Sad...

A boy passed away.I don't know him. I don't know his family. I know his disease. I am sitting here on a Tuesday in the middle of the afternoon sobbing.  Sobbing for  a 20 year old taken from his family by a disease in my sons dna. We tell ourselves all the time that it can be different for Robbie. There is progress and research and they are closer then ever but the truth is we are just the newest generation of families fighting this disease and chances are the ones before us chanted that mantra too.

I am not trying to be negative. I'm really not.  I live my entire life looking for a bright side, hoping for a cure, and trying to accept the long, slow break down of my sons muscles. It is for sure a strange way to live life.  Learning to accept the unacceptable while praying and hoping for a miracle. At this stage in the game it is in mine and Robbie's best interest to remain strictly in the present.

It's strange to live like this. I almost never say "When you grow up..." because I am afraid to promise that will happen. I was so emotional yesterday I couldn't finish this post.  Muscular Dystrophy had taken a back seat for a few weeks, finding a home and getting settled had to come first but reading about the death of this boy it just hit me all over again. I read when  Robbie was diagnosed that we should take life 5 years at a time. Its good advice just completely impractical.

5 years from now we may need a  handicap accessible house.  I can't pretend that isn't something we need to prepare for.  The future is a looming black cloud in our lives.  We fight daily to ignore it but it is always there. I said before duchennes is the 6th family member we never planned on.  I see it every day.  I see Robbie slowly conquering the stairs while both his sisters blow past him.  I see the aggression from the steroids and it breaks my heart.  Its not fair.  I still carry so much anger.

I hate that this is happening, I keep trying to find a way to accept it but I just can't.  It's like I woke up one day and everything I had ever believed or thought was different.  I am living my worst nightmare.  some days I am strong and focused.  I read the medical research, I find hope in the breakthroughs, and I can tell my family this could be it we might be the generation to end this disease. Other days I can't stop crying.  Those days are the hardest.  I hate myself for being weak like that because I could miss something some happy thing I will need later.

Later is my enemy right now. Every milestone my children pass now is bittersweet.  Every birthday brings us closer to later.  I am constantly torn between wanting to hurry up and experience everything we can in life before its later and stopping to smell the roses and enjoying the simple things.

I hope the research and breakthroughs that are happening now continue.  That my son will some day get the chance to truly run.  That he will not lose his ability to ride his bike but gain the ability to ride it faster. While later is my enemy hope is my light.