I joined a few new Facebook groups recently -- both aimed at helping spouses/caretakers through a SCI or through another debilitating disease.

Reading other people's stories continue to put our life into perspective.

"My husband had a stroke... emotional support is a one way street... I grieve for the person he was before the strokes... "

"I am so tired of training caregivers... I am so very tired of all of this.."

Some of it is hard to read, knowing caretakers are so miserable and finding no piece of mind.

Some of it is comforting, knowing that others are dealing with a lot of the same daily issues and challenges that we do.

I can't imagine trying to do Jimmy's routine all on my own. I'd be broken. I'd do it -- of course I'd do it -- but I'd be wary and ill-tempered. More so than usual...

People we continue to run into at Shepherd tell me stories of not having nurses. 

Surprisingly for me, a tough scenario to see is a mother at therapy, day after day with her kid. There were a few people who went through with us who were high school and college-aged.

I haven't felt the feelings a mother feels, but I know what's there. And I know how a mom hurts for their kiddos. 

My life as a wife has certainly changed. 

Thankfully, I'm not completely broken -- only slightly.  But it seems to be fixable. I continue to grieve. Memories still sneak up on me and shake me. 

But it's happening less and less.

It's funny. This week, I had a really good talk with my therapist. I hadn't seen her in weeks because of so much happening. I told her how I cry less when I go to bed alone every night (that's when I really tend to miss our old normal).

And, I told her that being not as sad -- is sad.  It means I'm getting used to things... slowly.  I realize what's happening and I think I don't want to get used to things. I still want it all to go back.

It won't. I know. But, it's a battle between the ole brain vs. heart. 

(Brain) I know it won't go back, so deal with it and move on. Live. You still have a perfectly good life to live.  (Heart) But I really want it all to just go back. Can we just go back and do one thing differently so the outcome maybe would change?

My brain has since figured out that our new life brings suffering and sacrifices. It just does. I will have to handle how to suffer and still live with happiness. I have to do both.

I know now the suffering, grieving and healing will be around for a long, long time -- if even in a small capacity. But here's the interesting flip side to this: I have learned that finding tiny joys are key, because getting large leaps in Jimmy's healing just ain't happening.

Finding tiny joys in our new life is like a freakin' scavenger hunt. It's like, okay, there's still life here somewhere but we have to find it on our own.

Luckily, my bud and I are good at that.

We always made a good team.

We're like 7% through this thing, but it's a good, solid 7%. 

The shaky, gravel road isn't as unbearable as it used to be.

Doesn't mean I'm not death-gripping the steering wheel with the radio turned down and my headlights on -- even if it's daylight.


  1. I read your blog here and there and you are utterly amazing. I don't know that I would be so giving and selfless if this happened to me. I love your love for jimmy. Stay strong and stay positive. You two are beautiful and amazing and so inspiring. I love you recent pictures!


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