A day in the life … – Page 4 – The Resilient Gardener

No possibility of adventure …

The sound of the teacup hitting the breakfast bowl echoed off the kitchen walls as our son dropped his cup and went into yet another seizure. That he dropped the cup did not matter, as he swung involuntarily and knocked the other dishes off the table onto the floor, ending up in many broken pieces. It did not matter; he had his medication in his mouth and started choking; that did matter. For this very reason, we never leave him alone to eat, and I had to undertake the Heimlich manoeuvre – not for the first time – to clear the blockage. The tonic-clonic seizure went on for several minutes. All plans of an adventure that day vanished as they had each day this week.

It is a bad week for our son. Multiple seizures each day have marred his ability to do anything other than spend time recovering from them. One day, we counted twenty-three attacks. Each of the other days, he had no less than six in the day. I have spent all week sitting alongside him, cradling him each time his mind is torn from us, reassuring him as he returns to us, and we listen to endless calming music as he stares unseeing, trying to recover.

Epilepsy Awareness Day, Purple Day is fast approaching, and we do what we can to support the message and bring understanding and awareness to how this condition not only torments and devastates the lives of those affected by it but also how families are impacted by it too.

A moment in a life …

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.

Untitled …

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 …

Persevere …

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 …

Make it stop! …

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.

One more day …

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.

Old Fashioned Songs …

“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 :-))

“What do you do?” …

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.

Helplessness …

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 …

Black & White …

“If you see the world in black and white,
then how can you see the beauty
in a rainy day”
(Unknown)

Black and White, Yes or No, Up or Down, Now or Never, Hot or Cold, Stop or Go …

Over the years, I have learned that severe autism has given our son a choice. A choice of one, or the other.

Helping him understand, ‘maybe’ or ‘what if’ or varying degrees of something is a real challenge for him and something many will not understand.

In the garden, as he helps me, I’ll ask him to dig a hole, he doesn’t ask “how deep?” he will just keep digging until lack of energy stops him …

We never give up, that essential support for him.