IF you are new here to the PPMD community, or even if you are not new to the community, you might noticed the set of photos that we as parents share of our boys.
Look at all those faces. They are smiling. They are innocent. These are the faces of our boys who has their mom and dads and grandparents, uncles and aunts, siblings and cousins that fight to end Duchene. They fight for their lives, because of a disease that robs them the ability to do tihngs for themselves. While many stay strong, live longer than expected, many are taken far to soon.
Every day as parents we struggle to give back to a community. We work hard to raise the funds. We work hard to advocate with the higher beings. We beg God for mercy. Yet, this one disease doesn't get it and keeps robbing these innocent faces.
Every day, when I awake or hear Tim call me for help, I'm thankful he is still calling out my name. But his poor 20 year body is slowly slipping away from him...from me. I often lay on my bed weeping -begging God for mercy for this boy's life. God gave him to me for a reason. I'm still trying to figure that out. But why would God give me a boy that He knew He would take away eventually? What lessons are, we, as parents of children with such a disease, are we suppose to learn? What is it that God is asking us to listen to? What is our purpose in life? To be the chosen parent to care for this lovely face. Why give and then take away so young?
We often don't know the answers to all the questions. I do know that I must have my son prepared for those pearly gates. I do know by being with him everyday is teaching me patience and to love and care for those around me. Is God testing my faith in Him? Is God testing Tim's faith in Him? Is God testing YOUR faith in Him? Like me, are there times you are just angry at Him? I know I am. But there is a purpose for everything in our lives. Sometimes we are just to blind to see it or deaf to hear Him. I mean, there is no way for all of us knowing that somehow in our prior years that God was someway preparing us for this gift?
I am sad and mad becasue this disease, like cancer, eats away the innocence.
When you look at your children's faces, what do you see? While you are sitting down right now reading this, pull out paper and pencils and write it down. What do you see in your child? Look into his eyes if you can and write it down but write it in your heart, and take a snapshot of that, and save it. Grasp it and hold on to it.
It seems this disease puts our lives on hold too. It not only robs the boys of their livilihood, it seems to also rob some of the things that we are use to doing. Its like everything is put on hold. WELL...I'm NOT going to let it put my life on hold or his anymore! Why? so it can win?
Recently while trying to put together an special event that I know I am good at, I was told to put it on hold for now. The explanation was reasonable and made sense. However, I can't tell my only child to hold on until next year. there are NO guarantees for tomarrow for any of us. I need to do something somehow to help save my son's life and I need to something that I am good at. Everything else I tried just didn't work. Sad as it may be. So why do I to put something on hold when my son's life might depend on it. YOUR son's life might depend on it as much as any fundraising event that any other parent initializes or participates in.
What would you do? Hold off? Or challenge it ? It's YOUR son...that innocent life...that beautiful smiling face that looks at you. Would it make a difference? Can it make a difference? Don't you think you have put enough on hold for now already?
The faces of our boys and girls with a disease that robs from them are part of our world now....what is there to put on hold when yet a cure to come will not save them "tomarrow". Are we going to put hope on hold? My son deserves more than that. Doesn't YOUR son (or daughter) deserves more than that?
Think of Josh...Kevin, sadly maybe even Cody, and the many many many more out that whose lives were put on hold due to a stupid disease. Stop putting things on hold...and Just do it! For you and your famiily deserve better and more than that even during this tough times. Just do it!
God will take care of the rest.