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A Work in Progress

Thursday, August 14, 2014

Chronicles of Parenting the Chronically Ill

It's 2:44 am and the dog barks and you realize lights are on in your daughter's room.  You spend ten minutes hunting for clothes to throw on because we have company and finally go out to check.  She's scared and can't sleep and there is nothing you can do about it.  Which sucks.

 You wake up in the morning and start puttering downstairs and realize your husband is crying in the bathroom.  Because the whole thing is just so freaking hard and it is so difficult to trust that you are doing the right thing.

Someone posts this on Facebook and it makes you laugh inappropriately long.
 You split up with the kids because they both have a Dr. appointment on the same day and the one going to NYC is in full blown panic attack mode begging you to come with her and you don't know what to think because half the time it's like she doesn't even know you are alive.

You start getting ready for the other one's appointment and she begins to melt down over leaving the house, ends up sobbing and begging you not to make her because "she's been good".  You call the office in tears of your own and cancel, you just can't do it.

You snort or laugh every time the financial planner/life insurance guys, who came for a consultation, says anything because who the hell has money to put aside for anything let alone to hedge your bets?


You spend what would, to the outside world, the world of not sick kids, an inordinate amount of time on Netflix binges, reading and computer games.  

You are incredibly grateful for days like this one.  Because through it all, we still have each other.
 You become incredibly grateful when someone starts a new support group for caregivers of loved ones with Lyme on Facebook and make a new friend. 

You feel badly for people who love you and want to help and there just isn't anything anyone can do.  You wish you could express how very much they mean to you and that every time they reach out it makes your day just a little bit better.  Every text, call, email and Fb message is precious.

You want so badly to just hug your kids and make it all go away but more often than not, they can't deal with being touched, which hurts because even though they are not rejecting you, it feels that way.  

Your husband makes you howl with laughter describing trying to sneak up on his cell phone map to make the train station behind him so they know which way to start walking to the doctor's new office because he doesn't know how to turn off auto rotate.  Still giggling.

You realize this.


And this





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