Hello Everyone, my name is Kayla. I was not brought up in a family where expressing anything was considered a "good" thing. More like if its not funny, or harassing, it isn't very welcome. But I say fuck them, with a polite smile! This blog is just about a day in my shoes, with a child that I never deserved. Not because she wasn't perfect, but because I was far from.
Above is a picture of my hero, her name is Adelia. She is my daughter, one of 3 girls, and an older sister to a devilish little boy. Who on a good day Ill admit he is my son.
Out of all of Adelia's siblings in my home she is the only child that is disabled. With what? I am sure you are wondering, and I wish I had an answer for you. More importantly myself and her.
This little firecracker has spent the better part of her short existence in hospitals, dr. offices and meetings just to come to one conclusion. Why am I disabled? She has taken me to numerous appointments and put me in charge of fighting numerous battles. Now I am sure you are confused when I say, she has done these things. Please note that is NOT a typo. She has allowed me to do these things for her, and given me the strength to do so.
Her first diagnosis was about 3 years ago, which was Ataxia and Cerebral Palsy. After a year of this diagnosis they did not find anything connecting her lack of motor skills, and inability to walk properly to the temporary diagnosis. Which no matter what name they freaking give it, as her mother I just want to know, what the HELL DO I DO? Which of course without a proper diagnosis no one can tell you that. The nice thing was during this appointment, Adelia laughed, played, hugged everyone who came in, asked the doctors to play board games, and they willingly did. If she is happy then I am happy.........on the outside.
So weve done these lovely little pointless appointments for what seems like an eternity with 0 outcome. Then finally she drags me to another one.
Yes I said DRAGS!
Meaning I dread them and do not want to go. She is excited, cant sleep, and butterflies in her tummy to see any doctor. TELL ME THATS NOT NORMAL?
She is accustomed to it, which also makes the weight of my heart feel heavy.
So at this last appointment that went on for 2 days they come in FINALLY with some news. "Well she is not having seizure's" says the doctors (5 in the room).
I am looking at them confused, wondering why they are pausing. "
But the back portion of her brain is degenerating along with her muscle mass in her legs".
They give me one of those I am REALLY SORRY stares into la la land.
We were here to discover seizures not this!! Not only have you made her stay in that freaking bed you've tied those stupid things to her head, and taken over 10 tubes of blood from her fucking arm. So what the FUCK are you talking about.
How the hell do we come here for seizures and you come up with that? When in 3 years you cant seem to tell her head from her ass hole!
I couldn't breath, so all of what I was thinking stayed in my head.
So stupidly I ask why is this happening? and the response was " we do not know. But we've ordered some more testing to be done and you will need to be back in 3 weeks for a test that will be highly uncomfortable for her."
As I sat there I heard nothing and I mean nothing.
I know lips were moving but I couldn't hear anything.
I look over at Adelia, she smiles at me.
Looks at the doctor, with zero fear, still smiling, hugs him and asks if she can go home now? Then comes and sits with me. Instantly I feel like I have the strength of 100 Roman soldiers, and I come out of whatever hell my mind had gone into.
I ask her if she is ready to go now, she smiles and says yes.
So we do.
On the way home I break...I am quietly in tears thinking what the hell am I to do if she is not here to pull me out of my slump? I need her strength, her odd, ALL DAY, EVERYDAY happiness. That I swear even if you hit her with a truck shed hug you.
I wont make it I think to myself, she makes me better, even if she drags me to these appointments and makes me be nice to everyone.
I look over at her dad, thinking crap I forgot he was here.
He seems to be holding up ok.
He turns on the music and Katy Perry"s "Roar" song comes on.
In the backseat, with all her might, bellowing out, " I got the eye of the tiger.....and you're gonna hear me rooooooooaaarrrrrr" !!!!
I smile loving that she is rocking out.
Then out of the corner of my eye I see her dads shoulders flinching. With tears streaming down his face, he turns the mirror to watch Adelia sing her little heart out, and makes himself smile at her, even though he hurts.
It was at this moment I realized its us, we are the ones that are disabled by what is wrong with her. She is just fine. Its making us crippled, our hearts are weak, mentally tired, frustrated, mad at life, and sad. Without her being exactly who she is, we would never make it. So yes she chose me, I didn't ask for her to be the way she is. She was just amazing enough to let me help her, and when I say her, I mean help me.
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