I'll be the first to admit it is rare for me to be at a loss for words... so I apologize in advance if this is a challenge to follow, because my head is all over the place tonight.
I have a confession.
I have poured every ounce of my soul into getting these girls the latest treatment, the most knowledgeable doctors, and the best therapists. I have done countless hours of research. I have been talking to other families to see if there is something we are missing. I want to - no, need to know - at the end of the day, that we have done everything we can possibly do for them.
I can live with the time it takes to figure out their disease. I can handle IVs and blood draws and spinal taps but I don't know how to help Addison now and it's killing me. She is more than a one-person job all by herself anymore... I close my eyes and the pain in my chest is so strong.
Addison is not happy; no one is happy here right now. I said it. We are failing... I am sitting here gritting my teeth as I type those words. I am suffocating - under the weight of everyone's needs that I am clearly incapable of meeting by myself. Addison needs one-on-one attention every minute she is awake... she just wanders around destroying things. Hurting herself. Hurting her sisters.
Its taking everything in my not to rush into her room right now and take
my precious babygirl into my arms.... I could hold her all night. I love her
smell, the way her silky blond hair fall across my cheek. I know this
won't last forever and I hate myself for feeling these very real
feelings of agitation, grief, and uncertainty about how to help her. She is innocent.... she sticks her little lip out and sobs if I so much as give her a stern talking to.
But then she unbuckles her car seat and crawls on the floor of the van for the third time on a 10 mile trip, or she screams and throws a chair at one of us, or she takes off her diaper and pees on the couch in the same spot that is still drying from the last time ten minutes ago.... and its just a slap in the face that taunts me on my inability to help her. I could talk to her until I am blue in the face. Nothing seems to reach her. I really thought it was because of her inability to communicate, but now she is talking so much and still struggling to function at the most basic level in our house. She doesn't know how to play without some sort of direction. She is loving and smart and funny... and exhausting. And she fingerpaints in her poop. Because she's Addison....and she struggles. And I struggle. Adam thinks we need to find someone to watch her alone who can give her the time she needs during the day.
Maybe I'm not ready to pass the torch to someone else. Maybe despite the fact that I am burned out and so tired I can barely stand, I want to be the one person who has always been there for her. I want to be her safety net. I want to help her jump those hurdles and leave her obstacles in the dust. But there is a price. Brooklyn. Lily. Audrina. There is a price, time, that I must sacrifice from the other kids. Why is it their burden to bear? They need me too. They need their mom. How do you give it all and when do you know when you simply aren't enough? Hard questions to take in. The tears keep coming tonight, but no answers. Guess I will just keep praying.......