*DISCLAIMER: THIS POST IS NOT FOR THE WEAK, SELF-RIGHTOUES, or JUDGMENTAL.
*Do Not Read if you are perfect, lack empathy or never say bad words.
Recently, I was asked, what I thought could possibly be worse than Duchenne, and for the life of me I just couldn’t come up with a true and honest answer, because if I'm being honest, at that time, there was literally nothing I could think of that my brain could really come to terms with being any worse.
Duchenne IS the worst thing to have ever happened to our family...
To me.
Then, the second question, what about the tragedy of losing your family in a plane crash?
Wait,
What?
How could you ask such a question, I thought at first…
But then,
I thought for a second more,
And my honest answer came out, almost instantly, NO.
NO!
Not even THAT horrific and unforgettable, unimaginable loss is as horrible as learning, knowing and living with Duchenne.
Not for one split second. I would lose them over and over and over again if it meant I wouldn’t have to know Duchenne.
Duchenne, IS worse.
Way worse.
THE WORST!
And I know, you’re probably thinking, there is just no way it could be “THAT” bad…
Afterall, ‘they seem so “normal”, they seem so “happy” ….”it's JUST a wheelchair…”
and Im sure you’re also probably thinking how much worse something in your life has been... or is....
or so you think…
and I know this, because many of you have shared these exact words and thoughts with me….as if you could relate in some way…as if you knew…as if trying to 'help'.
ha. I wouldn’t even wish you to know this…duchenne. and none of it helps. its rude actually.
Many of you really believe your hard is the hardest, and that’s okay…I think that is human nature, especially in our current world and culture we must exist in…but let me just tell you, you have NOT TRULY met hard, until you’ve met Duchenne....shook its weak hand, wiped its ass. felt its tears. watched its heartbreak firsthand with our own damn eyes.
YOU HAVE NO CLUE!
Sure, losing my family has been unfathomable, honestly, I try to figure out how the actual hell I have survived living all these years, alone, without them every single freaking day…and I literally have no freaking clue…. especially since adding Duchenne.
There are simply no words.
I got nothing.
Clearly, God can't be a fantasy though…that’s for sure.
Yet, over these last few weeks, I have found myself learning about one thing that IS, indeed, worse than Duchenne....
And that is Duchenne, multiplied by TWO.
Trying to wrap our minds, hearts and life around have one child dying by Duchenne is fucking HARD, but to have two children now, OBVIOUSLY, in our face, dying by Duchenne...
UM….again, NO FUCKING WORDS.
Its complete BULLSHIT.
Its UNFAIR.
Its inhuman.
IT SUCKS.
ITS INRAGING.
ITS FUCKING WAY TOO HARD!
Yet, here we are....
Duchenne x2.
Only a few days before our sweet second born turned 11 years old, he took a fall off the freaking toilet, (ya, try and imagine, not even being able to sit of a fucking toilet) twisted his leg, severely bruised his bone and hasn’t walked another step since.
ya.
FUCK.
And you want to complain about your car not starting?
or your 100-year-old great grandmother getting to go to Heaven?
Ha.
If only.
I was finally coming to terms with Mason.
Now, we have two…. how do I come to terms with this?
How do we come to terms with this for our family?
We did NOTHING to deserve it, and we have NO one to blame for it.
We are just fucked, with no other choice than to keep fucking going…
its SO messed up.
Duchenne x2.
Two beautiful boys, who, ONLY seven short years ago only knew of life as typical boys…
>sports, trampolines, running, jumping, playing outside, riding their bikes, four wheeling, fishing, WALKING, STANDING, using freaking stairs…peeing on a danm tree...<
who, only 2,555 days ago, knew nothing of Duchenne and the unfairness of life and the cold, awful reality of just how fucking broken this whole existence of life and the world really is.
knowing this of seven years ago, i cant even imagine what it will be like seven years from now...
i cant.
and if im totally honest,
i KNOW, for a fact,
i cant survive seven more years with duchenne multiplied by two.
nope.
this is another cry to Jesus. I hope He is reading.
I CANT and I WONT.
these last 17 days of 2xduchenne, have hands down been the hardest days i have ever lived.
when i simply think about it, i again, have no fucking clue how I have done it all...NO help, NO family, NO support, NO sleep! It hardly seems possible, yet, here I am.
and as much as I want to blame God and curse His name, or pretend He doesn't exist at all, or just be so freaking pissed at Him, (well, I am...very pissed, and He knows it)...
i just cant.
because at the end of every single damn day, i literally have ONLY Him to attribute my abilities and survival to.
and for that alone, I have to have some tiny speckle of gratitude and in that speckle of gratitude, I am able to force myself to do the next thing that needs to be done...even if, duchenne is multiplied by two.