This is hard...

We are determined.

We are determined because we have to be but also because our son is determined.

Our son sat on the edge of the couch next to his sister, supporting himself, dangling his legs off the side and then slid off the side to stand. 

He needed a little help but the initiative was all his.

It has taken three years for this moment. 

Just the fact that at five he is still alive and kicking is pretty amazing on its own. 

Keeping him that way is pretty much a full-time job. 

When he goes ten days in a row having seizures, sometimes every 15 minutes, it can be a bit challenging just to get food and water to go down.  

Our son has a brain malformation that has caused developmental delays across the board. 

As a lovely side-effect, he has seizures. 

Between those seizures and the medications, we’ve attempted to use to control them, he has forgotten quite a bit of what he could once do.

He was once capable of pulling up and even cruising around the kitchen while holding onto the counter tops. 

He was delayed, but it didn’t stop him from much.

That kid is still in there. 

That same determined boy who didn’t let his delays keep him from anything is still with us.

You can see it in his face. 

He watches patiently as he tries to remember how to do something.

Sometimes it comes and other times it does not.

One night at dinner he reached over and grabbed a hold of the fork I was using to feed him. 

He didn’t let go for 10 minutes. 

I just sat and watched him try to remember. 

He will.

His recall is coming back. 

He knows that he knows how.

We learned long ago not jump at the first sign of an accomplishment. 

We don’t want to scare it out of him. 

Early on, anytime he would do something exciting we would clap or give an excited “good job!”, but that frequently startled him and he would stop. 

So now we sit quietly by and watch. 

We give each other a sideways glance that says, “Look! Look! Do you see what he is doing!?!?!”.

It is hard to contain emotions when the good comes.

It is hard to keep up our energy when sleep is evasive.

It is hard for our son to remember and for his brain to do what he wants.

It is hard when he takes one step forward and two steps back.

It is hard when our schedules don’t give us enough time.

But we are all determined and he will remember. 

He will do again.

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