You also learn who your support network is. Close friends disappeared from our lives; maybe they didn’t know what to say or how to be around us. Other people stepped up to be here for us, for which I will never forget. You need people who will stand next to you when the worst thing in the world is happening, check in on you, bring cake, keep you going.
When I found some strength, I knew it was time to put it into raising awareness for epilepsy. Bea has a JustGiving page and a memorial fund with Epilepsy Research UK. Together, with family and friends, we have so far raised over £5,000 and we continue to raise money and awareness.
Now, 15 months later, I get through each day – sometimes with only a little cry, sometimes I feel like I have been hit by a truck, and it can come out of nowhere. People say that it will be a ‘new normal’ – I haven’t yet found this and am not sure if I ever will. Being able to bring up Gracie as per Bea’s wishes in her will has given me the strength to continue, and it is both a blessing and an honour to play such a huge part of this little girl’s life.
To someone newly diagnosed, I would suggest they and their family ask as many questions as possible to their consultant, doctor, and anyone else giving them care. Speak to other people with the same condition – this will make you realise you are not alone and that there are support networks out there. Talk to your family and close friends because they can help you in lots of different ways. I guarantee most people will not be aware that this condition can be life-threatening, but talking to them will help them to understand.
Also, do not let epilepsy define you, or put you off from doing anything and living your life – yes, you must look after yourself, take your medication, beware of your triggers, but live life to the full!
I do not think people with epilepsy and their families should fear the condition, but consultants should warn about SUDEP (Sudden Unexpected Death in Epilepsy) – this was never discussed with us. From what I have read since this seems to be a failure for many families going through what we are. People should be given advice on bed alarms – what to buy, where from, and offered funding to help. A bed alarm was only mentioned to Bea by her GP shortly before her last seizure, we did not manage to purchase one in time, nor did we have the information to do so.
More research should be carried out in young women with epilepsy who have recently given birth, as well as people taking anti-depressants. How much of this contributed to losing my daughter? I do wonder if her death was a disaster that could have been prevented.
– Alexandra, November 2020