But I feel so much like I am failing.
Failing at being a mom.
Failing at being a friend.
Failing at being happy.
Failing at following Jesus.
Just failing at life.
I feel like a complete failure and I cant help but blame Duchenne. And God.
I try so hard.
To Be Positive.
To Be Brave.
To Be Strong.
To Have Faith.
To Trust Him.
But I have never been so tired.
So worn out.
I just really dont know what to do anymore. And to think about it all just getting harder...it just hurts. I was NOT made to be a caregiver. I actually have NO desire to be a caregiver. Yet, here I am giving more care than I have to give. Don't get me wrong, I LOVE my kids. But as a mom, I was most excited to raise them and get to watch them move up and move on and start doing their own things. And because of this awful disease, I dont get to do that. So in the trenches I must stay...just waiting for Jesus to return. For it all to be over. To be with my family again. To watch my boys run and jump again. To make some sense of all this suffering. Isnt that sad, I am just waiting to go home.
To go to Heaven.
I think when we first got this diagnosis, I thought God would have our back a little more...like I really felt like He was going to minimize the decline for my boys just a little...like it wasnt going to be THAT bad, like I have already done enough tragedy for Him...He would never give me that much more to deal with...But its been just the opposite. And honestly, I am so pissed.
I feel like I could be a Wack-A-Mole....
Up to the sunrise, devotional in hand.
WACK, back down as I watch Mason try to get off a patio chair.
Up to the sound of good worship song.
WACK, back down as Jax falls in the middle of the kitchen just because he cant stand for another minute.
Up, to get to church.
WACK, back down as the boys have catastrophic meltdown due to high dose steroid treatment.
Up with the beauty of the mountains on a lake.
WACK, WACK, WACK, as I watch my boys struggle to do anything fun on our new boat.
WACK, WACK, WACK, as I watch my boys struggle to do anything anymore.
WACK, WACK, WACK, as I am reminded how few people actually give a crap.
WACK, WACK, WACK, as I realize how much life really sucks...especially mine.
WACK, WACK, WACK, WACK, WACK, WACK. WACK. WACK. WACK. WACK. WACK. WACK.
And where is He? I am His child. He is capable of splitting a sea...yet He cant just give me a break. He cant just heal my boys. He cant just make anything easier for me? For them?
HE CANT?!?! HE WONT?!?!?!
Its just not fair. And I am just so pissed. And so tired.
What is there to learn from all of this?
Except for the massive pain I carry in my heart every second of everyday...
despite how hard I try...
to just live.
despite how hard I try...
to stay up. to defeat the WACK.
I keep trying.