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Diaries of a Special Needs Mom​

I refuse to be a statistic

3/25/2017

4 Comments

 
Silas was diagnosed with Spastic Quadriplegia Cerebral Palsy when he was around 7 months old.

The visit went like this.

We entered the room, sat down and were given his diagnosis. The next thing that came out of the neurologists mouth was:
"The divorce rates in families with special needs children are really high..."

Really? Yes...really.

Well, we told him thank you but we weren't going to be a part of that statistic. 
Not without work though...it's damn hard. And really, he's right. The divorce rates are high, because this life is really freaking hard. But please, be more sensitive to the fact that you just gave a life changing diagnosis to our family, can't that little speech wait until the next visit?

Anyway...I'm focusing on this tonight because today has me thinking how lucky Matt and I are for making it this far. Because during times like right now, where you just pass each other by, exchange details about your child, relieve each other from shifts in the hospital, and go hours without talking because you want any excuse not to have to replay the "shift" you've just had and the pain you've had to see your child endure just to let the other person know how it's going...

When you live a life like ours you don't get many chances to make time for each other...you get to trade off shifts, you get to sit in silence not knowing what to talk about because you can't stop your mind from running to think about anything but the pain your child is in. You get to tell each other how you are sorry for being so distant and disconnected but that you love them and hope they can remember that through everything thats going on. 

Matt and I didn't get a honeymoon. We don't get to vacation. We don't get to spend much time together and definitely don't get to spend much time together as the three of us because one of us is usually needing a break. We got the time before the brain injury. And the time after has been forever changed. We mourn the loss of what our family would have looked like. We mourn the loss of making memories together that don't involve pain and stress, and tears and hardship. How are you supposed to remain strong together in this life? I'll tell you it's hard and I don't have the answer because were simply trying to just survive this right now. But I guess I just feel lucky were still in this together.

Tonight my heart just hurts for my family. I want to acknowledge how hard this is. How lonely it feels. And how painful it can be. 

I know we will get through it, because we always do, but i'm just hurting right now and I needed to write about it. Just for one night I wish Matt and I could enjoy what we used to have...

I want to thank my family and friends for letting us have time together, and helping us try to be able to enjoy each other, even if it's just to sit down to a dinner and ask the other person "when do you think this will get easier?" "what do you think is wrong this time?" "why did this happen to us?" "what did the doctor say?" or to even just sit in silence with each other.

I hope we get to a point where we can someday fully experience a glimpse of what we thought our family would have looked like, what our marriage would have been. But until then our life is what we have and we'll make the best of it, and remain strong together. 

Brain injury has taken a lot from us, but it will not break us apart. 

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4 Comments

A Vicious Cycle...

3/24/2017

3 Comments

 
I OFTEN TALK TO MYSELF, NOT OUT LOUD, BUT IN MY HEAD. I FIND I DO THIS AFTER I EXPERIENCE A ROUGH DAY, A TRYING TIME. I ALLOW MYSELF TO WRITE A STREAM OF CONSCIOUSNESS IN MY MIND, AND TONIGHT I WILL LET YOU IN. 

PARENTING A SPECIAL NEEDS CHILD CAN PUT YOU INTO A VICIOUS CYCLE.

A GAME YOU PLAY OVER AND OVER AGAIN IN YOUR MIND.

FEELINGS YOU FEEL THAT ARE HARD TO ADMIT EXSIST...

BUT REALISTICALLY KNOWING YOUR CONSTANT POSITIVITY AND PATIENCE CAN ONLY LAST SO LONG. BEFORE YOU WANT TO CRACK. 

THOUGHTS CIRCLE, AS ANXIETY BUILDS.
I AM SAD THAT HE IS IN SO MUCH PAIN.
I AM MAD THAT HIS SADNESS IS DRIVING ME CRAZY.
I AM SAD THAT IM MAD THAT HIS PAIN IS MAKING ME SO ANGRY.
BECAUSE HE CANNOT HELP THE PAIN HE FEELS.
HE ISN'T IN CONTROL.
I CAN CONTROL MY EMOTIONS, BUT WHY DO I FIND MYSELF WANTING TO EXPLODE!
ITS NOT HIS FAULT.
WHO CAN I BLAME?
I SHOULN'T BE FEELING THIS WAY. I SHOULDN'T BE GETTING UPSET OR RAISING MY VOICE AT HIM TO STOP CRYING.
I TELL HIM OVER AND OVER AGAIN HE IS OKAY, YET I KNOW HE IS NOT AND I'M LYING RIGHT TO HIS FACE.
BUT I JUST CANT STAND TO HEAR THOSE SCREAMS AND CRIES OF AGONY FOR ONE MORE SECOND.
I JUST WANT HIM TO BE QUIET!
I AM ABOUT TO EXPLODE.
I NEED TO BREATHE.
ITS OUT OF MY CONTROL.
STEP AWAY.
INHALE.
EXHALE.
RESET.
AND START ALL OVER AGAIN.


...BECAUSE ON THIS JOURNEY THERE IS THE GOOD, THE BAD, AND THE UGLY. AND TODAY FELT LIKE AN UGLY DAY, AND SOMETIMES YOU JUST NEED TO VENT. 
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3 Comments
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    Author

    My name is Melly Brown. I am the mother to Silas, who has profound special needs due to a brain injury at birth. I'm here to blog about the nitty gritty, raw truth about raising a child with special needs. The highs, the lows, the ups, the downs. I will review some of our favorite products, share the secrets of how to navigate this special needs life, and vent about some of our toughest days, and most rewarding as well. Join me in my journey, I do not walk this life alone, and would like to spread awareness for all those out there who live this crazy tough special life! 

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