Monday, October 15, 2012

What it's like to be Jude's parents.

Mike was rather emotional yesterday. I attribute it to the fact he has been sick, but sometimes he is just an emotional guy. He got teary when he saw a little boy like Jude walking with the help of his mom yesterday. He then got teary when reading a summative written by a mother in a situation similar to ours. Last night while laying in bed he said

Mike: Did you read this thing Stacey posted about "Neuro mom"
Me: I started too, but I am so worn out from being sick and Emily's party I just couldn't handle it emotionally.
Mike: It's really good
Me: I will read it tomorrow so I can let it sink in

He then read me a bit, but I think he got that I was just physically and emotionally exhausted from putting on Emily's Smile Box event. So he posted it on his facebook and today I read it. So today I sat down and read it ........... at work..............big mistake. So I will for go the blog about Emily's Party and post it tomorrow so you can let this soak in like I did. I think it is the very best writing in regards to Jude's condition that I have read so far. It really sums it up from beginning to today.

I am a Neuro Mom

I just wanted a healthy baby

With no tubes
And no surgeries
And no daily meds
I wanted to take my baby home
And go around showing her off like normal new parents do
I got a very quiet baby, who never made a fuss but didn't meet the milestones, and screamed non-stop in car rides meant to calm

Then there we were again, 6 months later. With seizures.
Stuck in a hospital room
Most, almost all really, were afraid to visit...afraid of the unknown, afraid of the sadness of a sick baby
It was sad, and disappointing.

And then in parade the other moms
Strangers with babies like mine
Even babies who have finished their battle and are in Heaven
You can see it in their eyes -
They know

And they bring chocolate
And coffee
And Tears and Laughter
But mainly they bring empathy

And so they hold my hand and lift me up
When I cannot stand
And together we walk this journey

I am a Neuro mom
I know things one just should not know
I know what it's like to hear the words status, and slowing, and spikes
and regression, global delay, and hyppsarrythmia.
I know that constipation, fever, loud noises and colds can bring on seizure.
I know that one seizure is one too many
I know how to put a mic-key back in if it comes out
I know the cry of another Mom losing her child
I know what a running group of doctors means
I know what it's like to watch a machine
that has your baby's future written all over it
I know the exhaustion of pushing the button every 2 seconds during a VEEG
I know the "wanting" to watch the EEG machine, even when the techs turn it away
I know what it's like to wake in panic at beeping alarms
I know what it's like to have nurses and doctors know how you take your coffee
I know the guilt of wondering if you are neglecting your other children while sitting in the hospital while you watch this one.

But I also know what it's like
to leap with joy at my baby drinking half a teaspoon
to high five eating a bite of a sandwich
to defy the odds
to lift up another neuro mom in tears
to be surrounded by Warrior Moms, and FFL
to have made friends for life because of my child's condtions
to release a balloon in memory of an Angel
to survive a war
to be in the presence of a Miracle

So today, and everyday, I am a Neuro Mom. I am a warrior mom. I'm so proud to be .
And I wouldn't want to be anything else.

(Borrowed from a friend) ♥

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