SMA

From time to time, I hear about the passing of another child with Spinal Muscular Atrophy. Tonight I read about a boy named Jarred. He was 9 years old with SMA Type 1 and passed away a few weeks ago. With each child, my heart breaks all over again, because I know exactly what it is like to lose a child to this disease. I know what it is like to go to bed that night, broken and knowing nothing will ever be the same. I know what it is like to wonder, "Where do we go from here?" No words can express what it feels like to lose a child, whether it be to SMA or something else.

Tonight I was looking at the Children's Cancer Association web site, and they have a Hero Kids section. So many kids, including Jarred, who fight daily battles with SMA or leukemia or a number of other horrific things. It's amazing and mind-blowing to me to see the courage and strength and determination of these precious children who are dealing with their fragility and pain and mortality on a daily basis. They show us what life is about, and truly what it means to be strong and have courage. They inspire us to be strong no matter what hand we are dealt in life.

http://www.childrenscancerassociation.org/hero_kids/

When our Glennie was diagnosed with SMA, and throughout his life and even now, me and my husbands favorite verse is Joshua 1:9-

"Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go."

Words to live by.