I talk a lot about my son’s (Rohan) epilepsy on FB. And have many times recounted times where I or my daughter Serena have dealt with Rohan’s sometimes very violent epilepsy and its consequences calmly. Unknowingly I had inspired many other mums of special needs kids that faced with a new episode of activity and went straight into feeling calm and dealt with it effectively. They later contacted me to thank me for modelling or talking about Rohan’s experiences online.
I want to take this opportunity to share my journey of getting to that comfortable place with Rohan’s epilepsy, so that it might support others.
A bit of historical stuff…
Rohan has a condition called Isodicentric 15 (IDIC15), chromosome abnormality, many children with this experience epilepsy, low muscle tone, learning difficulties and autism among other challenges.
Rohan started having seizures at the age of 5½ months old, they were infantile spasms: little jerks where if he was sat in a chair his head would nod forward, and his legs and arms would lift up. And then Rohan would smile. I didn’t know then that this was epilepsy. I felt terrible, I judged myself as a bad mother for allowing the seizures to go on so long, I knew something wasn’t right but I was too afraid to look, until it became unmissable, his development regressed and he began having 20-30 of these episodes at a time, several times per day. It was diagnosed at 9½months old, we tried a vast variety of drugs, none of which worked so as a last attempt at the advice of the paediatric neurologist we tried a course of steroids, this had an immediate effect. The seizures stopped at 11months and Rohan started sitting the following day and his halted development recommenced.
At the age of 4 (in 2006) the seizures started once again, we again tried a barage of drugs recommended by well meaning and caring professionals but alas no relief was found. So we decided to abandon the medical route and try a more holistic route, I tried homeopathy, kinesiology, osteopathy, supplements, the list goes on… while they helped in some areas e.g. Rohan’s bowel movements or his energy levels, nothing again gave him relief from the epilepsy.
The epilepsy continued and I continued to scour the earth for solutions, worrying constantly and being fearful to motivate me on my quest of helping my son. Rohan was about 6years old now and we were running a home schooling programme called Son-Rise. I remember so clearly the day where I was sat beside him at the table helping him with his lunch and then suddenly he had a violent head nod smacking his head into the plate before him, instead of coming back up he remained rigid in the same position, holding his breath and contorting his face. His face went from red to a little purple around his lips and he shook. I shouted, I shouted his name over and over again, I shouted for my husband, I panicked like I had never panicked before. I knew he was having a new kind of seizure but had no idea of how to behave? After 3-4mins the seizure began to pass and I helped Rohan lift his head off the table, this is when he began to vomit while crying. Thankfully I caught it in his plate before him. I wiped him up, while hold his limp and exhausted little body, lifted him from the chair and laid him on a bean bag to rest.
I just remember feeling very tearful, worried, powerless and exhausted, I felt such a victim, WHY ME? WHY ROHAN? And many other guilt ridden questions.
I spoke to a friend about the episode, describing my reaction, she said “I don’t think that is very helpful to you or Rohan”. I agreed but had no idea how to change it. She recommended I do an Option Process® Dialogue. That evening I arranged a call to a mentor at the Option Institute, America. The mentor very loving asked me what I wanted to explore, I told her of the seizure and then continued with… “I can’t love it, I can’t embrace it I can’t even like it, I hate it!” She asked me “how do you want to feel about it?” This for me was a transformational question, no one had ever asked me how I wanted to feel about something. I didn’t even think it was possible to think another way. I was used to many people in my life making assumptions and telling me how I ‘should’ feel.
I decided I wanted to feel neutral, not to hate it and I didn’t feel like I could love it at that moment, so feeling neutral like a paramedic, nurse or a doctor attending to a scene. But even this felt like bungee jumping off the tallest bridge in the world. To get to this place I had to identify all those beliefs that were creating this massive discomfort, change them and remove all the judgements I had about changing those beliefs.
What I learned…
Over the course of this conversation, the mentor held a very safe space for me to share all my thoughts, she didn’t judge me, tell me I should think another way or behave any differently she just continued to ask me questions to help me find my beliefs and help me understand the purpose of those beliefs.
So in short here is what I found:-
- I believed caring was worrying, why? While growing up I was surrounded by very well meaning, caring parental models who worried about us. I made up “The one who worries the most loves the most.”
- The other reason I was worried and panicking was that I was an expert at catastrophising. Which most of us are but we never create the space to look at it. I was worried while Rohan was having the seizure that lets say in 30 years he is still having seizures that he would be really unhappy and so I would be really unhappy too. So I was unhappy now to prepare or save myself from unhappiness I might experience in the future???
- I did two things here setting up a fictitious future, why? To motivate myself in the way that I had learnt i.e. using fear and worry to help my son be well now.
- I believed my happiness was dictated by how Rohan was feeling.
What I concluded…
I realised none of these beliefs were serving me, just like rotting food in the fridge they were making me ill, so I decided to throw them out and buy some new ones.
- I decided to define loving differently, when I was panicking and worrying, I was just thinking about myself in the future, I wasn’t loving Rohan I was just fantasising about myself. So I decided I was going to watch Rohan and be totally present with him with every cell in my being. I was going to be there for him, for the first time in my life I understood what being there for someone meant. I wasn’t going to judge what was happening, I was going to look at it as a seizure, it is not good or bad it is just a something happening. The last thing I decided that would be loving would be taking useful action, do something to help him.
- I also realised I cannot know how Rohan is feeling, he can’t tell me. Sure I can guess and being his mum I know him well, but how many times where people told me “how I must be feeling” were they right…not many! So I was not going to make any assumptions about how Rohan was feeling.
- The last part was also one of the most liberating, I am not responsible for my child’s happiness or unhappiness. What I mean by this is despite what is going on inside us or around us, we can individually decide how we feel about it. I wanted to empower Rohan with this belief, to do this I first had to empower myself.
I thanked my mentor for her time and her questions and set off with my intentions.
The very next time Rohan had a seizure he fell to the floor, I went straight over to him, I didn’t feel worried or anxious as the intention I had created was strong. I watched him as his body went very rigid and I noticed he was holding his breath. I suddenly recounted an experience I had when giving birth, every time I had a contraction I held my breath as I was is so much pain, however when my midwife coached me to breath it not only helped me mange the pain but also relax my muscles. So I decided my useful action was to reassure Rohan that I was there for him but also to coach him to breath in and breath out the tightness. As I became more practiced at this I began coaching Rohan to breath in to particular parts of his body.
The results were; I was in a much more comfortable and useful place to Rohan. The other unexpected huge benefit, Rohan appeared to listen and pull himself out of seizures, the seizures became noticeably shorter in intensity and duration. On some occasions he will jump up with a smile on his face and run straight after having a drop seizure! The other added benefit was people around Rohan like his carers and baby sister just copied me and did the same, so instead of having panicked fearful team of people around him he had a peaceful loving supportive group around him.
I know which I would prefer!
The journey continued and still continues….
I did many more dialogues and learnt new perspectives to get more and more comfortable with Rohan’s epilepsy, along my journey of becoming an Option process mentor myself. Rohan continues to bring new challenges my way to help me on my path of self-discovery and empowerment. So that answered my question of Why me? I feel very blessed to have this little guy in my life, I now believe we were meant to be mother and son, he is an inspiration to all those that are lucky enough to be in his life.
If you are struggling with a similar issue or other life events that are making you feel stressed and anxious come and attend my next workshop, that will teach you tools to overcome anything!