-Hey there all my lovely Followers-
So I know that those of you that actually know me, know that the last couple days
Well the last couple months really have been pretty difficult.
You also are aware that we got some tough news yesterday.
And I know many of you are wanting to know what is going on.
I also know some of you do not know the story of how we got to where we are today.
So lets start from the beginning so we can all get on the same page.
Six years ago we found out were expecting another baby.
We Had a Beautiful little girl and we very excited when we went in for our 16week check up
and found out we were expecting a bouncing baby boy.
Everything was normal up to that ultrasound.
Great Heart Rate, Great Growth, He was prefect.
The Ultrasound was normal during the procedure...
But three days later
We found out that all was not normal, We got a call we never expected.
And our entire world changed.
They told us there was an anomoly and we needed to be seen by a specialist.
We went in a week later and saw the specialist and got another high tech ultrasound.
They didn't let us leave, they told us there was something wrong
and we would need to speak to a Genetic Counsler.
I won't go into the disgusting behavior of that counsler..
But I will tell you we were told Jaydon had either had Down Syndrome
or Trisomy of the 18th Chromosome.
And that he showed no outward signs of downsyndrome
and would likely not live once he was born.
They wanted us to get an Amnio so they could find out what was wrong.
But I refused stating that my child has a low chance of survivial I am not going to
let you preform an uncessary test that carries a high risk of miscarriage and preterm labor.
When I finally went into Labor at 42wks and 2days I was petrified...
But I had a plan I would give birth to my sweet boy and his daddy and I and Sissy would love him for every
moment we were blessed to have him.
Daddy and I had already agreed if it was Genetic we would not be having anymore children.
But then....
I gave Birth To a handsome NOT SO LITTLE man
Jaydon Zane Benson
Born 5/11/2008
9lbs 3oz 21 3/4in
And he was PREFECT...God there was everything so prefect about him
He came out screaming and wiggling and the nurse handed him to me..
And I looked down into his big beautiful eyes and I was in love.
And then I went to hand him to his Daddy and a nurse swooped him and grabbed him.
I nearly lunged off the bed. I had already told them how it was supposed to be.
He was supposed to be handed straight to me and then I was going to put him in his Daddy's arms
and big sissy was to come in and be with him.
But they took him and put him in the warming bed and ran out of the room with him.
And I panicked...He was prefect and they were taking him away.
My blood pressure skyrocketed and I screamed at Devon to follow them.
Devon went running out of the room as I was bleeding out on the table.
I didn't calm down until I was reminded I needed to get the bleeding to slow down,
I had Cherry to think about to.
And then I got the text.
He had respiatory distress and he had to have a breathing tube.
He was in the NICU.
But he was okay...for now.
They ran their tests..but they didn't know what was wrong.
They just knew it wasn't genetic disorder.
The next couple years was filled with Nuerologists, Therapy, and more Questions than answers.
There have been Many triumphs.
When he said mama and dada for the first time.
His First smile. When he Walked at 15months.
Everytime he did what they said he never would be able to we jumped for joy.
We watched him grow...so in love with the little man God had blessed us with.
But for every triumph
There were stumbles and Mountains
We found He was extrememly farsighted.
That he might need exteremly painful bone surgery, every couple years.
And so on and so forth.
We kept on going strong as a family not letting any of it hold us back.
He went to pre-school.
He had all the fun other kids had and did all the things other kids did...
He just had to work 10times harder.
But he reached milestone after milestone.
And our Family grew :)
He took very well to being a big bubba
And then in Nov. 2011
We Moved to Eastern Wa
And we started rebuilding his medical team
And we got a New nuerologist...who finally had a diagnosis
After looking at his prior MRI results for not even five minutes she said..
He had a stroke in utero...
We still don't know why...nor will we ever
But at least we knew what.
And then we Moved to Spokane in January
And he started getting therapy and things were looking up
And then school started
and suddenly Jaydon wasn't adapting well.
And he was acting out.
He was getting violent and misbehaving
Which is not at all like my Jaydon
And so we had to re-evaluate his IEP
and things like ADHD
and Dyslexia
and Learning Disorders
started being discussed..
