Its not always smiles and High Fives :)

I read a poem the other day about the capacity of a mother’s love. I think it was one of those emails that go around and around again, but for some reason this time it seemed more poignant.

What is it about mothers that enable them to fight momentous fights just for the sake of their kids?

And what type of society does it suggest we live in when as a parent we have to continuously fight for understanding.

And can I admit that I am exhausted from all the battles?

Today saw an explosion from the depths of my despair. An explosion directed towards a school and education system that refuses to acknowledge their part in my child’s welfare.

·         He doesn’t come from a broken home

·         He doesn’t come from a back ground of poverty

·         He is well loved and well cared for

·         He isn’t spoilt and surely doesn’t get everything he wants

He isn’t recognised as being ‘At Risk’ because of the above and yet he is more vulnerable and more at risk than at any other time in his life.

We had to call the police today on our 9year old son and it broke my heart more than you could ever imagine. Even they acknowledged that if we cannot do something now, our son will face more serious consequences later on, at a time when as parents we won’t have the same ability to advocate for him.  

So we start a new battle. One for support, one for finding the necessary resources to help him find tools that arwill enable him to better manage the issues ahead of him.

After all isn’t that we mums do – we continue the fight regardless of how tired, frustrated, or alone we feel.

And I wouldn’t have it any other way.

Being a mum IS the most important job in the world.

‘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.