Category: A day in the life …

Raindrops …

The rains continue to fall.

It rained on St Swithin’s Day and so we expect another 40 days of it. As each drop of rain falls, I feel my fear and worries rise. I am once again picking our son up from the floor following a seizure induced fall.

His new specialist epilepsy neurologist is seeing us soon and I am documenting his current condition in his ‘seizure diary’. It does not make good reading.

I fear how I will convey this crucial information. I can talk about epilepsy and autism as well as his other conditions fluently and with confidence. But this meeting will be about our son. When I talk about the pain and torment our son lives through each day, I am always overcome with emotion.

The diary will help, and it will contain thoughts and questions that I will refer to if I need prompts. I am not expecting anything in particular, we have been trying different things over many years now. But his condition is getting worse. In front of our very eyes, we see the changes.

My fears are as plentiful as the endless raindrops falling outside. I just hope this new neurologist listens to my story and commits to continuing to support us through whatever the future holds …

Without Title …

The portable alarm that I always carry with me in the garden started sounding. The paving flag that I was carrying at that moment as I work on our son’s Garden project, slipped from my hands as I was startled by the alarm. It fell scraping the skin off my shin and caused excruciating pain. My wife was indoors with our son, but something had happened.

Racing indoors, I find our son on the floor contorted into terrible positions as my wife is trying her best to comfort him.

Quickly discarding my gardening boots, I rush over to them. This was the fourth Tonic Clonic seizure our son was having already this morning. He had had at least three each day on the previous, I forget how many days.

There was a difference on this morning. The count had already passed three minutes, four minutes, five minutes, now we were passing six minutes. Our son is not breathing. His body twisted so tightly. Unresponsive, but I can feel his heart beating so rapidly in his chest. I have the syringes with recovery medicine in my hand. Seven minutes. I try to prise open his mouth ready to administer the medicine. His jaws locked vice like. He begins shaking violently. He is coming around. My prayers are answered once again. It takes a long time before his trembling body relaxes, but once again, it does. Returning the recovery medicine to its storage place, I cradle and comfort our son for a long time.

I don’t know where I got my strength from, but I carried him outdoors and into the garden. He enjoys the fragrance and colours of the flowers. As I hold him, his face turns blank and eyes glaze over as another seizure is starting. “Can’t you make it stop?” he says quietly to me. A breeze blew and petals of the iceberg rose fluttered over us. “It’s snowing” he says as his eyes begin to regain focus. I am certain an angel walked past us at that moment.

His awareness is returning. He looks around him as if to ascertain where he is. He looks down at my leg “You have jam on” he says as he sees my scraped shin, still bleeding down my leg. – Don’t garden in short pants!

Our is suffering from four types of seizure now. I think back a few years when he would have one attack over a two or three week period. Now, we cannot leave him alone for a minute as they strike without warning and multiple times a day.

I share this story as I know many of you have taken Marc into your hearts, but also it is a diary, a journal that I often look back on to reaffirm memories of those better times as well as the bad times. Memories which may, one day, be all I have …

As a postscript, this story is from a couple of days ago. Our son is again calmer, and although the seizures persist, he’s ok

With trepidation …

… I reach for the door handle of our sons room. The chill of the metal handle send shivers down my spine. Each morning is the same. This morning followed a night through which our son spent most of it convulsing. He fell into a restful sleep only a couple of hours earlier and I prayed he would continue to rest easy.

Pushing the door open I listened for any sound from within. The door brushed over the bedroom carpet. No other sound. The room slowly revealed itself. Our sons chest of drawers, on top sat his television, drawers full of CD’s and DVD’s. Then I saw the chair that I had spent most of the night at our sons side. Our sons bed, comes into view and his seemingly small contorted body, still, ever so still.

As with each morning, I’m looking for movement or sounds that reassure me that SUDEP has not taken him. Nothing. I move closer, his body is rigid from the seizure he is having. He holds his breath. Motionless. His head twisted in an impossible angle. Kneeling at the side of his bed I reach out and cradle him. His motionless form begins to tremble in my arms. I speak softly to him and resist the need to scream out myself. Trembling turns into more violent jerking. He lets out a long breath and gasps for air ….

The soiling does not matter, the bruising from uncontrolled thrashing does not matter, what matters is the gradual recovery and keeping him safe as he returns to us.

