Saturday, November 12, 2016

Yin and Yang

When you have two kids who are neurotypical and one who is not only NOT neurotypical but also medically fragile, you live in an odd space in the universe.

That space of lecturing one child (back in the days of high school) that her 91 "had better get pulled up to at least a 94 or there will be consequences.", to laughing off a ridiculous warning letter from the State of Maine that your special needs kid is not even meeting the special needs requirements for improvement.

You yell and scream at sporting events for your neurotypical kids to, "Run faster! Get the ball! Don't you dare give up or let the other team push you around!", and then go to a Special Olympics event and make your kid who is pushing her special needs sister in the 15yd dash take a dive so another kid can get to also have a blue ribbon.

It's a world where you leave your kid in the hospital with her dad as she is fighting pneumonia and rush to get to an Awards Luncheon with your eldest kid who has won a pretty sweet scholarship and you just REALLY want to be there with them to celebrate that.

It's then going back to your island home only for the night (while fervently praying that the child in the hospital does not get worse in your absence) because it's your middle daughter's Junior Prom and you want to be there for the getting ready, the pictures, and because an adult SHOULD be home on prom night just on principle. Also, to make sure they know that they, and the things going on in their lives, are equally as important as the very opposite things that their sister is going thru.

Where the Easter Bunny visits the hospital and your two older kids have to remind you that it's okay if Christmas is also in the hospital because their sister is sick again and the doctors are saying you probably won't get home.


It's having your kids graduate high school as Salutatorian and Valedictorian respectively while knowing your special needs child's school experience will not even be close to their sisters.

It's dropping off your medically fragile, special needs child at a beloved friend/former home nurse's house in order to be able to attend Awards Night at your eldest child's college because her faculty advisor had personally contacted you so you would be sure to see your child be awarded the Department's Education Award.

It's watching with amazement and so much pride you feel like your heart might just explode from it, your kid, who has never been able to talk, tell you for the first time at thirteen years old, "I love you.", using an eye gaze device and then hearing her sass people with it with INTENTION. It's validation of all the things you knew your kid was capable of only now, no one can deny it or try to make it seem as though you're only seeing what you're wanting to see.

It's a constant push/pull of awesome and sucky. Easy and hard. Joy and Sadness. It's both/and. Every single day.

This morning Tess had a seizure that last just under thirteen minutes. She had only been awake and out of bed for about a half an hour before it hit her. After giving her three rescue meds and waiting for them to do their job, we put her back into bed knowing that she would most likely sleep the rest of the day.

It was only nine o'clock in the morning by that point but we were already just exhausted from the mental toll it takes on you to watch your child go thru that. Then there is the fear that rings in your head with every alarm from her 02 monitor, "SUDEP! SUDEP!", so you get to keep that nice level of stress going even after the initial seizure has passed. And because the amount of meds that we had to pump into her body depresses her already shallow breathing, she has alarmed A LOT. I finally caved and put on her much hated CPAP mask to try to help her get a restful sleep. It makes me want to cry when I make her wear it because she hates it so much but I fight back the tears, tell her how brave she is and how strong she is and how much I love her and walk away feeling like the biggest shit head around.


the hated CPAP 


Then I walked out to the mailbox and found this:

proud proud proud


Ellie was invited to join Omicron Delta Kappa National Honor and Leadership Society based on her "superior academic achievements" and "exceptional leadership ability." All this while taking pre med classes.

My mood instantly went from scared and sad for one kid to completely happy and proud for the other.

This is the Yin and Yang of my life.

It's bizarre and scary and awesome and, as the saying goes, "gives me all the feels."

In other words,

It's good.