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”

A man is waiting for the bus. I see him here often. He has a disability of some kind, but he gets himself where he needs to go without any assistance. Today he has wet himself. He has a long urine patch down the inside of his leg. It doesn’t appear to bother him. He gets on the bus, and as he walks by, we shrink back in our seats to avoid contact. We are disgusted. I see the looks on the other passengers faces, they too can not look away and their eyebrows furrow in a painful expression. There is a very long string of drool that is dangling from below his chin. The drool bobs to the same rhythm of the city bus. I have a strong urge to go and wipe it for him.

This makes me think of my son.  I am grappling with all that is he is, and who he may be.  Am I delusional? Will he be like this man on the bus, with drool hanging from his mouth and no one to take care of him.  I don’t think my son gives the impression that he has a disability.  I think the impression that he gives, is that he is immature, hyperactive and impulsive (not to mention sweet, sensitive and funny). The neuropsychological assessment resulted in a ‘diagnosis’ of Mild Intellectual Disability. Perhaps as a snapshot of today, I agree with this, but not in terms of prognosis for the future. But part of the definition of MID is that they will always be less capable than their peers. The diagnosis was partially based on his inability to do some skills for himself. He, for instance,  can not tie his shoes, but I don’t buy him shoes with laces anymore. If I made him wear shoes with laces would he learn how to tie is shoes?

The drooling started after we added in Depakote, an anticonvulsant. Although, I know it is the cause, even I hold him responsible and judge him for the drool that he doesn’t realize is hanging from his lips – and that is so unfair. He also has a smaller lower jaw and will need orthodontics to fix that, which further exacerbates the problem of extra saliva production. His jaw makes it difficult for him to chew, and to keep his mouth closed. Also, his two front teeth are both chipped from the violent head drop seizures that he had/has. Thank fully they are far less frequent and severe, but at the height of the disorder he twice hit the bathroom counter- with untimely seizures whilst brushing his teeth. We have fixed his teeth with large fillings, but he says they feel weird and he hates them.

His seizures started at 7 years old.  In retrospect the problem became apparent or started when he was 6. He was sleeping poorly. He became moody and withdrawn. He chewed on the sleeves and necks of his shirt incessantly. At his family birthday party when he was 7 years old, he only wanted to do his Lego set. He did not engage with any of his family members at the party. He did not smile. The seizures started a week later.

But when you look at him he is vibrant boy with a light in his eyes. He doesn’t have an intellectual disability – he has a seizure disorder that disrupts his sleep and memory consolidation. It also affects his executive functioning skills – his ability to focus, organize and stay on task.

I am used to helping him with many things. And it is very hard to know when and how to draw the line with how much to do for him, especially now, as he is getting older.  When seizures were very active, I rarely left his side, that way I could catch him if he fell. I put my hand in front of a surface if we were out at a restaurant or standing at the counter of a store. We got rid of the dining room table, and I put a cushion of towels on the sink when he brushed his teeth. It helped certainly, but it didn’t stop him from occasionally careening into the toilet or having a full drop seizure where he would hit his head on the floor at school. He has had goose eggs in the middle of his forehead that were the size of golf balls. He has had a hard life – and I have too, seeing hm go through this, feeling so helpless, is the hardest thing I have ever had to do.

  He was in a regular classroom up until half way through grade six, and although no one ever said he could not stay in the regular classroom, the problem was, that he felt different. The other kids knew he didn’t have the same abilities as they did. They saw him have seizures and it scared them. He sat alone. He felt alone. He hung out with the older kids at recess, perhaps he felt accepted by them because he wasn’t expected to be on par with them, as he was younger. He acted older in their presence. He puffed out his tiny little chest and strutted a bit when he was around them. But in the classroom with his peers he felt ostracized – and he was no longer doing any of the same schoolwork. He decided that he would like to move to the classroom where he will get more help and that has kids that are working at the same level as him – that’s how I described it – and although I loathe the diagnosis of Mild Intellectual Disability – it is that diagnosis that has got him into the General Learning Program. Now he feels a part of things. Now he even feels on top, because in this classroom there are kids that are worse off than him. He wants to go to his home high school for grade 9, and I tell him, that he can, but it doesn’t have a special classroom in it – so I am not sure what he will be able to do. Yes, he feels better in this classroom and he is working at their level… but will they require as much from him? Will they push him enough?

He used to be on something called the ketogenic diet. It helped tame the inflammation, but never got rid of the seizures for longer than 3 weeks. He was a picky eater before that as well, but on the ketogenic diet he had to finish his meals or the ratio of fat to protein and carbohydrates would be wrong and we could lose seizure control. The stress of it was immense. Meals were a pressure cooker: preparation and execution, both for him and us. They still are hard.  These days he is on medication instead and can eat what he wants, but he must have very small bites, he needs to eat slowly, and so he doesn’t get very many calories at school. He struggles to eat his vegetables and fruit (like a lot of kids), but the difference is that the repercussions of him being unhealthy – are much more immense. I homeschooled him for part of grade 4, which made a massive difference for Grade 5. Seizures were active at that time. It was very hard and frustrating to teach him. He will learn how to do something, but not retain how to do it the next time. We cycled through the Grade 3 skills, mastering and forgetting them repeatedly.

                Anything can trigger a seizure, being too tired, too emotional, too hungry, too hot, too excited. He walks on a tightrope. His last seizure was 11 minutes long. That is the longest seizure he has ever had. Before recently he had never had a seizure longer than 2 minutes. What are we doing wrong? What do we still need to do? What caused the seizures to begin with? No one knows. No one has these answers. It doesn’t even feel like anyone is asking these questions -except us of course. We ask these questions.

Where does my shame come from? It is related to the shame I felt on the bus for the young man who had pissed himself and had drool dripping from him. Sitting close to him on the bus was painful for me. Why? Why is disability painful to see? Where does that feeling of shame come from?

It is my responsibility to teach my children to grow up and become independent people, if that doesn’t happen it will feel as though I failed. Perhaps, if I accepted that my son has a disability – I would let myself off the hook. Resign myself to a different life of wiping his chin and taking care of him. This life scares me, because I always thought I would get my life back one day. That one day – I would live for myself again. I don’t accept that he can’t learn things eventually. He will learn to tie his shoes when he can’t find Velcro shoes in his size or when I force him to.

People don’t realize this can happen to them – or they don’t think about it anyway. I don’t blame them – I didn’t think about it before either. Perhaps there is an assumption that we did something wrong or it’s in his genes; however, there is no evidence to indicate that either of those thngs are true. Your perfectly healthy little boy could one day wake up and be different. I feel shame because people think I have done something wrong or have passed on inferior genes. My shame is related to your judgement. You judge to save yourself from this plight. Next time you cringe at someone with a disability. Someone who isn’t taking care of themselves properly – remember that it could happen to you or someone you love.