Tuesday, July 28, 2015

And Again I Say Rejoice

"Rejoice in the Lord always, and again I say rejoice."

Surely, she wasn't talking to me. I mean, doesn't she know all the things I have to deal with every day!

I felt the tears well up in my eyes as I sat through the Sunday service when Pastor Joy Caschetta talked about always rejoicing.

Grace was sitting, or rather slouching on my lap, and I tried to brush the tears from my eyes before they started to roll down my cheeks. I hadn't really wanted to go to church that morning, but I'd already set mom up to pick us up for Sunday School, so I rather begrudgingly walked out the front door.

As Pastor Joy went on to talk about the hardships Paul faced, and why it's so important to always rejoice, I sat in the pew, thinking about all the reasons that didn't apply to my life.

My whole world changed when Grace was diagnosed with INAD, and I would have to say there are few things harder than knowing your only child has a disease that will likely slowly kill her, knowing there's nothing you can do to help her, and having to watch it all unfold before your very eyes.

On top of that, we have to juggle taking Grace to speech therapy twice a week and physical therapy twice a week, once in Springfield, meaning every week I have to give up most of my only day off to do it.

Nope, Pastor Joy couldn't be talking to me.

But then she said it again.

"Rejoice in the Lord always, and again I say rejoice."

What could there possibly be to rejoice about?

My attitude hadn't really improved when Grace and I arrived home. In fact, I was starting to get a little irritated.

I started to cry, and Grace looked up at me from the bed and smiled, just as if to say everything's okay.

Those that know Grace, know she has a big, bright, beautiful smile, and is a very happy little girl most of the time.

Well, that was a start. If Grace was going to be happy despite her limitations and challenges, then I could find a way to be happy too, even if I didn't want to.

Sometimes, I catch myself in a pity party, feeling sorry for myself that no one could possibly understand what it's like to be faced with this type of uncertainty. But then I see Grace's smile, and I remember that nobody else gets the joy of being her mommy.

Yes, it's a hard job, every single day, probably the hardest thing I've ever done. And knowing there might come a time, she might not be able to offer her smile, is enough to make me want to give up.
But I won't.

I will get up every morning and put my feet on the floor. And I will find a way to rejoice, for all the gifts I've been given.

Kyle and I know that Grace is such a special gift, and her diagnosis gives us an even greater one. It gives us patience, understanding and the knowledge that we have to make the most of every single day we have with her, especially the good days.

That doesn't mean there still aren't hard days. But somehow God seems to find a way to remind me that I'm not alone.

There was the necklace that said "Believe in Miracles" that showed up on my desk one day at work.
There's a young girl so committed to raising funds for the INAD study that she made business cards for the bracelets she makes. Thanks, Kamryn. You have no idea how much that helped me this past week.

There are countless fundraisers throughout the community, helping us raise money for a study that might find a treatment for INAD.

There are friends and family who surround us with love and make sure that Grace has anything she could possibly need.

And there are so many reasons to rejoice and celebrate each and every day.

So, "rejoice in the Lord always, and again I say rejoice." I know I plan to.

1 comment:

  1. I know what I went through with Mom can't compare with your everyday journey with Grace. She is a precious little girl who has just began in life and Mom had 74 years with family and friends. She never complained about her diagnosis but took what it gave her. I can only hope to be half the woman she was because she was my angel. I hope for a cure for Gracie and so did Mom. Love you all.