‘Til death do us part, and beyond

So what do you do when your child asks when are they going to die?

Generally this comment is laughed off or perhaps some parents might even explain death. For me it was a question that slapped me in the full force right on the face.   

Chase is 9 nearly 10. He knows he has CF. Until recently, he didn’t know the implications beyond having a mickey button and being able to eat junk food.

But now he is beginning to get that he is different, a little different from the kids at school and from us.

When Chase asked me this week, as he has done before but probably not as seriously, I did what I always do – changed the subject.

There is this part of me that wants to be able to explain it sensibly but I can’t.

When Chase was first diagnosed and we understood what we were facing I did something that some would find morbid – stupid even. I planned Chase’s funeral. I chose the music, the where and the who. I planned who would carry Chase and where we would lay him to rest. Done, sorted and back in the recesses of my mind so I never had to think about it again allowing us to get on with living a full life.

So when Chase asks that question – "when am I going to die Mum?",  it hits me that in all likelihood I will have to take that suitcase off the mind shelf and open it one day.

and I damn well don’t want to.

I want Chase’s life to extend beyond mine, for him to travel, meet someone special, to have children maybe (IVF is a must for Chase). To get laughter lines like the ones he’s given me, to get grey hair like he’s given his dad and to be able to reflect on a life long lived.

Instead we are focusing on a trip to New York so he and I as a mum will have memories that will carry us through a shortened life time, when the times are tough and we both need to hang onto a shared memory. When times are good and we can laugh with each other.

But most of all we want him to experience life right now – not wait until he is older – because living with CF means that ‘till death do us part may be sooner than we’d like.  

:) Donna

PS: Aerosmith "I don't want to Miss a thing, and Celine Dion 'Fly' are 2 songs filed away for Chase.