Every day there are moments for us all. These moments create memories. Memories that will fill our lives.
Some people are blessed with the ability to see a single moment as fulfilling as a full life itself. What happens in that single moment captivates, enriches and maybe even provides a touch of apprehension.
Look for your own moments and allow them to enrich your own day and not let them pass you by.
When your child is unwell, your heart aches as you try all you can to take their pain and discomfort away from them. Much preferring to suffer yourself in their place.
As a parent of a child born with special needs and disabilities, you feel like you have been smashed into a million pieces, not knowing where all those pieces have fallen so unable to put yourself together again.
You and your spouse do all you can together to hold those millions of pieces in place, but the missing ones allow your spirit to drain away as if through a sieve and nothing can stop it until you unknowingly fall into despair.
Nobody prepares you for the emotional damage being a parent and a carer will be in the years to come after your child is born and placed, helpless, into your arms. As each year passes and each year you get older and a little less able yourself, the demand on your emotions becomes greater.
My solace comes from walking and working in the garden, but even with our child’s declining health and limited time to do so, that moment of peace has also been taken from me. The moments I do get to go outside, I see the garden dying as if to emphasise the situation we face. Box hedges stand bare as blight ravages the bushes, autumnal leaves fall to the ground like tears, and trees stand bare like skeletons.
As I stand with all hope lost, I wonder how I will regain some resilience to deal with the ongoing demands. Those thoughts are interrupted by the alarm indicating my help is needed. I turn my back on the garden once again and return to the house to face the current trauma …
Deep in his eyes, I can see the rumbling of demonic rage brewing. He is once again lost to the effects of medication. Anti-epileptic medication. He is drug-resistant, but these drugs are all we have. His health deterioration has been speedy compared to the previous years. “We need to try something,” his consultants say. And so, we do.
A new medication that serves to sedate him in the hope that being more vegetative, he will not have quite so many or severe seizures. The impact is more immediate on his neurodivergent mind as he tries to deal with that sedated feeling. He is confused, anxious and ultimately frightened by not feeling the way he would normally. He tries to fight it. He tries to understand what we are explaining to him. He fails. Basic instinct kicks in and the once-managed rage resurfaces with such ferocity I struggle to contain it.
Such violent verbal attacks, confused feelings, and his mind in turmoil. Treatments for epilepsy can impact so negatively on the characteristics of autism. His consultant urges us to persevere for a while longer, we need to understand if this additional medication eases his uncontrolled seizures. I pray that I have the strength and resilience to continue and support him. His anger is not his fault. His condition is not his fault. It is hard for him. Every day it is hard for him just to get through it. I once again need to learn how to walk on eggshells and not to take personally the attacks I receive.
We will come through this, I know we will, but supporting a person with such additional needs is hard …
He remembered nothing. Pain is all he knew and all he was feeling. His whole body ached terribly, and his head hurt him so much. He sat on the garden bench with his father. Snow now falling heavily on them both. Neither of them moved. The snow made no sound as it fell. It was covering the ground as well as the two men, sitting, just waiting. The world was turning white around them. It felt as if all sound had been silenced. Turned off. The quietness was comforting to him in a strange, and unclear way. The evening remained totally silent. The boy considered quietly to himself how he thought he could hear each snowflake as it hit the ground. But he was unsure. A soft rustle as each one nestled itself in with the millions and millions, billions even, that had already fallen. Interlocking so precisely.
The boys’ eyes flickered ever so slightly as he watched the flakes fall. He saw the intricate detail of each and every one. The moonlight reflecting off them ever so slightly. Colours almost blinding to him as they fell in the limited light. All their individual and magnificent shapes in sharp detail. He became aware of his breath making clouds in the cold air in front of him. Clouds of breath which were looking thick and dense like smoke and then moments later, dissipating in the cold air. He was breathing deeply. In through his nose, and out through his mouth. It was rhythmic, but why? He sensed something very uncertain, like he was somehow under instruction, but he could not recall what. Why was he breathing like this?
His neck ached terribly as he tried to turn to look at his father sitting quietly at the side of him. His father looked almost comical as the snow sat in heaps on the top of the hat and its wide brim that covering his head and sheltered his face. The snow was also building up on his shoulders. He did not move. The boy was becoming aware that his father’s arm was wrapped around his own shoulders, pulling him close. He felt a sense of warmth and calm as he sat there. A familiar comfort. He felt safe. He did not know where he was, or why he was there. The boy then became aware of a tear that had run down his father’s cheek and frozen over in the cold. Glistening in the same moonlight he saw reflected in the snowflakes. He saw the colours, almost rainbow like in that tear. He saw the furrowed brow and creases around his eyes. The boy thought how old his father looked at that moment.
