Go and be incredible.

I have found being a parent the most amazing experience of my life thus far, although my children are still very young I am enjoying the journey. I am so amazed when I meet parents whose children are much older than mine, and I begin to imagine the future, how will my children look? What kind of people will they be? What profession will they choose? Will we have a good relationship? I wonder away but pull myself back to reality to enjoy the here and now.

When I was dealing with my son’s vein of Galen, this was not my thought process at all. When I was told all the things that might occur with him being born with this condition and the dangerous situations that might follow, I had decided in my mind that I would not have any more children. Already as a parent when you have children, it opens up an entire world of worry, whether you’re with them or whether they’re in school etc. You worry so much, about what they think and feel, about their safety, so imagine having to worry about whether they will live or die. It is such an awful thought to have on your mind and troubling to have to think about your child in this way and I truly wished it wasn’t happening. I had decided that I never wanted to feel this kind of pain ever again, so if that meant no more children, then that’s what I wanted to do. To make matters worse I didn’t even discuss this with my husband. I was so conflicted because on one hand having children is one of the best tings to ever happen, yet on the other hand it can be one of the worst things if they are hurt, sick or worse if they pass away.

No matter how strong you are and how well you deal with different situations that may arise in your life, any sort of threat to your child is enough to cripple you, so it just goes to show how precious these little one’s are to us.

I didn’t ever want to be stuck in this negative mindset that I was currently in, so I decided to start focusing on all the positive things that came out of this vein of Galen journey. I am now well versed in the medical condition known as Vein of Galen, so this is an important thing because I can talk about it to others and bring their attention to such illnesses. This will in turn help to raise awareness and do more to help children.

It showed me how amazing the people around me were, their support and love was a necessity for me at that time, and the times where I could have been curled up in a ball crying, they were keeping me company, and keeping me sane.

I was introduced to a network of amazing nurses, and doctors who work so hard and are always pleasant and helpful and doing an amazing work. This has pushed me to support more charities such as GOSH and the Sick Children’s Trust and many more.  I am also more motivated in encouraging others to go and support these charities and others that are similar. Any child in need deserves fantastic care and to be cared for in the most capable hands.

It also helps to opening up lines of communication between people, for example, there have been instances at GOSH where you see children with severe visible deformities, and not everyone reacts well when they see them. Some people are startled and can't help but show it. I have seen the hurt that this causes to children and their parents. Just speaking to the people who had the reactions, and saying to them, why did you react like that? Do you feel you could have handled it a different way? Because your reaction has the unknowing ability to completely destroy someone else’s day. People need to be more courteous and considerate to all, especially children. I know that some people don’t have children, and others are not around children, no matter the situation, treat people how you would like to be treated, and hopefully that is in a nice way.

Let us learn to support one another in our daily lives so that no one is left in the dark.

 On this dark and gloomy day why not make the decision to be the sunlight in someone’s life. Go and be incredible.

Guardians of the precious- Here to support you, so you may support your precious.