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I'm really frustrated because not everyone seems to believes that health comes before education

May 3, 2014

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I'm really frustrated because not everyone seems to believes that health comes before education

I'm a little bit upset and I'm not sure who to really direct it at.  I was approached by Gavin's teacher last week and asked if we would be willing to delay Gavin's infusion today so that he could take his OAA (Ohio Academic Achievement) test.

She said it would be difficult for him to make that up.

It was only a 30 question science test and my understanding was that it wouldn't take very long.  When he was done, I would pick him up and we would do his infusion.

I get the impression that Gavin's health issues either aren't understood by his teachers or not taken seriously.  It's most likely a lack of understanding but we've tried to explain this several times now.

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Here's the reality of the situation..

Gavin's health takes priority over his education.. Period. There's no room for negotiation and I made a mistake doing so.

I'm not sure what happened today but Gavin didn't end up getting his infusion until 4pm. My understanding when I agreed to this was that it was going to be a quick test and we would be delayed by 2 hours or so... By the time Gavin finished his test, it didn't make sense to pick him up early because school was almost over and we can't afford to make any more trips than necessary because of the cost of fuel and our very humble budget right now.

When I did pick the boys up, I was already irritated because missing his morning infusion really stresses me out.

One of his teachers told me that Gavin did really good on his test today.  He took his time and made sure he did his very best.  Now I'm really upset because I don't know who to be upset with.

Is it the teachers for not wanting him to make up the test when he returned to school next week? Perhaps I should be frustrated with Gavin because *he took his time*? Gavin *never* takes his time when it comes to tests.  In fact, I've talked many times about how frustrated I was that he rushed through his tests so he could be the first one done.

He picks today, when he's supposed to get a donor immune system infused into his body so he doesn't get sick because he doesn't have an immune system of his own, to decide to take *his time. *

This stinks of manipulation and that pisses me off.

Despite everything that he puts his entire family through, just for shits and giggles, I worry constantly about his health.

Maybe this was nothing.  Maybe he just wanted to do well on his test.  Maybe this is the one time that he tried to do the right thing... Maybe he just wanted to avoid or delay the infusion.  The problem is that there is just no way to responsibly believe anything he says.

Next time I find myself in a similar situation I will apply what I've learned this time around.  To hell with his education.  His health and safety come before a stupid test....

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