This week has been Epilepsy Awareness Week and I am going to share a part of Callum’s journey which has a constant presence in his life. However we do not allow our unwelcome visitor Epilepsy to take over our lives although everything seems to cease upon Epilepsy’s visit, whilst we support our warrior Callum.
There are times when it takes every part of my being to hold on to my faith as I find myself asking how can it be right after everything my son Callum has been through? These times I am referring to are when he has his epilepsy episodes. Watching my son have a epilepsy seizure is so very painful, you watch your child with feelings of total helplessness as they suffer during a seizure. Callum is my gorgeous angel and when he has his seizures he is a little Warrior trying to get through his battle of clusters of seizures bombarding him.
I have been told (as Callum is non verbal is not able to tell me) that people who have been able to describe how it feels just before a seizure have described their different experiences and the types of warnings and auras they feel. These range from a raising feeling in the stomach, getting a unusual smell and taste, a sudden intense feeling of fear or joy and clammy hands and feet.
When Callum was little he would have absences, this is where a person becomes unconscious for a short time, they can look as those they are staring and look blank.
As Callum has grown his seizures have changed too, When he is due to have epilepsy seizures his signs are that his hands and feet are usually clammy, he will be up all night being vocal and just not wanting to sleep, does not want to eat as much as he usually does (Callum does love his food!). Just before he is about to have a seizure he becomes very unsettled starts bouncing up and down where he is seated and may get up wander around, come over to me and hug me holding on and letting go appearing a little confused. Then Epiliepsy, his unwelcome visitor arrives, you know this as he shrieks out and collapses becomes rigid and convulses (jerking and shaking movements).
He looks terrified when it happens and to be honest each time inside myself, I hide the terror I am feeling for him. As I see my lovely boy suffering I have to each time gather all of my strength for the both of us, remain calm and reassure him through these Epileptic episodes. Each seizure differs in the length of time he has a convulsion and as if one seizure is not enough he can have several in a day. Callum has even had to battle through over 20 seizures in 24 hours once!
He is exhausted when he has clusters of seizures over several days ,during which I stay with him constantly through day and night, ensuring he is safe. I make sure when he has seizures he does not hurt himself as he collapses. I have got used to not sleeping over many nights as I have to remain vigilant.
Callum has severe learning disabilities, vision impairment, dyspraxia and has no verbal communication, hence to keep my precious little star calm I speak to him and stroke his face and I run my fingers through his hair as I am sure his head aches after the seizures, Followed with lots of kisses and staying focused as I cannot get upset in front of him as Callum is so courageous.
I can honestly share with you all that I have only seen Callum cry twice both times huge pearl size tears just a couple falling on his beautiful cheeks. He is so very brave and I have to stand just as strong and brave beside him.
The recovery can take days as first he can be very lethargic not eating and drinking. Once he did not eat or drink for 72 hours despite all efforts. I did not want him to be tube fed as he had been through enough. We brought Complan a nutrient rich meal replacement and mixed it with milk and fed Callum the Complan with a mouth syringe. It took over a hour to feed Callum but it worked. I still do this to this day when he is in and out of consciousness after seizures and is recovering.
I arranged an appointment to see a private consultant over 6 years ago regarding Callum’s seizures and was shocked to learn some children he has seen have 50 plus seizures in a day!
This certainly put our circumstances into perspective as I thought about all those children and their parents hardly having time to breathe. My heart went out to them. I may not have met them but I felt I knew them. As families, we adjust and adapt our lives around our disabled children. Our lives are different, we have our own family way of life trying to maintain our sense of normality which includes having sleepless nights, cancelling plans, appointments, visits when our child has had a seizure as well as juggling work and responsibilities. We hope and wait for the seizures to cease our shared unwelcome visitor the notorious Epilepsy to stop being present in our children’s lives.
That’s why I felt I knew the other families as they are part of my son’s, my family’s community our disability community. We have our own language, our own understanding, our own ‘normal’.
Our ‘normal’. I have many times gone to work with less then 4 hours sleep per night over 3 days (during when he is due to have epilepsy and after)
My sleeping routine is ‘normal’, as I check on Callum each night literally like clockwork. Checking Callum is okay a hour after he is put into bed then at 11pm, 1am and 4am to check he is okay, his bed sheets are still on him and he does not need changing (all Callum’s personal care needs need supporting).
Each time I smile as I see him sleeping peacefully, safe, embraced with all the love he knows he is surrounded with. Everything is good when my son Callum does not have to be the Epilepsy Warrior and he is well.
A picture of our last day on holiday, Callum was already starting to not feel well and on the journey home he had 2 seizures on the plane and thankfully he was safe and the staff were fantastic. This is our normal life.
– Parmi Dheensa
Please do find out more about epilepsy as there is a general lack of awareness about epilepsy. It varies and effects people in different ways. Find out what you can do to help and get talking to others help raise awareness! Here are some links:
