looking for rainbows. . .

{in the storm}

This was taken by my iPhone on the way to Children's last week...

I know, I know, don't CLICK and DRIVE! But I couldn't help myself,

this was perhaps the brightest rainbow I had ever seen.

and for some reason it gave me a hint of hope...

for at that moment, I felt it was some kind

of sign... something good. 

It immediately made me feel very small and insignificant,

kinda like when I was a child and we would lay in the cool grass

and look up at the clouds... you suddenly realize,

you're just a speck on this earth, one of many really.

Getting off our exit, I was in awe of the colors that sprayed

down upon the buildings, we were getting close to the Hospital
and I wondered if the rainbow would reach there too...

This right away made me think of all our little Mito friends
that are currently struggling right now, and how I hoped that this

was some small sign that they would all pull through...
and go home...

oh how I wish that were true but
Mito has claimed even more little lives,

and many more mito warriors are
 fighting for theirs tonight.

It's so difficult at times to face the reality of this disease

and what it does to the human body.

I watch these beautiful babies change as they get weaker

and more sicker, not looking much like themselves anymore...

one organ after another, failing and needing more support.

Some days I feel as though I just cant take it,
I cant take seeing one more child suffer.

so many families, so much heartbreak...

feeling so helpless... and perhaps even hopeless.

What can you possibly say to a Mom that's watching
her beautiful child suffer and nearing the end of his long battle...

or 
the friend that aches to hold her baby in her arms again,
to see her sweet smile and to hear that once high-pitch little voice? 

and then I imagine the unthinkable...

Will that be our son laying in that bed hooked up to all those tubes

and wires someday, hardly recognizable and suffering...

and will that be me standing vigil and doing whatever

I can to keep him here with us longer...

will that be us being sat down and being told to just

"take him home and love him".

Naturally, I try very hard not to think of such things but

with Mito you cant help but wonder what lies ahead...

where we all will be in 2 years, 5 years,

will our son even be here in 10 years?

Some nights I lay in bed and simply cant

shake this feeling of such sadness.

I toss and turn and cant shut off my brain...

Then I look over at Jack, the dark outline of his

tiny body curled up and lying so peacefully,

as I hear the hum of his feeding pump and the
distant sound of his oxygen concentrator...

I think to myself, I don't want this moment to pass,

I want him lying next to me forever, then I snuggle closer 
to feel his warmth and his sweet breath... clinging
to every detail, in fear I'll one day forget.

I tell myself, I love this little boy far too much for him
to leave this earth before me...

just how will I cope...

what kind of mother, wife or woman will I become...

how will I live without this little boy...

without his silly smile, the corny jokes,
and the feel of his skinny little arms
wrapped tightly around mine...

in those last moments,
how will I be able to say goodbye to all this...

Ill be so broken... just broken.

Pure sadness will completely overwhelm me,
but then I realize... my child is still here.

as crazy as that sounds, during those dark times,
it feels as though I'm already in mourning...
 mourning of a different kind though,
but in someways, in that moment,
its feels just as painful.

I guess that's what this cruel disease does to me.


 I've been reminded by a few Dr's more than once
the last couple weeks, that Jack has a life threatening disease
and not to expect things will get better for him, as they say
"you'll need to plan on having more support as he gets sicker".

Its always a tough thing to hear as a parent, even years after a diagnoses...
and in my head I'm yelling, I KNOW THIS ALREADY! 
DON'T YOU THINK I KNOW THIS ALREADY?!

but with each word, my heart breaks a little more 
and I find myself trying to hold back a floodgate of tears.

Today the progress of finding new treatments for Mito
is very promising, and maybe it's even leading to a cure one day...
but the reality is we all know that these things take time,
a lot of time and its often hard to get excited knowing that
our kids, the ones already here and fighting this beast...
 are running out of that time.

Recently while being asked to have Jack take part
in a study to monitor children with Mitochondrial disease,
she calmly said,
"you understand, this isn't to help Jack but for the kids after him" 

well that little word "after".... sigh. 

I know this is something I'm just going to struggle with.
I'm not going to keep myself from having those sleepless nights of "what if's" 
and I understand I'll continue to watch heartbreak all around me...

but I also realize how important it is for me to find better
ways emotionally to handle this diagnoses.  I'm not sure what that looks
like or how to go about it but I can't allow these heavy thoughts
keep me from enjoying the time I have with my son now,
not one minute wasted...

after all, he is here, life is beautiful...

and he is so lovely.