There’s not a day that goes by without me wishing that I wasn’t doing this. Wishing that I wasn’t on Facebook, wishing that I didn’t spend my spare minutes reading medical articles, and most of all wishing my baby didn’t have cystic fibrosis. But it is what it is and we have to deal with it in the best way we can as a family.
It took me about five or six months post-diagnosis to be able to talk about it and tell people without bursting into tears. Even now I’m trying my best not to cry writing this. I don’t like to reflect, I like to just keep going, keep her well and be positive for her future, our future together.
After Harriet was born my family started to do all kinds; fundraising like crazy for CF. I felt so guilty for so long that there I was, her mam, doing nothing to help. My husband, sister in law and friend all signed up to do The Great North Run. I enjoy fitness and exercise but distance running is just not my thing. Short attention span according to Chris haha! So this, the blog, is my Great North Run. Each week I share a little bit of our privacy in the hope that people will come back and read the most important posts. The ones where people can learn about cystic fibrosis, raise awareness and most importantly raise money to fund research into better treatments or a cure some day. I know there is only so many times you can ask people to give you money or sponsor you to do all sorts of crazy things so we try to mix it up and have lots of other ways to get involved!
Another hugely important reason I started this was to help others. When Harriet was first diagnosed and we were in hospital after her birth dealing with Meconium Ileus, I spent forever on Google looking for something like this. I thought our lives were over; I did not think family life would be the same again. I was wrong, so wrong, and I want to show that to parents of the newly diagnosed.
To get messages from parents currently facing the same situations we have been in, saying that my blog has given them hope and made them feel a little more positive about things means job done for me. Even if I’ve given comfort to one or two families in their darkest days post diagnosis I’m happy with that. So, that said, I will endeavour to keep going, to show that life goes on despite this cruel hand we have been dealt. We have an amazing, happy family life and will continue to do so.