One Year On: Part 1 'Hope'
This time last year was the final week of Sam’s life. I just wanted to reflect on Sam’s life and his time in hospital. The first part of my blog this week will focus on Sam’s courageous fight during his last week, and how hope was so important to us. Part 2 will share the utter awesomeness of my beautiful boy, and yes I know all parents think their child is awesome, but trust me Sam really was and still is!
Over the past seven weeks I have been reading texts that I sent to my close friends giving updates on Sam’s condition. In fact, I read those texts quite often, it is like reading a diary. I have also re-read his eulogy that I gave at his funeral. Some might question why I do, but I am trying to process everything that happened. I won’t say come to terms, as I can categorically say I will never come to terms with Sam dying. Processing it is a different matter, or coming to a level of acceptance that Sam has really died.
I still feel that Sam could walk through the door to our home at any given time. It feels like he is just staying at his dad’s, it is surreal. Every single morning when I wake up, reality hits me that Sam died. It hits me like a punch in the stomach and a knife being plunged into my heart. Every single morning I struggle to get up, struggle to motivate myself. All I want to do is pull the duvet over my head, go back to sleep and pretend this utter horror s##t show didn't actually happen. I can’t believe it has been nearly 12 months since he died. In fact, it is now nearly 14 months since he last slept in his bedroom, since I walked him to school, or I heard him say mummy, or when he crept into my bed at night and cuddled up to me, or we walked Daisy together.
I’m not too sure what I miss most about him, I just miss every single little dam thing. From the way he wiggled his bum when he wanted to make me laugh, getting him out of the bath and drying his hair, the sound of his breathing, the sound of his voice, his kisses, his cuddles, his laugh, his smile, his kindness, his ‘I love you mummy’, just physically hearing him in our home, giving him his goodnight cuddles and kisses, shopping in the supermarket for him, planning our holidays, or going on holiday together. It is utterly endless.
This week last year was the first time since Sam was in hospital, I was truly beginning to lose hope that he couldn't be saved. That one tiny four-letter word ‘hope’ is so very important, it can actually save lives, give us courage, gives us the strength not to give up. We all need ‘hope’ in life, particularly when we are facing the insurmountable, or an utterly desperate situation. Look at how important 'hope' was when Covid struck and we were in the middle of our first lock down. The Queen's message during that lock down gave us all hope didn't it? Reminding us better times lay ahead, it gave us strength that we could get through this.
I cannot begin to explain how desperate I became when I knew that hope was slowly slipping out of Sam’s grasp in that last week. Sam had fought so hard for six weeks, and I had clung onto that hope and wouldn’t allow anyone else to lose sight of it. It was so important to me to feel that everyone was fighting as hard as they could, and that they truly believed there was ‘hope’ for Sam. As my sister reminded me, I covered Sam's hospital room with photo's of him in happier times, so the medical teams could get to know Sam more, and realise how loved and precious he was. So they could see just how much he enjoyed life, and how happy he was. I was desperate for them to connect with Sam on an emotional level, which they did. (I am sure they didn't need me to do all that, they were just so amazing and caring; I called the nurses Sam's nurse mummy's). I also wanted Sam to be be able to feel all these precious memories around him, and hoping it would give him strength and positivity. I very much wanted nothing but positivity in Sam's room, I didn't want negativity. I was just trying in essence to do what ever I could to help him through this. I knew how critical Sam’s condition was, very early on we were given a 5% chance of survival. I knew it, but I just didn’t want to focus on it, I wanted to focus on hope, the 5%, it was paramount to me that everyone did.
But slowly that last week of Sam’s life I felt that hope slipping away.
My texts to my beautiful friend, who held my hand throughout all of Sam’s time in hospital, probably demonstrates best how my hope started to fade away. These are just snippets of Sam's time in hospital. So much more went on, the discussions, the investigations, the treatment, the side effects, the caring for him, the reading to him, the playing music to him, the bathing him in body lotion, hair washing, and talking to him etc. Just basically loving him, and letting him now how loved and precious he was, and how we were right by his side fighting with him, and not giving up on 'hope'.
Thursday 22 April – ‘hope alive and kicking’
Sam’s stable currently but his seizures have returned after taking him off the anesthetic last night. They have restarted the horrible thiopental, purely due to its toxicity and hopefully that should control his seizures. But we are now back to controlling his seizures with thiopental. The CFAM (machine monitoring brain wave activity) is showing some periods of stability, with small bursts (of supression), then seizures for five minutes or so. This is going to develop during the day as the thiopental comes on (its not on yet the pump is on and line filling) and they start other drugs. Sam’s been on his ketogenic diet for around five days and his keto level are increasing. The team, in particular, Dr Davis are amazing. They have moved Sam to a private room for more privacy and so we can have more family visiting, and they have allowed Daisy to visit. They think that would be good for Sam and us. I am blown away by their thoughtfulness which runs alongside their professionalism and dedication. So, Daisy can start coming every day. We are keen to try cannabidiol now which they are looking into. So once more a new day is upon us, and our goal is trying to find a different way to climb the seizure mountain alongside our gorgeous Sam, who is fighting tooth and nail to climb it.
