There is a group that has become a very important part of my life. A group that has given me friendship, support and advice as I’ve been dealing with my daughter’s disability. The funny thing is I nearly missed out on all that this group had to offer because of my own fear.
After my daughter was diagnosed with CP in 2004, we were referred to The Centre for Cerebral Palsy. It was a very confronting place that I tried to avoid as much as possible. I was there for an orthotics appointment when one of the other mums grabbed me and told me there was a meeting taking place called Parent Focus. “Come and meet the other mums” she insisted.
Now I have to pause in the telling of this story to explain something here. You see, even though outwardly I appeared to be accepting and coping with my daughter’s diagnosis, there was a hidden side that I didn’t share with anyone. I knew my daughter had CP, I knew she had suffered a massive brain injury but (and it’s a very big BUT) secretly I still held this tiny little hope that they had got it wrong. I know, even as I write it it doesn’t sound rational but every time I went for a review or a clinic appointment I had this little flicker, wether hope or denial, that they were going to say “we made a mistake, there’s nothing wrong and your daughter is going to be just fine”.
Of course they never did and outwardly I put on a really good show, trying every bit of therapy I could get my hands on and all the while hoping it wasn’t going to be necessary. You see she was just a baby. There weren’t really any outward signs that there was anything wrong. She was a twin and I would push my pram along with my two beautiful babies and pretend that everything was normal. And now here was this Mum trying to get me to join in a group for parents who had kids with CP!
I made every excuse I could come up with that day but Sue wasn’t taking no for an answer. I resisted (politely) all the way down that hallway and Sue valiantly brushed my excuses aside. Short of putting my hands and feet either side of that doorway I did everything I could to avoid stepping through that door.
You see the truth is I was so damn scared! I knew that the minute I stepped through that door this thing, that I’d been trying to hold at bay, was going to become real and it terrified me. I was going to be a Mum who had a child with CP and meet other Mums who had children with CP. What if someone told me a horror story about what my life was about to become – how would I cope?
Of course that didn’t happen. I stepped through that door and it did become real and it was ok. I was ok. I met some amazing, strong and resourceful women. We laughed, exchanged stories and vented our frustrations. I got so much help and support and they showed me that life was going to go on and it was going to be just fine. Yes there would be hard times and challenges but we were still going to be alright. We were still going to have a life that was enjoyable and meaningful.
Years down the track I don’t get to go to as many meetings as I would like but when I do it’s great to catch up. Now I’m one of the ‘old timers’ and hopefully I can help make someone else’s journey more bearable. The faces change but I have been so lucky to meet wonderful women and a burden shared is a burden halved. There’s nothing like being able to talk to someone who knows your world.
If you are new to this world I urge you to link in with a parent group as fast as you can. It will be the best thing for both you and your child.