Last weekend

Lately I can't get the "last weekend" Out of my mind. The last few days before I was shaking in a neurologist office. I keep waiting for to feel like I did that weekend. Watching my babies collect candy at a Christmas Parade, watching Home Alone, drinking Peppermint shakes from chick fila. Even though I was scared about what we would hear that Thursday I was still hopeful that I wasn't seeing all the symptoms.

The 2 office visits a week apart, the weekend spent fighting trying to will the CK level lower, the finality of diagnosis is all burned into my memory. Moments I would love to forget yet I never will.  Everything was different after that week.

People are often surprised to see us laughing and carrying on with life. My mom even says all the time how we keep laughing and living life. It's fake. I mean I forget sometimes in the moment but trust me DMD rarely allows me to push it to the side for long.  I fight so so hard just to wake every day even 2 years later. I could use a million words to explain the way this hurts.  Every single day it's like waking to that news over and over again. Its like being stabbed in the gut and every day the knife is a little more dull. It's not shocking anymore it just is. I don't know if that's better..

I want to find a way back to a God I can't help but feel let my child down.  I struggle every day to lead my children to God but it's so hard for me to believe.  How can something so powerful just sit back and watch?  I just can't see past that. Maybe my faith was never all that strong but i sure miss what little I had now.

Sometimes I wonder when or if I will ever feel like Nicole again.  I once told someone I was happy at least once a day. Truth is I still feel happy at least once a day but it's hollow. It's being happy in spite of circumstances instead of just happy.

I can take my kids to a parade, I can watch Home Alone, I can drive an hour to Perrysburg to get that shake but it will never feel like that last weekend.

I just want to add to this because I think we all forget. In spite of DMD and everything else this last 2 years has brought to my life I still try to remember how lucky I am.  Bad things happen to people every day. Life can just up and change w/o any warning. We have to find a way to stop judging so much,to see past our own hurdles, to let go of anger, to forgive.  All I know for sure is that this life comes w/ no guarantees and what looks greener is often just good fertilizer but the same grass.