me and 911. If I’m not within three minutes of him he won’t get rescue and will either continue to seize or come out of it on his own (rarely happens).

Because even if ambulance arrive within three minutes, most do not carry midazolam onboard (only ALS ambulance do and there are very few).

Today I learn that per direction from PHSA (Provincial Health Services Authority), the Ministry of Health, and the Ministry of Education … Nursing Support Services will not be able to delegate seizure rescue medication at this time.”

This directive is irrespective of the time since the last seizure.”

Your child, my child could be having prolonged seizures every day and they will do nothing to help.

To wait until the start of school to remove this program for all children in BC is disgusting.

Some have already sent nurses to train EAs.

All of us rely on these life saving programs.

Even if there is another program in the works (I hope to God there is), why would they remove it before an alternative is in place?

I want to curl up into a ball and pretend this so called inclusive society gives a flying fuck about my son and all other kids that don’t fit into their perfect mold. But yeah let’s fundraise for more play structures that don’t accommodate everyone.

Perhaps some of the $7.3 million being given to our district can be used towards hiring nurses for each school.

I am angry. I want to give up. But even more than that I want change and I won’t stop until I get it.

#sturgewebersyndrome #bethechange #thesystemisbroken #advocatelikeamother #fightforinclusivity #humanrights #notgivingup #seizures #makeitmakesense