Recently, in several CHD -related groups, there has been debate regarding the right steps to take with CHD.
I am heartbroken for all involved, and the situations that bring so many debates.
It inspired me to write this.
I hope that by sharing it, it reaches the people that it needs too.
Take what you need from it.
CHD is like a train journey, with two towns on either side of the tracks.
You and your child are on that train.
So are the numerous doctors and wonderful health professionals that will be there throughout your child's life.
You're on the left side of the train. Your child is sitting across from you on the right, eagerly looking out the window.
(Left or right is not the same as right or wrong. They are just sides)
The doctors and nurses are up front, in the same carriage.
Everyone in that train carriage is travelling in the same direction, and you are all moving forward together, but you will all have completely different views of what you pass by.
Your view out the window on the left side will be different to the view out of the right side.
You and your child will see and experience things very differently.
When you look over at each other, you will catch glimpses of each other's views through the windows, but they are not the same.
Even just from glimpses, you can tell that the view is different.
The doctors and nurses who are sitting upfront will see things differently too.
They're on both the left and the right side of the carriage.
They'll often (but not always) see things first, before you or your child, but they will see them through different eyes.
They will try and give you a heads up for what is about to appear outside the window, but they can only do their best with the knowledge they have and the glimpses they are able to share.
Sometimes you will pass other families in their trains on their own journey. You can wave out of the window, and share experiences sometimes if the trains stop, but your views will still be different and your experiences are not identical.
It's a train journey that nobody would ever have chosen their child to be on, but you do your best with what you are given.
In the kindest way I can put it, do not judge someone for deciding when to get off that train. You do not have that right.