Living the storm…..

There has been a lot of hurricanes and storms recently. Irma and Harvey ravaged South and North America, Ophelia had a crack at Ireland and Brian tried to do his worst but it was relatively calm here in Scotland. The weather in house Pender has been relatively calm here too. Living with a child with life threatening Epilepsy is like waiting for a hurricane to strike. However unlike our eponymously named weather bombs the epilepsy weather bomb doesn’t come with a three day forcast. There is no rushing to the shops to stock up on back-up supplies or boarding the windows to minimise the damage. Epilepsy strikes with no warning, no strong gale building overnight into a hurricane force. It goes from Zero to a category 5 hurricane in less time it takes you to remember where the emergency rescue medication is. We are lucky we get a small warning in that Hannah always vomits immediately prior to a seizure giving you about 60 seconds to grab the meds and place her in the recovery position waiting for it to start. Sats monitor and stopwatch at the ready incase it goes over the 5 minutes and slips in to a status epilepticus seizure. Between 4 and 5 minutes is the eye of the storm. It’s either going to change course and spare everyone in its path or it’s going to strengthen and turn an ordinary day into one being blue lighted to resus where we don’t even have to give her medical history anymore and we know all the emergency medical staff by first names.

Sometimes we are lucky and the only casualties are the kids who have been scattered to trusted family for the night, and our sleep for a night until she gets home after being monitored (Hannah’s seizures usually come in twos). Other times the storm sticks around while we get repeatedly blown over like 3 years ago when she spent 5 days on life support and a ventilator fighting to stay with us.

Although it strikes without warning we are always prepared. Always waiting for the storm clouds to roll in. Rescue meds placed in various easy to reach places, care plan on her person should it happen when we are not there and a go bag in the cupboard by the front door with all the essentials for either parent to spend the night at the hospital as comfortable as you can be. Spare socks and underwear, toothbrush and deodorant along with snacks, water and phone chargers, and Hannah’s comforts like a blankie and her tablet and her medical records. The last thing you want when the ambulance is coming is frantically trying to pack a bag of essentials.

That being said while we are prepared for the inevitable it doesn’t stop us living. If we sat around everyday watching her every move then we would be hermits.

We can be prepared but still enjoy life. We can be mindful that something may be around the corner or it may just be a normal day. We can range from almost 30 seizures in one day to our longest stretch seizure free which was 11.5 months. I choose to dance. I choose to let Hannah dance but it never hurts to have a contingency just incase the clouds come.

Author: Rebecca Pender

Rebecca Pender is based in Glasgow, Scotland and one of her many hats she wears is mum to 3 young girls under 6. Her eldest daughter Hannah has an extremely rare genetic condition called Inv Dup Del 8p. She also lives with epilepsy, brain abnormalities and a learning disability. As a family they refuse to let any diagnosis or struggle define what they can or cannot achieve, they may just have to improvise the plans. A graduate of the internationally recognised Partners in Policymaking programme, a leadership programme for parents of disabled children and disabled self advocates, Rebecca is a huge champion of disability rights and is determined to break down barriers for disabled people in areas like inclusion, collaborative care with health providers and social injustice. You can follow her on Facebook and also on Twitter. View all posts by Rebecca Pender