I am very lucky to have three amazing children and a wonderful husband. My husband has epilepsy and all three of our children have epilepsy too. Keen epilepsy awareness fundraiser, I have raised over £18,000 for charities to date and have won awards for my efforts.
Yes, epilepsy is scary and it’s frightening to watch the children fight battles everyday but it has also showed me strength I never knew existed, not only from them but also from myself. We decided that our journey would not bring us down and in fact make us stronger. We share our story on Facebook and have had the most amazing chances to share our story and awareness through the media. It is very important to me and I want all epilepsy warriors to know just how amazing they are.
It really is the most amazing feeling in the world becoming a parent, waiting for the first word, the first step, the first time your baby eats food. However, you do not prepare for their first seizure – the first time you have to ring an ambulance for your child who was one minute smiling and playing, and next unconscious, pale, with tinged blue lips and all limbs jerking. This is one of those moments where every second feels like a year, and every minute feels like a lifetime. That day back in 2012, I thought we had lost our little boy; it was the most horrific thing I have ever witnessed. What I did not know then was this was the beginning.
Jenson was diagnosed with epilepsy at seven months old. He started on medication, sent for EEGs and MRI scans. Not only does he have tonic clonic seizures, he also has absence seizures, complex partial seizures and atonic seizures. He is also being tested for ADHD. The seizures increased with time and new seizures became apparent. Every time he is unwell, he is more prone to tonic clonic seizures. You never get used to seeing your child having a seizure even after seven years. You cope because you have to for your warrior.
I always remember being eight months pregnant, lying on the bedroom floor next to Jenson’s cot holding his hand. My poor baby being in-and-out hospital poorly. I wanted to make sure he was okay while at the same time, waiting for the imminent arrival of baby number two.
The day came where William was born. He was so tiny and perfect. Little did I know that in seven weeks’ time, we would end up in hospital with another little warrior.
It was a sunny morning and my mum came round. William was in his bouncy chair. “Look mum, that can’t be right,” I said, as my baby was looking vacant and kept making vibrating head movements. Over the next ten days, William had 113 seizures and went to another hospital for tests where he was diagnosed with simple partial seizures.
I just could not believe it.
I was not going to let this hold my little boys back. Yes, I had twice the worry but also twice the strength, twice the love and twice the memories to make. Over the next few years, William had tonic clonic seizures, absence seizures and, in addition, has PICA, a condition where he craves non-food substances. William also has many sensory needs; requires hearing aids and has +9 vision in both eyes. They are the brave ones.
Jump ahead now to 2015, the year our princess was born. I always wanted three children and I knew nothing would stop me from completing our family. Darcie started having episodes where she would shake and seem vacant. On this particular day she was not well and I noticed her arms were shaking. I could feel the movement when holding her. Her legs and arms started to go purple and she continued to shake. This was slightly different to the boys but I knew again that something was not right. Surely, it can’t be starting again?
I rang an ambulance and Darcie finally came out of her seizure 22 minutes later. My heart was pounding as we head straight into Resus. Tears were rolling down my cheeks. Darcie had another seizure the next day and after spending time recording seizures and countless tests, she was diagnosed with epilepsy too. She also has absences seizures and partial seizures. I now have three little epilepsy warriors.
“I don’t know how you do it,” is what I often hear. I do everything I do because I have to, I want to and I always will. Yes, I look after them, sort out medications and go to lots of appointments. I also have many sleepless nights where I constantly worry, but they are the true warriors.
Epilepsy will never hold us back. We have a lifetime of memories to make, happiness to have and love to share. The strength our warriors have now is something I never knew existed. I decided this would be the start of something positive. I have had the pleasure of sharing our story worldwide and having positive messages from people in the USA, thanking me for helping them. The best part is hearing the words, “I now know what to do if I see someone having a seizure” from total strangers. That is why I will continue to spread awareness. Maybe one day that could save someone’s life. Remember, epilepsy doesn’t define who you are – it is a part of you and you should be proud of your strength, courage and determination.
Have you experienced something similar? Tell us your story below.