Welcome to the Club

Welcome to the club....... it's lovely to have you here........we hope you enjoy the ride......all things I do not want to be saying to new parents who have just got a diagnosis for their child but feel I should say to make them feel welcome. It's not a subscription they've just signed up to, one they've handpicked out of a catalogue. One they've thought might fit their lifestyle.

The truth is it's not a club anyone would want to be in, it's not a club anyone would pick to be in and it's not a club that anyone should have to be welcomed into. No one should have to see their child suffer and have to deal with multiple hourly seizures, feeding issues, spasms, muscle tightness, mobility problems etc. It's not something you dream of for your child when you are carrying them.

I often wonder what pregnant ladies are thinking when they see us walking down the street. Do they panic that their child might be disabled? Does the thought even cross their mind? Because I know for me it didn't all those years ago. I kinda felt something wasn't right but I could never have imagined this world for my baby.

What do you say to a new parent when you know they are going to have to fight for every part of their child's life? Do you tell them it's going to be hard or do you tell them it's easy? Because it is easy to love your child, but it really isn't easy to see your child deal with all the things they have to deal with.

What would I have wanted as a new parent? Would I have wanted that someone to welcome me with open arms ready to guide me through the path? Of course, I would. That's why although It's not something I want to be saying I am glad that parent has found us and they aren't alone. Even though they didn't sign up for this club, they are here now and it's important for them to not feel alone. It's scary enough being told your child will need support for the rest of their life and will totally rely on you for all their needs, without being left on your own without anyone to go through it with.

I always like to give parents that support to know they don't have to be alone, that I'm here to support them, but also tell them how wonderful my child is. I didn't sign up for this club but I actually can't imagine being anywhere else so I may as well make the most of the club I am in right?