He was trying to understand why all this was happening, but thoughts did not come to him. He could not form the questions in his mind, though he sensed it was something to do with him. He wanted to say something, but no words came. Why could he not speak? He could not remember how to form the words or bring to mind which words to use. His mind was racing, trying to recognise where he was. And why he was there. He felt a worsening pain in his chest as he became increasingly anxious. Why could he not make sense of it all?.
The boys’ eyes moved slowly around the scene in front of him. Everywhere was white. Everywhere that is, except for an area not too far in front of him that had a deep impression in the snow and the green of the grass was still showing through. Almost, he thought, as if something the size of his own body had been lifted from that place. A place that had not yet been fully covered by the falling snow.
A blinding light suddenly passed before his eyes. A pain deep inside his head began. He realised that he knew this pain, he had become very familiar with it. He hated it. It was building so much more than that which he was already feeling as he sat there. The pain grew in intensity, and he could sense he was groaning involuntary. His vision went black. He could see nothing; he could feel nothing. Nothing but this now agonising pain in his head. Spreading once again throughout his body. Such pain in his eyes. He wanted to pull his hands to his head. To hold it, as if that act would ease the pain as his head was in the palms of his hands. He could not make his hands or arms move. He felt sick. He felt as if his mouth was filling with sand. Choking him. He could not breath. His chest was thumping faster and faster until it too ached. His head hurt so much, and he could not feel his body at all. The pain grew. He involuntarily held his breath. Choking on the sensation of sand in his mouth. His whole body began to ache as if some invisible force was crushing him.
Then suddenly everything stopped …
As autumnal feelings grip us. A chill wind and cold rain embrace us each time we step over the threshold. Leaves changing colour and eventually fall to the ground like tears.
For many, autumn, or fall, is a season that is looked forward to with its striking colours and sounds of crisp leaves crunching underfoot.
Each moment and aspect of the garden offers a chance of sensory stimulation. Maybe even a lesson or two, helping us understand the world just a little more. The is nowhere better than the magic of a secret garden once you know where, and how to look.
The days plans come to an abrupt halt. That guttural moan we have come to recognise with an oncoming seizure screams out. Our son is gripped by another seizure, his second today. The first, awakening him from his sleep and now, contorted into terrible shapes alongside me. I fear his neck may break as his head is swung so far over his shoulder. I cradle him, ignoring the flaying arms and legs that hit me.
This was developing into a bad fit. I gradually lift him off the couch and lower him onto the floor putting him in the recovery position, checking his mouth is clear and having my fingers bitten in the process. As he lays there shaking violently, I lay with him, trying to bring him comfort and talking to him all the time.
I count seven minutes before he shows any signs of relaxing. Eventually he looks at me with eyes so bloodshot they look like they are bleeding. He doesn’t see me even though he is looking but he says, in a strangely coherent string of words, “I can’t do this anymore. Make it stop”. I know not what else to do, but to be there and protect him, and to comfort him.
Sometimes there is nothing else to do, but to pray. I pray that our Lord would take something of me and allow our son to be free from this endless nightmare he suffers …
It takes three hours for him to become relaxed again. It will take the rest of the day, maybe longer for him to return to how he was before todays seizures. I fear that before he fully recovers, as is frequently the case, he will succumb to more, and the cycle starts again …
I often read from other Epilepsy support groups, ‘You are a Warrior’ ‘Do not let Epilepsy define you’ ‘Live your life, not that which Epilepsy dictates’ … All well-meaning words and sentiments, but our son suffers so much, so frequently and no matter how much we do not want him to be defined by this condition, we do have to consider its impact first, and then live in whatever time is left.
As the rain clouds parted, eventually, I had an opportunity to wade my way through the garden and draw up yet another ‘new’ to-do list. Flattened plants and flowers due to the torrential rainfall shows the vulnerability of the garden to the prevailing weather conditions and changing climate.
