Normal Doesn't Exist

I am not sure normal exists anymore.  There is not a day that goes by that I don't worry about my son.   Is today a normal day?  No today is not a normal day, and neither was yesterday nor will tomorrow.  Yesterday was baseball practice.  Seems normal as we’ve been doing it for several weeks, but it’s not normal.  We changed his dose for a long day of physical activity.  Not much more than a normal day but just a little more to get him through the practice.  This is how it works.  Well that is how it is supposed to work.

Not this week because nothing is normal.  If he was an everyday player for the Royals his dosage would be different because practice would be normal, but he’s not he’s a kid with AI and nothing is normal.  So we need to dose him more when he has practice and this time more now was not enough.  Sunday night he came home and was tired, but who wouldn’t be we just finished an hour and a half of baseball practice.  He ate dinner and I could see it coming on his face.  It’s a look we have become familiar with when he is getting low.  He gets a black ring under his eyes and his face almost loses its life.  His normal smile is gone.  That lift that he has on a good day is now a sag of a bad day.  Our son is a fun and lively child.  He’s funny, witty, active, and talkative, but not when he is starting to go into crisis.

This night he was going into crisis so we dosed him appropriately.  He said he was going to go relax.  He went in his room and watched some TV while he laid in bed.   We checked on him and he was tired but seemed to be OK.  I say OK, but only because he wasn’t showing more than tired and his color being off.  These are not panic things just worrisome.  It’s not time to panic until more things show up.

My wife got ready for her work week and I relaxed over the next couple hours.  For those who know me relaxed means I played some video games with my friends.  We checked on him multiple times over the next couple hours.  He still seemed “OK” and not getting worse; still tired but nothing more.   At about 7:45 pm I went to check on him again and he was sawing logs.  He was out for the night.  We decided to let him get his rest and skip his non-critical allergy medicine and try to sleep to get caught up. 

This morning we let him sleep in a little and he got a late start at school.  He still wasn’t functioning 100% so we upped his dose to get him out of his funk.  We decided to send him to school because he wasn’t terrible and he needs to be at school and not get behind, but looking back we should have let him stay home.  He went school and started his day.  Of course this week we are doing state mandated school testing.  Being high stress tests and high stakes the schools really pressure the kids to do good.  So had he not already been dosed high this would be a thing we would dose him high to help him handle the stress.  Being that he was already dosed high we thought he could handle it. 

We were of course wrong.   My son texted my wife about 1:30 pm today telling her about a stomach pain.  This is another symptom that he shows when he is in crisis. He went to the nurse and we asked the nurse to dose him again. My wife picked him up from school.   He came home and again went straight to bed.  For his afternoon dose we followed protocols.  Problem is he’s not recovering.  He ate dinner but again has just laid in bed all night.   Tonight he fell asleep about 7:00 PM.  We just woke him a bit ago to take some more medicine and let him go back to sleep.

We called the doctor tonight to see if we could/should do anything more.  He suggested yet another routine to follow.  Apparently his body just can’t catch up.  Tomorrow he will stay home and not do school.  I don’t know what this means for his testing but frankly I don’t care.  I am hoping he will wake up feeling all better and he just got to play hooky from school.   I just want a normal day.  It’s too bad they may not exist anymore.