I got the email yesterday afternoon from DuchenneConnect.org confirming that Roman has the exact same deletion as Chase, exon 45-51. That confirms that he does have Becker’s Muscular Dystrophy. We had assumed this since April when we got his CK results back showing muscle breakdown, but it was still a hard pill to swallow getting that confirmation.

I sat quietly for a moment and let it all sink in while I listened to the boys playing games in the background. I looked up and saw Roman’s little face, he had his serious “puckered lipped” face he gets when he is concentrating on a game. For a second he looked up and caught me looking at him and he gave me his big “light up the room,” smile and went back to his game.

Then I asked God, “What do you do when you receive confirmation that both of your boys have Muscular Dystrophy?” I was sad, but I soon felt the urge to get up, so that’s what I did. I got up and finished making enchiladas, I took Chase to Tae Kwon Do, we came home and ate dinner, we wrestled, we made a batcave in Chase’s bedroom, then we got ready for bed. Life went on just as it did before, and we had a really good day.

I’m not in denial by any means. This is what God has put in front of me and I do have the choice to curl up into a ball and feel sorry for myself and the boys. Believe me, there is a small part of me that has that desire. I just know that one of the awesome responsibilities we have as a parent is to model for our kids what to do in difficult situations, when life knocks us over the head and we can’t see straight. They have seen me cry, be sad, be happy, be mad and fall down, but I have to focus on them continuing to see me get up. My husband and I will serve as a model to them how to embrace God’s path, with all of it’s beautiful flowers, as well as its gnarly thorns.

The boys are doing great right now. We had an amazing Fourth of July weekend full of family time, water balloons, pizza, fire pits, marshmallows, and swimming. Madison spent the majority of the weekend with us, which is a rarity right now due to her crazy swim schedule, and the boys just loved having their “sissy” around.

Roman remains symptom free. Chase still struggles sometimes with the leg cramps and his hands not doing certain things quite right, but we are slowly figuring out patterns and ways to help. I know I have said this before, but we continue to try to just focus on “right now,” and try not to get caught up in what “could be” in the future. I know that there will be times when they will literally and figuratively fall down, I just hope and pray they will continue to hear the voice that says to get back up.

Trying on my swim cap

Dodging water balloons

Fourth of July