It's like walking around w/ a bullet hole. I can put a bandage over it so no one sees. I can pretend it doesn't exist but at the end of the day it is still there.
Every single day I am confronted w/ the realities of muscular dystrophy. The fear of the steroids changing him, the calve muscles that keep getting a little bigger, the bills, the logging on to facebook and reading of another boys passing.
I feel stuck in a way. Some days I can go a whole day with only normal stuff on my mind. Those days I start to think I have reached some level of acceptance but its just a front just me doing the things I have to do and ignoring the bullet hole. I am not sure I will ever find acceptance, I mean why would I?
It's a strange feeling half normal/ half grieving. I used to be a silver lining shipper but honestly I don't really believe there is always a silver lining. Sometime something bad happens and it's just bad. I mean am I lucky I get to be Robbie's mom? Of course but that isn't a silver lining. It just is. There isn't a dmd silver lining not yet at least. I am sick of being told I should grateful for what I have because damn't I am.
I know I am blessed to be a mom, to have the love of a good man, to have family and friends to count on but that doesn't mean I have to only feel those blessings. Those blessing do not outweigh the sickness of my child or make me less sad. I know people in this world are dealing w/ worst situations and I know people are dealing w/ better situations but that doesn't make mine any less tragic just different.
I parent different then I did before maybe I am a little more lenient and maybe that is because well I don't know how long I have w/ my son. I mean he has rules and boundaries like my girls do. We as a family are softer. We savor moments, we laugh, cuddle in bed and watch movies or T.V. I try to not yell much because I refuse to look back and remember all the times I was a hard ass. I spoil my kids a little. They are loved and hugged every single day of their life and their father and I are conscious of the fact that these kids have heavy loads to bear then we did.
I love my little family. I want my son to walk into middle school, to rebel and drive me crazy as a teen, to drive a car, to decide on a college or not a college to dream of a future where he can get married, have kids, a boss to hate, and an awesome mom to be grateful for :-). I do not know if he will have that and its a bitter pill to swallow.
