Everyday that the phone doesn’t ring is a good day.  As each hour passes without incident my day improves. Status quo has become the most beautiful thing in the world…. And there is a blessing in that. Before Declan’s seizures started at seven years old, I worried about the most mundane things, but now, mundane is glorious. This allows me to access myself in a more peaceful and meditative way – that my busy mind was previously unable to do.

 Don’t get me wrong – I still have a very busy mind. I think through data a large portion of my day. If Declan has a seizure. I think about everything we did that day, everything he said. I think about if he told me he was tired or if f I saw him go to the bathroom. I take note if he was upset about anything or if I lost my cool with him. I think about what he has eater or not eaten. I think about what supplements I have given him that day. I take special note of anything new that he had or experienced.  I look for patterns. I rework theories. I shape them and meld them in my brain. I challenge my assumptions.

 My quest to learn about as much about Epilepsy, the brain, inflammation, the immune system – I’m sure is a lifelong quest. I will never give up (#nevergivingup). There will always be something new we can try, or a drug or treatment that we can remove – if we are headed in the right direction I am happy – I have gotten to a point that I can live with the disorder, where it’s very existence doesn’t defeat and destroy me daily. Note that I said – if we are headed in the right direction. I do not feel I could cope with true disaster. In the grand scheme of things I know that we have been very lucky. We have a happy boy, who can go to school, take fun vacations, live life. We are blessed. For anyone who has lost a child or a child where the quality of life is so poor that it breaks your heart – I’m so sorry. My heart breaks for all the families that are going through or have gone through way worse than we have.

 I went through all the stages of grief when this started. I was in denial that it was serious. I questioned the Doctors about everything. I demanded to know how this had happened. I was incredulous to hear that they had no theories of why this happened – and five years later we are no closer to finding out.  

Then I was very angry. I was angry about the possible reasons that I dug up. In the absence of professional theories as to why – I put my scientific brain to good use and read everything I could get my hands on. – there will be future blog posts that focus on my theories and musings – but in short I think that his condition relates to gut health (or lack thereof), a hyperactive immune system as well as or possibly due to toxic overload and likely genetic susceptibility.  I was angry about what I read. About a world, where profit is the boss; a world where government depends on the finances from companies; companies that are in the business of man made chemicals and their use and proliferation.

 Next, I was profoundly sad, completely broken, undone. I wept. I screamed. At home, I sat in the bath and cred until I had no more tears. At work – when someone would ask me how Declan is – immediately the tears would spring to my eyes.

 And finally, I have some acceptance. I have a way to enjoy life again. When he is not seizing I revel in the beauty of the world around me – I am getting to know myself better and better. I have more time to reflect and be by myself than I have ever had before, as a parent. When the seizures return (daytime ones were gone for a year, but have recently returned) – I dive into it.  I take care of Declan. I give him all of me – and we get through the crisis. Then I sit with my sadness. I sometimes have a cry, but not always.  I don’t usually feel anger anymore, but when I do, I acknowledge that feeling and then put it in its box. I usually bathe or spend some time in nature. I sometimes connect with spirit, universal energy, god – whatever you want to call it. I have found faith: Faith in myself, faith in our love to get us through this and faith In the universe to guide me there.

Acceptance -  I am still working on. I have partial acceptance. I accept that this is my life purpose.  I accept that this life trial – and all that it may still entail – are a necessary part of my spiritual journey. I just watched a documentary called ‘Ram Dass – Going Home’.  Ram Dass is a spiritual author and speaker who has since suffered a stroke.  I leave you with a quote from him

“Suffering is the sandpaper, from the spiritual point of view, that is awakening people. Once you start to awaken, you re-perceive your own suffering, and start to work with it as a vehicle for more awakening.  – God comes to the hungry in the form of food”