I reach the small garden pond where I always end up and pause. The reflections in the water allow me a different perspective of seeing things. This reminded me of the very painful conversation I had recently had with our son’s neurologist …
***
My recent consultation with our son’s new neurologist gave me an opportunity to explain and demonstrate in the reports I always maintain how his health has been declining. Worsening seizures. Terrible, painful, and debilitating seizures. Multiple times each day. They are now so bad and frequent that we need to be with him constantly to make sure he doesn’t fall, or choke, or suffocate. We need to remind him to breath and to comfort him during the worst of these attacks.
“Does he have seizures at night?” I was asked.
“Yes, five or six nights a week” was my reply. He also sleeps through the day. A time of recovery following the distress the tonic-clonic seizures cause. Even through this time, he will succumb to seizures.
I explained how we are in constant attendance and how we have cameras and sensors all around our home including night vision cameras watching over him through the night that we can monitor as he sleeps, being alerted to any distress. Rushing to his aid.
We spoke about our son being drug resistant. And then I was told, … ‘had we not provided the level of care and attendance that we do, then due to our son’s increasing seizures and the time they occur, it is likely that he would have already lost his life!‘
Even if he was in hospital, I was told, the level of care we provide, would not be matched. Given the clinical frailty assessment and our sons multiple and complex disabilities, a level of care that we provide him would not be deemed warranted.
It remains difficult to accept that medical expectation is that our son may not be living now, and how vital we are in providing a safe environment for him.
I know he is vulnerable to all sorts of threats, but hearing what I did, brought a new level of realisation. 60% of those who lose their lives through SUDEP, do so through fatal falls, choking, suffocation and other issues and it is these situations we protect him against.
Our son is considered at high risk of SUDEP. Any day, any time, any circumstance, could take his life as he succumbs to these seizures …
The reflection in our garden pond allowed me to consider that no matter how bad the situation is, I need to remember that we are making a difference, and enabling him to love, and be loved, another day.
“Sing me, sing me an old fashioned song
Bring me, back in my mind, to a time where my memories all come from” …
(Billie Jo Spears)
I have never learned to play the guitar or banjo properly, but our son does enjoy it when I ‘strum’ the odd chord.
Billie Jo Spears sang this song which has become one of our favourites and the first lines are so relevant.
The beat and rhythm of the song captivate our son’s attention and when he is having a bad period of sensory or cognitive overload and meltdown, quietly introducing this song allows his sense of rhythm to gradually calm those extreme random terrors of confusion.
As Billie Jo sings (or even when I try it) the song does serve to pull out those memories of better times from the deepest darkness of his mind.
Our music, flowers from our garden, memories of magical moments – including the horse that bit me (a whole new story!) all serve as well if not better than any medicines.
Have a great day everyone :-))
My reply was, that ‘I catch him when he falls, comfort him when he cries, and pray for him while he sleeps …’
The question was intended to ensure I have an escape from my focus of care for our son. His new neurologist did listen to me. I told her about how he has deteriorated, she looked with interest at the seizure diary that I maintain and she offered some clear understanding about how a particular type of seizure is causing certain characteristics affecting him.
She looked back at EEG’s and MRI’s and the dozen or more anti-epileptic drugs he has tried over the years.
In conclusion she told me that, there was nothing more that can be done, other than trying to mix up the medication again and hope some combination brings him some easing to his torment. She did however say that it is clear our son is drug resistant.
I asked about Ketogenic Diets, I asked about CBD treatment, I asked about Vagus Nerve Stimulation therapy. “No”, “No”, “Only around 25% of the people treated by this clinic see partial improvement which is not high. In our son’s case, this is an option to try, but not recommended”
“Carry on as you are doing” is in truth, all I expected, and, all I received. “There is no more we can do” still ringing in my ears.
As I manoeuvred his wheelchair to leave, a tonic-clonic seizure gripped him and contorted his body so much, it was as rigid as the chair itself until he began to relax and come out of it. The clinic door shut firmly behind us as I was trying to comfort him.
“Come on son” I whispered into his ear. “lets get you home. We will deal with this together, and with the support and encouragement of a number of virtual friends who also care”
I sense that today is the first day of something different, what that something is, only time will tell.
A sense of helplessness and despair washes over me as all I seem to be able to do is to watch as our son fights these increasingly frequent in number, and tortuous seizures.
I hold him. Trying all I can to comfort him, and to keep him safe until he returns to us from wherever these demons take him.
My presence is needed more and more as I shadow my son’s every move. Catching him when he falls, protecting him from harm as he collides with all things as he loses control.
Just being that comforting presence he can rely upon, no matter where his seizure torn mind is dragged, and that will never leave his side …