Duchenne life.
Not the best life.
But it is now our life.
So as we headed to our 'wheelchair fitting' appointment, it, for a moment, felt like just another day...in our new normal...
But for some reason...the closer we got, the more different it felt.
My heart had never felt so heavy.
The tears had never been so hard to hold in.
The loneliness had never felt so lonely.
And the reality of Duchenne had never felt more real.
Up till this moment, Duchenne was real, but not THIS real.
I had this idea that God was going to perform some big miracle...like He was going to provide some miraculous treatment for my boys and stop this disease from taking away ALL of their abilities.
But He has not.
yet.
And it felt like this appointment was just confirming what I didnt want to believe...
the fact that my boys were REALLY loosing their ability to walk.
like for real...loosing their ability to walk.
and I dont know about you, but that reality is a really freakin hard one to have hit you...especially while you're driving to an appointment with all three of your babies in the car...
watching you...
listening to you...
All I wanted to do was call my mom.
Actually, all I really wanted, was her sitting in the front seat next to me.
But that seat was vacant. As it always is.
And my heart was nothing more than broken. As it always is.
So then, all I wanted to do was scream, swear, cry, and drive my old P.O.S. mini van straight off a cliff right into Heaven.
You know what im sayin?
Life is seriously so unfair.
These beautiful babies have this horrible disease and each day it seems to get closer to the inevitable end.
I couldnt help but think of all the other Duchenne moms who have been in this exact moment...driving to their sons' wheelchair fitting appointment...
Sure it might not sound like that big of a deal, but when you are the mom driving...it is.
and I couldnt help but be sad. so freakin sad.
The type of sad like no other.
and as we made it into the waiting room, I was still holding onto my tears.
thinking all the things.
feeling all the feels.
The kids though...HA...
just playing their ipads...not a worry in the World...not even phased by our reason for being there.
and when we went back, they werent even shaken by what we were discussing. They actually thought it was pretty cool.
Jax said it was like choosing the colors of his own "Iron Man" gear.
And Mason was just concerned if there would be enough space for his "JESUS" decal.
See, these sweet boys of mine only seen it as 'just another day'...
I was the one with the issue.
I am the one who fails to fully embrace and trust...just another day. everyday.
Sometimes, I feel like my heart just cant handle anymore grief, anymore sadness...
anymore Duchenne.
I wonder if it really will all be worth it.
I wonder if perhaps Jesus already returned, and we are actually in Hell.
You know what I mean?
Im sure I am not the only one who has ever thought this.
satan is good at making us wonder.
making us doubt.
he is good at making us think it isnt worth it,
he is good at reminding us how awful and hard it all is.
he is good at making us think God isnt.
And I hate to admit, often times, I find myself believing his lies.
Especially as I watch Duchenne take my boys.
yes, satan is good.
but so is God.
God is good when I see my boys reading their bibles.
God is good when I hear my kids laughing together.
God is good when I see my kids eager to give and to serve others.
God is good when someone smiles because Gracie says hi to them.
God is good when a stranger offers to help me lift a scooter in my trunk.
God is good for what He is doing IN us, not for what He can do FOR us.
And I hate to admit it, but God is good even in Duchenne.
Because of Duchenne our family loves better and hopes bigger.
And because of Duchenne, today is just another day...we live fuller.