So the last couple days Zach’s seizures haven’t been good. Its left Stephanie and I exhausted both physically and mentally. We’ve both been up late into the night and very early hours trying to help our boy fight these episodes.
It’s got me thinking about the other side of Zach’s condition. Its the cruelty of it, Steph and I aren’t special, we weren’t both gifted super powers, we are a normal couple who met at university, got married, and decided to have kids. We never knew during Stephs pregnancy or at birth that our perfect little boy would be terminally ill.
Tell me what parent wishes to watch their own child suffer so much, to experience unimaginable pain that you can’t take away. To watch them be deprived of the basics, the ability to eat and drink, walk and talk, to be told there is nothing you can do to save them and that you will outlive them. To know that given what their life entails, that they should die before you so that you can ensure their life was as rich and fulfilled as it could possibly be and that they received the best possible care until the end.
That is our reality. Somehow Steph and I have to put on a brave smile and continue, and one day we will have to explain to our second son L what was wrong with Zach or why he lost his older brother.
Help me spread awareness of this horrible condition, help me do the only thing I can do for my boy and fight for him. Zach goes through unimaginable horror but he does so with a smile, he hasn’t given up, so let’s not either.