Faith

I have always had a strong sense of faith.  No I don't go to church and well when it comes to the bible I know the basics. I know for some that's not enough but since it's my faith  and all  it works for me.  I have been so angry.  I still am, this anger is just probably part of me now. Iit was so easy to put the blame w/ God and sometimes I still do.  I have learned through talking w/ friends and family and even God how to believe again .

I have alway believed in a greater plan but in no way do I believe sick children are part of it.  I don't believe that I was blessed w/ this child just for him to suffer.  I can't put this on God because I don't think i could find it in me to faithfully follow a God that planned this for my son.  One of my very dear friends told me she doesn't believe God micromanages.  I don't think I could say it better.  Those words typed in a facebook message really gave me a chance to believe again.  Thank you so much Bethany for giving me back a little faith when I probably needed it the most.

I am a little stronger today even if the part of me that broke on December 15th never mends.  I know in my heart I have the strength and the compassion to handle this.  I feel that is God's plan that I was destined in some way to be there for a special needs person.  I was always pulled to do something maybe special education or something but I never figured out where I was going. Now I know. I don't think God planned on this happening to Robbie but I do believe he made me the kind of person that can be his advocate..

Advocating for your child is not for the weak at heart.  I have to go into every Dr appointment, every  IEP meeting, every aspect of his life ready to fight for him. I have to be the one to draw the line between DMD and childhood.  If his time is limited then it is up to me to make sure he isn't a science experiment that he is a boy not just the boy with DMD.

I have already changed some things.  He was receiving therapy outside of school every week and that just became too much for him.  I said we will do it every other week.  I didn't wait for a yes or no because it wasn't a question.   I decided that he can do his blood pressure checks at the pediatrician. This all sounds little but for me its a big step as I am not in any way described as assertive by well anyone.

This is a journey we can never be prepared for.  No one makes a baby with this as their plan and thankfully most parents will never face this battle.  It is really important to me that we remain normal.  That no matter what this disease takes from my family we stand strong together. I want my kids to have a childhood full of smiles and it is my job to make sure that is what they get.  I had such a happy blessed childhood and I want my kids to have that too.

Please don't let me mislead you I am still hurting and really I don't think there is going to ever come a time I won't.  Well once they discover a cure maybe but honestly I am different now.  I am equally more forgiving and less forgiving if that makes sense.  I have learned the power of the word no.  I have seen what happens when compassion is not offered and I have vowed to try hardest never to miss a chance to offer compassion.  I have always used the saying "Life is Short" now I understand the truth in those sentiments.  I don't break down  often.  That is so strange to me.  I thought if I was ever faced with something horrible I would be a mess but somehow I am not.

I guess the most important thing I have learned is to embrace whatever I am feeling.  Sometimes I am a bitch and that's okay because how could I not be angry sometimes?  If I feel sad I feel sad.  Sometimes at  Dr appointments I think they look at us funny if we aren't crying but we are like everyone else we have a family to raise and we can't lay in bed crying all day.  We do have times when we are like that but we have to be aware and remember what Drs say so we  listen intently and we cry about it later when the kids are sleeping and we can hold each other. They don't understand because most of them haven't been where we are.  Thank God they haven't because this is a place no one should ever be.