Wednesday, September 16, 2015

Moyamoya disease - infant - childhood - a hand in the darkness

Yes this is for you.

Your google search lead you here.

I left this here for you.

A tiny life preserver in the chaotic sea you are fighting to tread water in.

*holds out my hand*

*holds yours tightly*

Gently takes your other hand and places it on your heart.

Start the journey here.

How are you?

Have you had time to catch your breath yet?

Your in the wringer right now, and probably haven't had a chance to deal with anything. You went straight from parent of a healthy child to a life threatening battle for your child's life. You went from just a parent to a special needs parent in one scary heat beat.

How do you have time to process it all and focus on your child?  You don't. You do what you need to do, you keep running, and treading water and not looking back.

You know its a looming monstrous tsunami behind you and you are afraid to turn and face it and deal with it. Afraid it is going to swamp you.

The hospital will treat your child's illness and ignore the trauma that was happening to you right in front of their eyes.

Hospitals are used to dealing with this level of chaos, they get numb to it. You on the other hand just had the rug jerked out from under you and the hospital staff isn't even offering you a hand up.

You should have been offered help too. This is one flaw in the process I wish could be corrected.

I'm sorry they didn't acknowledge the pain you are in.

The voices you need to hear are out there. The internet is your friend. Reach out and meet those who are reaching back with there words and life experiences.

Lean on every support person you have. Speak it all out. Just tell them, I need and ear, please just listen, please just let me talk and you validate me by listening and bearing witness to me. Just let me cry for a moment on your shoulder. Tell them, just wrap your arms around me tight so I can cry it out. Release that tension so you can focus without your emotions rocking the boat.

The buzzing doctors/neurologists/surgeons and nurses are all going to be focused on your child and they are going to be throwing an awful lot of strange medical jargon at you and things are going to move fast.  Your going to get a crash course in anatomy and neurology, physical, occupation, and speech therapy. Take notes. Request information on paper. Get a copy of your child's chart before discharge. (when they ask you why you need it tell them "for continued care".)  So you can read over it later when your heart isn't beating so loud and drowning out every thing their telling you.

Before you are ready for it, they will be sending you home. Home, without the extra added security of having round the clock nurses/doctors.

To be alone with a child you love but are feeling out of your element to be responsible for. This is a steep learning curve, be gentle with yourself as you are learning this new skill set.

You will get messages from well meaning friends/family like:

"I'm so glad things are back to normal now" or "I'm so glad ____ is fine now"

Don't pretend things are "back to normal" or "fine".

Things have changed.

Let yourself process this on your own pace. Take the time to take care of yourself in this.

*gives you a firm hug*

*hands you a sandwich, and a handful of Kleenex, and lets you get back to searching the web for information.*

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