Today was for Cole. We had a basketball tournament with his first game beginning at 10:20 this morning. He ended up playing 6 games!
We started out with a win our first game followed by a 2 hour break. The next game was a nail biter with a tough loss in a double overtime.
We would then have to battle our way back through the bracket to the championship game. And these boys fought back and with a lot of heart. And they won!!
While we were at the game the boys in Cade’s grade were also playing at the same tournament. We were able to catch some of their games while we were waiting for our next one. Which then prompted a conversation with Cade that I was really hoping to not have to have.
Cade was determined after talking to his friends that he wanted to join their team. He kept telling me about it. I told him we would discuss it, but he was determined. But then the worry kicked in for him too. He asked me what would happen when he fell. Not “if he fell” but “when he fell”.
It was hard enough to not know what to say or do in that moment while he was asking me about this idea, but now I also had to talk to him about the probability of his falling. It is really hard to not scream when you realize that this is just another reality of DMD.
So for now, this is how he spent part of the day while we were at the tournament. He really loves taking pictures so this was fun for him. We also had the added benefit of having Halsey there today. She is one of his very best friends and they spent the entire day together.
Today was also the day for a strange but good question from Cade. One of the signs/symptoms of DMD is enlarged calves. He looks like he has really muscular calves but that is not actually the case. Today was the first day though that he was asking what was actually there instead of muscle.
I had to explain that while it looks like muscle that the actual muscle he has in there is small. He didn’t understand why it looks like he has very muscular calves but he can’t climb stairs easily.
So while he was getting into bed tonight and I was tucking him in, he said to me that he probably wasn’t stronger than anyone even though he looks like he has really strong legs. I told him that God makes each of us differently and strength is a relative thing. Some people without DMD may not be very strong but they have other talents.
While he knows that God makes each us special, to my 9 year old boy, this was not an easy answer to accept. He really just wants to be just like his friends and play basketball. And that crushes this mama’s heart.
We will find something for him though. We brought up the idea of him being able to be a student manager for his friends’ team. We told him he could still sit on the bench with his friends and go to their games and practices. He thought that might work. And with that thought, I have hope!!