The deathly white complexion starts to give way to a flusher look, his eyes, lost somewhere out of sight, slowly drop back into view. Bloodshot and as yet unseeing. Now panting for breath the jerking subsides, then trembles, then still. His heart beating at an incredible pace.

Epilepsy is often controlled through medication. Sadly around 30% of those with Epilepsy are resistant to medication and struggle as our son does.

We fear each morning as we check on him. His seizures are now occurring daily and several times a day. Moments of relief allow us to motivate him as best we can, though his pain and his terror impact him greatly.

When the pain eases I try and get our son to pick up a camera or simple to sit outdoors in the garden and enjoy the embrace that nature can offer him. We do less than many, but we do what we can.

When the time is right …

If there is one thing that lifts my spirits, it is when the story of our family journey is heard by someone who takes something from it, and it makes their own journey a little more bearable.

I have spoken before of the echoes of people on this lonely road. A road less travelled but up ahead there are those who have experienced that little bit more, and if we share our awareness, some on this same journey behind us will hear our own echoes. And maybe, it will help them.

I was able to share our experience with the National Autistic Society once again and a family has something new to consider. My response will be published in their next magazine for a wider audience to read.

We try to make our footsteps clear, so that others my see them.

We grasp the opportunities and take an adventure. To stimulate our minds and capture new memories. The time is right and ensuring all care is maintained, we are acting upon it.

Behind the pain …

“Think of all the beauty still left around you and be happy”
(Anne Frank)

The pain from the seizure slowly subsides, his mind erased of memories. Our son is now gripped by the terror that autism brings. He needs strict routine. The seizure has removed that sense of familiarity. Memory loss. I know what is going through his mind. “Where am I” “what day is it” “what time is it” Eye’s displaying the fear he feels.

Recovery from his epileptic seizures takes much longer these days.

Epilepsy and autism entwined together. I continue to hold him, calmly talking and reassuring him. He is desperately lashing out at me, verbally and physically as he struggles to understand what is happening to him. It will pass. It always does. Right now, he is frightened. I will not shirk my place in supporting him. I hold him. “Look at me” I tell him, carefully averting my eyes so that he does not feel threatened by eye-to-eye contact. “Keep looking at me and take deep breaths” Gradually, familiarisation of my face and his environment returns. Breathing comes easier. Calmness eases his muscles and his terror.

The seizure attack and ultimate recovery time takes around five hours. Still, a residual tiredness persists which will take another day or two. I move him into the quiet area of our home. An area of resting colours, quiet music, and relaxed seating. Together we spend the next few hours just relaxing, my talking, our son has become non-verbal and so my words are not responded to.

It is easy to say, as many do, that our son ‘suffers’, I view it differently, in that this is how his world is. I need to embrace it and understand it. When I can do that, I can empathise with his understanding and together I can help him fly once again …

Adventures …

Hesitation and apprehension deter the initial excitement of any new adventure. Needing the security and comfortable safety of familiar surrounds, our son starts any planned adventure with resistance.

Unable to visualise or bring to memory past experiences, the thought of doing something new brings on deep anxieties of the unknown. Similar to how most of us fear the dark. Only because we cannot see what out there and latent natural instincts kick in. There is nothing to fear, but we need to take our son on a lengthy journey of preparation before we go anywhere.

We route out any photographs of previous similar adventures. We talk through what happened and what he experienced. Gradually if our explanations have been detailed and positive enough, our son will begin to recall key aspects from that time.

As military personnel will tell you, before every mission, they plan and prepare. Prepare again, review those plans, and prepare again so that when they arrive in the designated location it is as if they have done it all before and are well prepared for anything.

Now, I am not suggesting a day out with our son is anything like a military operation, but our own family planning and preparation does need that same military and disciplined approach. What if he has a meltdown? What if he has a seizure? What if he becomes travel sick? What if he reacts adversely to his medication while we are away?

We approach it by covering off as much as we can. We try and ease the fears about going out, through discussion and recollection and we do not deviate from those plans.

If all goes well, we will generate happy memories to keep safe and to reflect upon as we plan for the next adventure. If anything does happen, well, we handle it calmly and supportively so that it is not remembered as the overarching thing that may have ruined the adventure. It does not and it will not.