If any anyone knows me then they would know that I am a person who has been effected by VCFS. I had never heard of this genetic disorder until my son was diagnosed at 18 months old; he will be seven at the end of the week. The news came as a big shock soon followed by grief and tears.
The way I have dealt with it has been to embrace the unexpected world that we were thrown into and find out as much as we could about this VCFS aka q22. dil.11.2. Like any normal parenting world, it’s been a journey of many ups and downs with a bit more obstacles in the way.
For the past couple of years at this time of year I have enthusiastically have attempted to create awareness of VCFS in my local community. This year has been different.
Has VCFS worn me out?
VCFS is only a small part of the story that has been unfolding in my life for the past seven years. It’s been a story of breakdowns, bankruptcy, car accidents, child needing surgery to repair soft cleft palate, child with a diagnoses, Mum getting sick, mum dying, my cousin died and my father in Law died. There has been so much and more that eventually it all caught up on me and for the first time in my life I’m on medication for depression.
I’ve been told by many that I need to be kind to myself. How do you do that??
Recently I took a three-month break from my studies and as a result I kind of got there. I read novels, took long walks, painted at the community garden and started to recognise more of Gods love for me.
When I thought about VCFS awareness week it made me feel stressed so for the first time ever I said “no, I can’t this year” It felt like such a relief to be kind to myself. I have had to just let certain things go and just do the things that give me pleasure.
For VCFS awareness week this year I will just write this little post and hope that those who read it will check out the VCFS 22q11 Foundation. On the website you will notice a link to Area Representatives. I am from the Illawarra and you are welcome to make contact with me. Don’t do this journey alone because at times it can really do your head in!!!!