Who's is the Mighty One? Surely not I ...

I was asked by The Epilepsy Foundation to write a little blurb on my daughter and the struggles we face as a family. The piece they are writing on is titled- "The Mighy". I wanted to share with you my "piece" .

When I was younger I wanted to be a nurse. I wanted to go into the peace core and rescue people.

Now, being a mother to a special needs daughter, it is sort of fitting but it holds an entirely different meaning. At the age of one, my little peaceful girl started having seizures. She was probably diagnosed prior to us realizing it but I think as a parent of a child that is premature, you are in total denial of your childs true health and well being. We were just trying to survive day to day, thethalone admit she had "issues".

Over the past years that led up to her ultimate diagnosis, I have spent countless hours trying to determine what exaclty is "wrong" with her. Her symtoms for so long mimic'd autism and although that diagnosis would have been so easy, that was not her true diagnosis. Epilepsy? Ok, but kids that have epilepsy don't act like her. After months of tortuting myself, I decided I had to let it go. I had to stop trying to search her symtoms and just be ok with the fact that we truely will proably never know exaclty what is "wrong with her". We had to be ok with that.

My family and some close friends suggested that I belong to these special needs clubs. I didn't want to be a part of those clubs. I didn't want to be around those different, sometimes sad people. I wasn't sad. I had admitted she was different. When I would go to the specialist office at Oregon Health Scince University, I would cringe at the "A" word or the special needs word, my heart would sink and I would get a sudden stomach ache. More than anyhing I had this anger inside me bubbling up and I just wanted to prove all these "experts" wtong and find a "cure" for whatever was wrong with her. I came to realize, that once you finally accept it, no matter how long it takes, these clubs are not that bad to be apart of.

Some of the people that you come in contact with, therapist, experts, neurologist, social workers, these people are amazing. These people acutally, to a certain degree, understand what we are dealing with. They understand her language, why she talks loud in public, why she twirls her hair insesitently or pulls at her coat strings 100 times an a hour. They actually "get her" and are interested. They are the Might, they are the Angels.

Sure, I still have those days where I wonder- was it something I ate while I was pregant with her? Was it that hairdye I used the later of my first trimester? Was having sex with my husband at 30 weeks the reason my water broke? I can't think like that, or I will go mad. And yes, sure I wonder, do other 11 year olds still play with their dolls and have their dolls hair look as matted as hers? Are they still not able to fully spell their last name without help? Do they run to push the elevator button as fast as she does and then not have a clue where they are going? Are other 11 year olds like her?

I have my days where I feel like I have a total handle on this life. She is so predictable, you can literally write exactly how your day is going to go when you are with her.. But then there are those days, when you are feeling good about your life and boom, out of no where, she starts screaming," mom, I see a rainbow" and boom, down she goes. I am dropping whatever I am doing and running as fast as I can to catch her. Some people say, man you are so lucky that you are a nurse. I must say that it's great when you are in a emergency situation at work but when it's your own child, your training goes out the window. You instantly turn into a scared parent that is literally whispering a thousand times, as fast as you possibly can, "please Jesus, please be with her".

Those are the days that I have this insane appreciation for my dog Sam. You love your dog more now than you ever thought you could. You forget to give her a bone, you forget to walk her, but this dog may be the only witness of the crazy and blessed life you lead.. somedays the sadness of her life seeps in like rain and somedays the sun is shinning so bright you can't even see.

I am not going to lie and say my heart doesn't sink at times. When I visit with my friend that has a daughter the same age. When I'm getting my nails done and I glance over at the little girl sitting there quietly letting the lady put her nail polish on. When you are watching your son at his basketball game and you can't fully pay attention cause you are so consumed with making sure she is not annoying the other parents. When you have to admit that a big part of your marriage ending was because of your constant care of her and your lack of maturity at the time.

Then you have these amazing days, that by far outweight the bad. You see these stangers come up to her and know her by name. You see every animal just inammered by her presence. She is like a magnet for furry animals. When all of a sudden, she asks you how you are doing? and you realize, she just asked me a question about myself...that has never asked been asked before.

I was always what my parents felt was a "people pleaser". That is the whole premise of my parents placing me in a christian high school when my siblings stayed in public school. But there is nothing like having a special needs child to give you your voice. You learn very quickly to say, no that is not going to work for us. You find yourself getting hot and bothered over advocating for her to get more speech therapy authorized in school. You don't flinch when you are in public and you are literally pulling her pants up for the 5th time- she unware of the fact that her crack is showing. You don't bat an eye when a staranger looks at you when she has gloves and a hat on and it's 80 degrees outside.

I will say that it has also given me this gratefullness I never had before. When others are going through this, you will drop whatever you are doing to answer an email or text in ways you never thought you would ever do before. I find myself clearing the path for those people that are just starting to walk down it.

You will get tired but you will never give up fighting the fight. You may look forward to a break, but you will never give up on that child that you call yours. You will be called brave by some, but think she is the brave one. You may learn way more than you will ever teach....Every day, she teaches us something and we are the wiser for-So when they ask who is the mighty? The Mighty is Ellie and having Ellie in our lives.

#epliepsy #inspiration #outfit #seizures