Stop putting Things on Hold...& Just do it!!

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.

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Comment by Dee on November 15, 2009 at 10:13am
Thank you Sharon for sharing this...THIS brought be to tears. The reality of our lives that stands before us and yes, it is the denial...afraid to accept what might be. thank you for sharing this with us. I apprciate your support...& getting it...understanding...knowing what it is that we all are talking about. Safe & comforting hugs, Dee
Comment by Sharon Malone-Dugan on November 15, 2009 at 12:52am
Dee...I guess one could say that I am re-entering the world of PPMD. My ex-husband and I were a part of this community when it was first started up by Pat years ago; however as our lives changed, and we divorced and I became a single mother to 3 children, I found I did not have the time to devote. And maybe that is not all truthful either...there was a part of me that could not be involved in the community. It was too difficult for me to hear about what will come as my son got older; I either wasn't strong enough to hear it or I was in denial. I am sure it was a little of both. As parents we must do what is best for us and our children to get through this horrendous disease; and as selfish as this may sound, years ago, I could not be involved nor did I ever get involved in such a community for my son. I remember when the MDA telethon would come around, I would become so angry. Why did they only take this time of the year to focus on this disease? Why did they boast about helping families, when they never really did? Why did they show these beautiful family videos with their sons with DMD? To raise money ..yes, I knew that, but it seemed so wrong to me. My way of getting through our life, right or wrong, was to handle it solo...on my own.

My son Erich Vincent passed away on Ocotber 16, 2005 at age 24. Oh and how I agree with you..why would God give us these beautiful sons, only to take them from us so early in life? Angry, yes, furious is more like it. God doesn't have that right to do that.

Our life with Erich, I would not change for anything in the world. He changed the world and made it a better place just by being in it. He was an angel. He had a dry sense of humor; a loud and infectious laugh; a beautiful and wonderful love of God and his Catholic faith and made each of his days count. But he also had so many hardships that we as parents cannot take away as much as we want to. It is so hard to watch as our sons are made fun of by mean, ruthless kids who have no idea the devastation of what they say causes our sons; to watch as they go off to school knowing you cannot protect them when they fall down or wipe their tears when they cannot keep up with their friends becasue their little legs just dont move that fast; when all they want to do is run in the park and catch a ball but no matter how much you pray to God for a miracle one doesn't come; but they dont understand; all they want is to be normal. And birthdays, they are suppose to be one of celebration, yet every year Erichs came around, inside I dreaded it as that was one more year of his life gone and I did not know how many more he had left. What a horrible thing for a parent to be thinking when he was so happy to have a birthday. We cannot keep our sons young and protected...they begin to grow up and although their bodies are weaker, and they may walk slower, or may be in a wheelchair, their minds and emotions are that of a teenager; and who prepares us for this?

I have 2 girls who are and have been in high school and it broke my heart when they would come home crying because some guy didnt like them or broke up with them but I knew they would be ok; but to ease and make better the broken heart of my son because of a girl or because he could not go be one of the guys just hanging was too much to bear at times. This is when we feel so helpless. All I wanted to do was take him away from all the heartache, but I could not, life goes on and as much as we may hate it at times, we go along with life. All we can do is be there for them and comfort them when life becomes so hard for them. Oh but they do have so many many good times too. All the family vacations, football and baseball games; family dinners, their music and books and movies...that is past of their normalcy and I know Erich loved each and every moment of those times. It is always our prayer that those good times wipe away the bad times for them and I beleive if we can give our sons more happy times than sad times that we are doing a fantastic job. After we put our sons to bed, we can cry, scream or whatever else we find that works, so by the next morning, and be thankful for each new moring you have, we can begin a brand new day and help them live their life to the fullest. As a mother of a beautiful yong man who is now with God, I could write forever about Erich, good and bad times, heartaches and laughter...because it was all a part of our lives. Life did go on without Erich but it will never be the same; we have had to find a new way to live life, as they say a new "normal", and that is not easy. We struggle daily to live this life without Erich and yet I believe it his Erich that helps us each day...he is still here with us ...always.
Comment by Linda Bailey on November 13, 2009 at 9:59am
Wonderfully put. Just Do It!
Comment by baljit kaur on November 10, 2009 at 3:30pm
Absolutely beautifully written.I too was in tears.
All the best to you and your son.
Comment by Cori on November 10, 2009 at 1:27pm
You are an amazing writer and this is so true...brought me to tears. Thank you for posting this, I think at times we all need a reality check, and your words were kind, honest, and beautiful...Lots of hugs for you and your son.

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