Halloween weekend sees us going away to meet some new (ish) friends. Most of you will know when Bubs was born he was diagnosed with congenital Hypothyroidism. It was later confirmed he had no thyroid at all by a scan at Addenbrooks.
I had never heard of this before, didn’t have a clue what the thyroid was for or what it did and had no idea about anything to do with this condition. Top of my list was to go onto Google and find out information, Google has stacks of information about everything, right? Hummm no not in this case, there really wasn’t a lot of information at all. There was even less to read on forums from ‘real people’ So what you want is to speak to ‘real people’ who are also experiencing this and going through the same thing. There were many websites that I could read telling me about the condition however I got no comfort from this. I wanted to know my Little baby was going to be OK. I wanted to know he was going to grow up and be normal and lead a normal life. I’m not asking if he is going to be amazingly intelligent and go to uni and be a highly paid professional. All I wanted was to read he’s going to be OK living with this condition.
I decided to look on Facebook for any groups and its then when I came across a group for parents of children with Congenital Hypothyroidism. I joined but soon realised a lot of the people in the group were from America. We chatted a lot and there were a lot of parents who had children aged 8, 9, 10 + and they all told me about their experiences. Most very positive, in fact all were extremely positive. I used to go on this group everyday and one day I met a woman called Melissa. I was so happy, she lived in the UK, she had a baby born on the same day as Bubs and she had a baby with the same condition as Bubs. We only lived 3 hours apart and I knew from then there was a massive possibility we could meet up.
We chatted for a long time on Facebook and ended up swapping numbers after a few months. Now I don’t mean this to sound horrible, however I am sure Melissa will totally agree. I wish we had never met each other as that would mean our babies didn’t have CH (congenital hypothyroidism) and everyone wants their babies to be 100% healthy and born OK. We have however met through this and I am extremely grateful. She’s always there for a chat, we chat a few times a week and Halloween we are all meeting up. It is so nice to speak to some who knows what you are going through, we talk about when our babies have blood tests and what strength medication they are on and if their dose has stayed the same after each blood test, as well as normal every day chit chat. It is so nice to know that you can turn to someone who understands. It’s very hard for someone to understand if they are not going through this.
I now however a year on feel like we are not really “going through anything’ its a normal way of life for us now. Bubs has his medication every morning and that’s it forgotten about until the next day. We have been so lucky and managed to land ourselves a great weekend away with Travelodge in return for a review of our weekend. We are travelling down to Bournemouth on Friday 30th and coming home on the 31st. We are all looking forward to meeting up. I shall write a post after meeting up to let you all know how it goes.