Most days I cope extremely well with VCFS, but there are some days I don’t cope at all. Our family lives with VCFS everyday and it’s something that we never asked for. I do not feel sorry for myself nor do I ask for pity. Pity only enables one to stay trapped in a quagmire of unbelief and only cripples all from moving forward.
When I was first informed of our Son’s diagnoses of VCFS I was devastated. Grief came as I had to come to terms that my Son had a syndrome and what did that mean?? I cried every day for three weeks and I lamented for my little boy who we love very much. After the three weeks I stopped crying and decided that I needed to start being an advocate for my Son and so I did.
My first step was to reach out and find other parents who were facing the same thing as us. that’s where I made contact with VCFS 22q11 Foundation and spoke with Melinda the then president of the foundation. Stepping out and meeting other’s in the same situation is very empowering because you find that you are not alone.
Most of my coping comes from knowing Jesus and that I can put my faith in him. This is especially beneficial when things become really tough and I haven’t got a clue what to do next. I believe a lot of the strategies that have come through was a result of prayer with my wonderful supportive church community.
The other things that help me cope is going to all my coffee support groups. unfortunately most of my VCFS community don’t live close by (but there is facebook) so I just join local groups. Even though VCFS isn’t their issue we still battle the same issues, such as grief and always feeling like your on public display just to name a few things.
I Also found taking my journal to a local cafe weekly such a regenerating and refreshing experience. I get to diffuse and off load all my stuff onto the pages of my journal and it feels good!! I also get to meet many people while I’m there and that too gives me happy feelings.
My attitude towards VCFS is another way in which I cope day-to-day. I find that embracing it helps as I can’t do a thing to change it. I cannot make it better so I see it as a door to a whole different world. This world is not bad and has given me much joy as I meet other children who have various disabilities and they are all beautiful.
VCFS is not an easy ride but it is maintainable.