Monday 3 May (am) – ‘hope beginning to fade’
“hi lovely, Sam had an unsettled morning, with high temps and seizures. And he looked uncomfortable. However, in the aft after a bath (bed sponge down), and some of his escalation meds, can’t remember the name of it, he settled and his temp went right down to 34. I think it was the bath as he had been unsettled both mornings and after a bath he settles right down as it brings his temp down. I’m sure his seizures are heavily impacted by his temperature. And he has difficulty controlling his temp, it swings to the extremes. And I am sure this is linked to the experiences he was having the weekend before his seizure (before he became ill). He had no other signs of a virus apart from this crazy swing in temperature. I think he has another MRI tomorrow if he is stable enough.
Monday 3 May (pm)
So, our lead consultant was on today and he didn’t seem in any great rush to reduce his sedation (isoflurane) gas, but I think that is still the plan. But I need to understand how reactive he is going to be coming off the isoflurane when he is on so much phenobarbital. Sometimes I feel that they (consultants) must think I am a nightmare, as I am always questioning and putting my thoughts across. But wouldn’t any mother in this position do that, you just wouldn’t give up would you?
Wednesday 5 May
Having MRI now, may know results later today. He is being weaned off his isoflurane gas (sedation gas) but having lots of seizures. We are seeing if they are survivable, i.e. do they impact on his cardiac function, or breathing and whether we can get some quality of life in between them. Shitty week probably the worst.
Friday 7 May (am)
It was rough. MRI results are devastating. He has so much damage in the centre of his brain. Sam has been taken off sedation but has a breathing tub in to maintain his airway. He is not sedated any more but is not awake. He has permanent low-grade seizures continuously. He has minimal reactions. He has no gag reflect. My mum instincts are now saying our fight is over and it’s time to say goodbye. I don’t want him to be a vegetable, that is no life. He has another neuro assessment today, and more discussions and next steps.
Friday 7 May (pm) – ‘all hope gone’
We have all made the decision to let him go peacefully and with dignity. All agree he is getting distressed. They are starting sedation drugs which will allow him to slip peacefully away (by removing his breathing tube). I woke up in the early hours of the morning and knew that it was the right thing to do. All the consultants believe it is the right things to do as he is suffering. It is my final promise to Sam, as his mum to him, to do this.
Saturday 8 May
Sam finally fell asleep in his mummy and daddy’s arms at 2.40pm. He fought to breath for 90 mins after he had vent tube removed but with only 40% oxygen. We are beyond broken.
When Sam slipped away, we entered a world of utter disbelief and of complete and utter shock at what had happened in the space of seven weeks. Our boy so precious and so loved, and who is our complete world, has been ripped from us.
The love I have for my boy grows stronger each and every day. People say that time will heal the pain when someone dies, but it doesn't when your child dies. It sounds cliche, but I think you just get better at carrying and hiding it, of putting a mask on. The pain is always there, always ever present every second of every day. It actually gets harder the more time slips away from when you saw them last, from when you saw them happy, smiling, carefree, running around and enjoying life. You think about how cruel life is, how he should be here with his friends, going to birthday parties, creating memories, growing up, enjoying life, making his impact on the world.
What has categorically saved me is still feeling that I am Sam's Mummy. When your child dies, yes you are still a parent, but I found that I needed to find new ways to fulfil that role. Not just in 'name' but physically. I needed to be able to physically do things for Sam, be able talk about him, be able to think what would Sam have liked, what would he want me to do. Sam's Superheroes is so very important, it is very much Sam's charity, he is at the heart of it all and it enables me to feel like I am still physically being his mummy. Every decision I make, Sam is at the centre. It makes me physically feel I am still being his mummy, I am running the charity for him. It allows us to use his ever present energy to spread kindness and happiness in his name. What a beautiful, kind and thoughtful boy he is to <3
Sam is one-in-a-million in every sense, and I am truly thankful of the precious five years I had with him. He gave so much love, so much kindness, and so much hope to so many people. He gently showed us what really matters in life. His energy and love lives on and is propelling people forwards touching lives in ways that I hope he will be proud of.
Forever Sam's mummy <3