Robbie said DaDa for the first time at an Applebees in Florida. He loved eating from his first bite of food and it used to be like a full contact sport getting food cooled and on his plate fast enough. When he was 2 out of the blue one day he gave me a huge hug and then said I want to kiss you mama. He loved Mr. Rogers when he was 2 and when he turned 3 he was all Toy Story all the time. He was scheduled to be born I think November 16th but he came November 3rd. Robbie loves to push my buttons and he does it w/ a grin. Robbie has DMD and I don't know if he will ever be an uncle, have a best friend, get a 1st kiss, or a 1st heartbreak.

Remember how I was all into the sometimes? The last few days weren't so much of a someday. All 3 kids were getting over a yucky virus making them all kinds of cranky, plus yucky gray rainy weather and everything caught up to me again. Now Shelby and I are both sick making our home super fun right now.  I just want to scream sometimes.

Words like wheelchair, ramp, and lifts are now part of my daily vocabulary. I hate giving him steroids and I spend my day looking for a side effect. Every time he falls I barely hold my tears back. He told he wants to be a policeman when he grows up. Kelsey asked if he would be an uncle to her kids when she has them. I said yes but in my head I was screaming maybe.

I love my kids.  They have filled my life w/ a joy i didn't know existed.  The only real life goal I ever had was being a mom.  I didn't know it would turn out this way but being their mom is a gift I treasure.  I am determined not fail them now.  I don't want any of my kids to have a life of sadness.  I can't protect any of them from the reality of this situation but I can make sure its not the thing they remember from their childhood.  I am pretty confident a cure or a partial cure or something is going to come out in the next couple of years because well it freaking has too.

We are taking our kids to Disney World this spring.  We weren't going too.  We thought we should save money to move closer to our families and while that is still a goal, its also important that we spend time just being a family having fun.  Disney World has been a huge source of fun for us and I think it will be healing for all of us.

I got my packet from the MDA today.  Sort of comforting and heartbreaking at the same time.  I feel like everyday we get closer to a point where we will have to tell him.  How do you tell this sweet little kid that his future is practically nonexistent. I mean he has a future but not the one most 5 year olds dream of. I dread telling him, I try not to think about it but he isn't stupid  and he's going to ask questions.  I think it is really important that we are honest w/ him.  He needs to trust us and he needs to know that we hurt and we hate this too.  He needs to see us fight for him so that he will fight for himself.

Speaking of fighting... Shelby, Me, and our kids along w/ a bunch of our friends are participating in the 2912 MDA Muscle Walk.  We are raising money in honor of Robbie.  The MDA is one of the first places you contact when your family is given the kind of news mine was.  Please help our team reach our goal of $1500.00  Just click on my blue icon.