Journal - Losses

LOSSES

It seems like this year we have lost so many boys to Duchenne Muscular Dystrophy.  Boys from age 10 to 48.  Even our two oldest men with DMD passed this year. All this seem so difficult - especially in the DMD Community.  When we loose one, it felt like we lost our very own.

Before I lost Timothy, my perception of grief was so different when a boy/young man died from complications of DMD.  I hurt, I grieved for that child.  But my grief and pain was NOTHING comparing to what it is like to actually loose your own child.  When Timothy past,  my grief, my heartache pain was so real. So painful.  My perception had changed.


Yes I had years knowing this time would happen, but when it actually happens, your mind, your grief, your heartache pain is so overwhelming. It is so beyond then anyone can imagine.  And now, when I hear of another child dying from this disease, it becomes more overcoming...it triggers...it hurts even more. your perception of grief and heartache pain has now change. You totally understand the heartache, the pain, the grief.

You feel guilty because you know you could had done more. But guess what, you could not. You properly cared for your son. You did everything you possible can to care for him and mostly did what you can to raise funds for that cure. The cure you wished and hoped for while your son was still here.  A cure, that may never come and the sad part, more boys may have to die before a cure can happen.

Today, I learned the truth of Timothy's death. Something that was never told to me during his suffering and his death or even after his death.  Why didn't anyone explain this to me. Why didn't they explain this to me before he passed. I could have explained to him what was going on.   Tim's death was due to the mercer, the sepsis the infection in his blood that cause him not able to breathe.  In his nostrils and throat. Its why his face, his throat, his tongue, his lips, his ears were so full of fluid but mostly the infection.  Pretty much he suffocated.   The oxygen could not get to his organs, hence why they shut down. My son suffered greatly before his death in a 48 hour period.  And probably more so after the CPR, that caused injury to his lungs, his ribs and most likely his heart.

I know this may not sound right to some, but even as a mother of a DMD son and watching what it did to him, I have to say this and I know God will forgive me for feeling and saying this but I think even probably had thoughts or feelings when He watched his son suffer and die....for all our sins and disease...but FUCK YOU DMD.

I am thankful that Timothy was in my life, even for the short 25 years. He taught me so much how to appreciate life for what it is and the goodness that can come out of it.  His death really opened my eyes to what Jesus had to suffer.  His death helped make me appreciate the goodness that God has for me. Timothy was such a loving, kind, sweet, friendly,humble man who i believed did love God.   i think in the end he opened his heart to God even if during the years I got the feeling he was an atheist.  He talked it, acted it.

But then I got him to listen to Joel Osteen with me on Sunday mornings..and he saw how much I was changing, going to church and my thoughts/thinking changed.  I think and pray it was through that influence he knew there was a true God.  Oh I pray that he did give his heart to God.  I know six months earlier at his memorial service, he was "baptized"  anointed and hours before he died, Pastor Dan was there with him to pray and he prayed.

I miss Timothy, and the best way to keep his memory alive is to do go unto others with the same disease. And that is my goal. I pray that God will help, guide, and protect me and make this happen.

Happy Sabbath!