Wow! On the 23rd December it was a whole year since I first posted an entry. Never in my wildest dreams did I believe it would become as big as it has. My blog has had 26,205 unique views in the last year, as well as the returning readers. I remember talking to Alex when the idea of a blog first came to me and saying to her oh even if it only reaches friends of friends, or even if it only helps one person it will be worth it. But again WOW look at where we have gotten with this. I never believed anyone would be interested. This time last year I was just over 12 weeks pregnant with NO idea of what the next year would hold. As you all know it has been one hell of a ride. 2015 will go down as one of my favourite years of all time for giving me Noah, but it will also be remembered as one of the most harrowing for varying reasons.
I sit here in complete disbelief at what this blog has opened up for me, the research I have taken part in, meetings I have attended, the Young Epilepsy award ceremony, award nominations and as I write this I am beyond thrilled to say I have won an award given to me by Epilepsy Action. I cannot wait for the awards ceremony in February. It amazes me that people want my opinions never mind that they actually are taking them seriously, that it counted for something. It’s a world that a year ago I didn’t know existed never mind had any idea that it would be my life.
I have gotten to know some amazing people over this last year, I have heard stories that have broken my heart but also stories of triumph, of the compassion of humanity. I have heard from people all over the world, and I sit in awe every time it reaches a new country. I have also been asked to write for publications abroad and I am so proud of that. I make sure I reply to every email and message at length and I hope I offer just a bit of comfort to those who contact me. I will keep going with the blog, for how long? I don’t know, I still face so much that I would want to share and gain advice from others, telling Noah about my epilepsy as he gets older being one example.
I am also so very passionate about pushing for research. The research taking place is so vitally important for women with epilepsy, and that includes me, outcomes of research will play a huge part in whether Chris and I decide to have more children. Even then it will be something that we will really have to talk about, it’s a lot for us both to go through again and it would be so unfair to put Noah through it. But then who knows every pregnancy is different and maybe I’ll have an easy ride next time. :-)
When I think back to that dark day in March laying in resus I remember wondering how I was ever going to make it to the end of the pregnancy never mind be a Mum and raise a child. Those dark days are thankfully gone, and whilst I’m not saying it is easy, we do ok. There have been days where I think both Chris and I have been shaken to the core and fearful, moments that will haunt us for the rest of our lives. However we have Noah and at the end of it that is all that really matters.
At a meeting a little while ago I was asked where I thought medical professionals were failing women with Epilepsy, there are lots of areas but as I am writing two instantly spring to mind.
1) Not being honest about the effect the medications can have or just not being aware of that information.
2) One that I think needs looking at closely: Pre conception counselling. All women with epilepsy are supposed to receive it prior to falling pregnant and NHS trusts are failing. I was asked how it would have made a difference to me. I am not naive enough to think it could have stopped everything that happened but had someone sat down and said Ok so you have been seizure free for a while but this could happen and this is how bad it can get I may have been a bit more mentally prepared. Maybe just maybe I wouldn’t have felt so fragile and weak. It cannot be changed for us but if this changes and it helps just one woman then I would be happy.
As for Noah, I have no words, it brings a lump to my throat as I sit here just thinking of him. Every single day I look at him and know I have perfection, every single day I remember how so so lucky we were that he arrived safely. Our little boy is a tough cookie and meant for this world. I am consumed with a love that I never knew was possible. He makes me proud every single day, he is so perfect and so handsome even if I do say so myself. One day I will sit him down and tell him all about how Mummy started writing and it went further than she could ever imagined. That I started writing because from the moment I knew I was pregnant with him I wanted the very best for him. I only hope he is as proud of me as I am of him, and he is only 6 months old! The truth is he will probably be embarrassed as hell, isn’t that what parents are supposed to do – embarrass their children. My only wish for him is that he grows up happy, healthy and knows how very very much he is loved, not by just me and Chris but our family and friends.
What have I taken from this year? I have learned over and over again that my friends and family are priceless, that time and time again the same people have stepped up and made this year that little bit easier. This is my slight chance to acknowledge them. That there are those who dragged me through this year and stopped me from drowning when it got too much. My sister, my right arm, confidant, biggest champion and defender, I don’t even have the words for how much I love you. Holly – Your unconditional love is one thing that never changes. I don’t have to call because you seem to have an instant knack of knowing when I need you, of just being there. Finally credit where credit is due to my friend Alex. I wouldn’t have made it through this year without you and we love you so much. Your patience, understanding, love, compassion and attempt to give me some sort of normality, being there whether I needed you or not, quiet reassurance and babysitting me has been invaluable. I don’t know what I did to deserve you but I am so glad I did it.
Then I look at my husband and love him more than ever because whilst I am learning as I go how to be a Mum, Chris just was a Dad from the day Noah arrived, Chris was born to be a Dad. He has been a rock and constant during this year, and has supported me time and time again in writing this blog and even been roped into it. I have written lots about how much I love him and how proud I am to be his wife so I will not embarrass him anymore. :-) Anyone that reads this knows.
I also want to thank Young Epilepsy and Epilepsy Action for their ongoing support. They have both been fantastic over this last year.
My first blog was entitled “Does epilepsy matter now that I have two blue lines? Now the question I have asked myself is “Does epilepsy matter now that I have Noah?” The honest answer is that it impacts my life and probably the way I parent Noah, but when I am putting him to bed, having a cuddle and he wraps his little hand around my finger – no it does not, not one bit. I am just his Mummy.
As we celebrate Noahs first Christmas I for one will be counting my blessings and spending time with those I love most. Merry Christmas all and thank you for your support this year. I hope you will continue to join our journey in the New Year. xxx
EDIT: Since writing this post I have found out I have been nominated for a UK Blog Award 2016!!! I am very excited about this – it goes to public vote from Monday 4th January 2016 – Monday 25th January 2016 @ 21:00…. So pretty please take two minutes to vote for me (I will share the link when voting opens!)
My names Faye, mostly known for being a tea addict and keen runner. I'm 31, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.