Hard Conversations

When Jon was diagnosed, our kids were 5-14. We were grateful that Jon was so healthy so we could tell them and they could ease into reality.

What do you say to these sweet kids whose lives are going to be turned completely upside down? The truth.

One Sunday afternoon we sat our kids down and told them this:

Dad's brain isn't talking to his muscles anymore because the neurons are dying. When that happens, dad is going to get weaker and weaker.

That means that eventually dad won't be abel to walk anymore, and need a wheelchair because you need muscles to walk.

You use muscles to eat, so eventually dad won't be able to eat anymore and we'll feed him through a tube in his tummy.

You need muscles to move your arms, so we will need to help dad do things like get dressed, eat, brush his teeth and shave.

You also need muscles to breathe, so eventually dad won't be able to breathe anymore. He might use a machine to help him, or he might not.

Eventually, dad's body will stop working. He will die.

"I hope dad doesn't get sick for 15 years, that way Katie will be twenty."

It will probably happen before then.

"How will we know what daddy wants to eat when he can't talk anymore?

We will probably feed him through his tummy then.

"Mommy, we will have to go to daddy's funeral?"

One day we will, but that's not for a long time.

I expected our kids to struggle. I thought that they would be fine when we told them, but we might see them start to act out. Kids are amazing. Their faith is simple and pure. They understand (in their own way) what is happening, and they are OK with it. They just love their dad...regardless of what he can or can't do.

Since that day, they have seen a lot of changes in their dad. There are new things everyday that are hard or impossible for him to do on his own. There have been some turning points where they've been forced to see reality. They are still OK. In fact, they are thriving.