Dream

My little boy dreams of being a cowboy, flying by himself to see his grandparents, and growing up. On December 15th, I feel like he lost those dreams before he even got to reach for them.  I hate feeling this way. Sometimes when we are at a therapy appointment and they are talking about how much he is improving walking up the stairs i cry, because it doesn't matter eventually he wont even be able to do it all.  Then i hate myself because i don't want to give up on him.

There have honestly been moments lately where for brief moments I have forgotten what is happening.  i feel like those moments are are always being stolen by him falling, or call from the doctor, or an ad on a website.  So glad google keeps track of my searches so I can be bombarded with DMD ads all the time.

Sometimes I dream that there is a cure or something that slows this down that gives him more time.  How I wish someone could fix this before he even needs to know.  I still I just don't understand how this happens.  Why it is happening to my family or how I will ever come to terms w/ it.  People tell me it will get easier but right now I can't see that.

It's simple I do not want Robbie to die slowly while I sit powerlessly on the sidelines.  How does a mother accept that?  The little boy that just walked in my room at midnight because he missed me,he deserves a life. How can God not see that? Yes, he can be a pain in the butt, he can push buttons, and he can whine, but he is also sweet, loving, and adorable.

I used to dream of the future but the 1st thing you learn when a simple test takes away your child's future is that your families life is not measured like that anymore.  We don't have a past, present, and future. Only a present.  Life is too short to hold on to old pains and the future is to scary.

I wish there was more I could do then a blog and some charity things.  I wish I had some kind of genius medical gift and I could cure all the little boys and give all the mothers their smiles back.  I know I miss really smiling.  I miss feeling joy.  I miss my faith.  I miss my little dude's future.  I miss the daughter in law I will likely never meet and the grandchildren i won't get to have. Mostly deep down I dread the day he won't be able to offer me his fantastic hugs.