Forgive me if I don’t freak out.

Additionally, don’t think I won’t if it is what is required.

This is not first time nor will it be the last.

This is our life with our son. 

He is going to have some pretty bad days. 

These days are measured in seizure counts, gap time between those seizures and ounces of fluid/food.

We don’t have the energy or the time to do anything other than what we have to. 

This is the theme of our lives.

We have to temper our pace and our emotional responses to the bad days. 

They will keep coming.  

We manage our expectations always. 

Somewhere in the back of our minds, we're always working on the worst case scenario emergency escape plan. 

The minute we find ourselves not proactively thinking ahead is the minute that something will happen.

We are not the only ones who live like this. 

We keep pretty awesome company.

Our friends and family members may sometimes cringe when we tell them how our child is doing with a near expressionless face, that only occasionally lets them know what we are feeling or thinking.

So what is it we feel? 


So what is it we are thinking? 

Hold on, here we go.

Seriously, when you consider all possible courses of action when the bad days come.

This is the best we have.

At first, I used to try to show an appropriate response or at least an expected one to the folks who would ask how we were doing. 

Well, it’s pretty difficult to explain an absence of emotion in a difficult situation as it turns out.

It’s not that we don’t care. 

Quite the opposite as a matter of fact.

We care so much that we cannot be bogged down in the midst of caring for our children by allowing any other type of thought or feeling to creep in.

The days will keep coming, the good and the bad.

We must build a mentality that will last. 

One that can enjoy the absolute euphoria of a smile, laugh, movement and then be prepared to deal with 100+ seizure weekend the next.

This is life. 

It’s good and we will be alright. 

We have to tell ourselves this so that it has some chance of being true. 

I think that is true for all of us.

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