Friday, January 28, 2011


Life just keeps rolling doesn't it? I wake in the morning and hit the floor running. Some days I wonder as I try to pry my eyes open what will the day bring, will it be a good day, will the kids try to drive me crazy fighting over who did what? Will I walk through my day feeling scattered or blessed. In my life I find one thing to be true. No matter what life will just keep rolling.......

There are days when I think I may explode from the sorrow I feel for too many families..... cancer, SMA, surgeries, broken hearts... their days continue to roll too. Fear, grief, and pain.... I want so much to be a help, our lives have been right there in the trenches too. When we lost our sweet baby Mackenzie I truly thought I would just roll into a ball and stay there... You see we had just slid through our days being "good" keeping ourselves inside our own little box. Not really worrying about the lives of others. When I lost her my world was upended.

You see Mackenzie was my wake up call...... she was my angel, she still is. She keeps me grounded and always carrying for others. Because of her I "happened" upon the video that introduced me to the horrors of SMA, and connected me with some awesome families that dealt with the loss of their babies too soon, and some that are fighting to rid their children of the cancer that threatens to steal their children. She has guided my path as we opened our little store and given me a heart to live outside myself.....

After being told by someone that "you give away too much" I got into my car and turned one the radio. Matthew West's My Own Little World came spilling out.... I literally cried as I drove along listening to the words of the song. God doesn't always tap you on the shoulder sometimes he hits you with a ball bat. I KNOW we are doing exactly what he wants us to. I know that I will spend each day trying to do more.

SMA has impacted my life is a crazy way. Nobody in my family has had SMA, none of my friends have children with SMA. But, I have come to respect and be inspired by the families that fight the battle everyday. The children..... oh the children, they are so incredible. They are so bright, they live in a world that restricts their movement. They need help to do most things but they are the most brilliant inspiring kids. One look into their eyes and I know I need to do more. Winter is a scary time for children that have SMA. So many germs, so many illnesses, hospitalizations and those lead to more trouble. To date just in the month of January 9 children have died......... gone. How can we all not be tossing every bit of spare change to research for a CURE!??!

Easy math tells me that SMA will knock at the door of someone I know soon. If that is so then it will knock on the door of someone you know too.... think we need to find that cure?? 1 in 40 people are carriers of the disease.

1 comment:

Zoey's mom said...

Your Mackenzie .... just a beautiful gift,who's light continues to shine through your kind and generous and selfless heart.

What can I say about SMA?I had never even heard of it until sweet Gwendolyn was placed on our prayer list almost 3 years ago.And now through her journey and the journey of so many of her friends,I know one thing and one thing alone ... we need to get to a cure.We just have to.

Yes,Zoey has had her share,leukemia being one of them.Scary yes but there are so many protocols and treatments out there,with SMA,there is not.And that needs to change.

Penny,thank you for doing what you do.Which is stepping out of your little world,and giving so much of yourself for the sake of others.That is truly,beautiful.