And my world felt upside down
and before I could fully process that...
The puking started...and my instincts screamed that something wasn't right
but I was scared I didn't want to put him through more tests.
My poor boy was tired...
So tired and I could see it everyday in his face and his actions.
But when we went in for our yearly visit with his Nuerologist, she said we should get and EEG
and we did...
And Yesterday we got the results...
And once again my world turned upside down...
Jaydon has Epilepsy...
Typing that...admitting it...facing it...
It's scary...
Now I know you want to say
It's treatable..
It could be worse..
You'll make it through...
I NEED you to remember...what I said 8 lines up
My world has turned upside down...
Does anybody know the theory about that...
Given three days and everyting will look right again...
I need TIME...that is what I am asking...
I know it could have been worse..
But this is my baby...
I grew him inside of me..
We will never know what caused his stroke...
But his stroke IS what caused everything else...
And I had one job as his mother...
Keep him safe and grow him healthy.
It could have been anything...
Me having a cold...me laying wrong..
and it may not have been anything I did...
BUT it doesn't matter how many times you tell me it's not my fault or that I shouldn't blame myself
I will ALWAYS feel like it is and I will always blame myself.
It's not that I don't love everything about my son and everything he is.
He is prefect to me...
But this is my baby...
given a choice I would not have chosen to make his path more difficult.
To not make it easy for him to be a kid.
And yes I know I am not the one who gets to make that choice.
That's obvious or we wouldn't be having this little explination.
God made that choice.
And God doesn't give anyone more than they can handle.
But that doesn't mean that I can't bulk under the pain of the burden.
It doesn't mean I can't ache for my baby to have a simpler childhood and be able to play soccer with his sister, instead of having to tell him not this year baby.
Cause I know after therapy 4days of week outside of school.
As well as at school and full day kindergarten...
He doesn't have the energy or strength to let him do something that he actually WANTS to do.
But now he has one more obstacle to endure.
And THAT is what I am dealing with.
It's not just a treatable diagnosis to me..
IT IS MY BABY... It is HIS LIFE...
And each time we deal with something I think okay I can handle this...
Okay we will be okay..He wil be okay
we have him and we are blessed because he is here...
But DAMN it I AM HUMAN okay...
I am allowed to ache...
Because this isn't just some treatable condition to me...
It's my child...it's MY son..
It's his life...
And it's a painful reminder that no matter what I do...no matter how I pray..
This isn't my choice it's not in my hands...
It's in Gods...and Given time I will accept that
and I will trust in him as I have done with every other step of this we have been through...
But you need to remember I am Human and this is my baby...
and it's a reminder to me...that I never know what's around the corner
and lately all it is has been more for my poor child to overcome...
For my baby to deal with...
and now I am scared...WHAT ELSE...
That is what is scaring me...
And yes it is treatable...
He will be starting his medicine tomorrow
And I pray he doesn't have the very rare side effect...
But the very common side effect is Drowsiness...
Because that's just what my overly worked baby needs...
I get it...
It's not earth shattering...To you
But he is five and I have to tell him no
when he is working so hard...
To do what your child can do much easier...
So Judge me if you must..
But judge me not for my weakness...
If you must Judge me for my strength...
The strength of my love as a mother...
-GOD BLESS-
The Benson Bunch
*I might hurt I might cry,
I might shake in fury as I scream why...
But when the thurder has left my veins,
When my hurt and anger drains...
There you will be sweet and loved,
A gift sent from God above.
He gave me you in the dark of night,
A broken body but a faith so bright.
Your heart is loving and your soul is whole,
You have helped me learn and heal my soul.
I know I am weak but you make me strong,
And you are the story God had for me all along.
So I bow my head as my weak heart bleeds,
For I will pray to be the mother my child needs.
God gave me you so I must be worthy,
Because the love I feel is unearthly.
You are a piece of the family God built for me,
You are the strength within I forever need.
-Nancy Benson
Oct. 25th 2013
- I may have my moments of weakness but that is the Joy of my life...When I am weak I have others
who hold me up. Those that bring me Joy and help be have faith.
We are a family and we are strong
We will overcome this and anything else that comes our way...
TOGETHER
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