I wrote this post on my personal Facebook Page almost 2 years ago.
2 years ago Carter was a newly Diagnosed Type 1 Diabetic and we were just beginning to live again after a month of Hell following his Diagnosis in the March of 2016!
For many reasons, I never published this post here on HWLN..
I wrote this post as a promise to Carter that I would do everything, give everything I have, to keep him safe and prevent him from suffering and a painful existence. To create a world in which he can be healthy, safe and happy.
I wrote this post not knowing that I would be able to keep my promise.
I wrote this post BEFORE I knew there was another way to manage his Diabetes.. A Better way..
I wrote this post one night, as the world slept and I sat in fear of what we’d been through and what life had become.
I wrote this post as a way to stop my brain from working – over and over.
I wrote this post in hope that once I got it out, I could get a moment to breathe..
I wrote this post as a release for myself.. A way in which to help me heal and get it all out of my head – for a while..
I wrote this post and I don’t know if I ever intended to publish it, I was in a dark place..
I wrote this post from a place of hopelessness, lonely and feeling lost..
I wrote this post when it felt like I was the only person in the world to ever feel like this..
I am publishing this post now, in case it will help just 1 person who may find themselves in the same place where I was 2 years ago..
I feel ready to publish this post now because even though life is in many ways, still the same. We are a whole world apart from where we were when I wrote this..
I no longer feel hopeless, lost or lonely and for that I am forever grateful. This is my hope for whoever reads this post – that they too will begin to feel the same..
It’s like stepping out into the sunshine.. Into the light after being buried under a never ending, suffocating mass of dark. Of winds, hail and heavy, cold, torrential,debilitation rain – for so long..
Don’t be mistaken: I am not comfortable nor at home, out in the sunshine yet. Maybe I never will be? But I prefer it here.. Life is better now.
So much better..
Maybe finding Dr Bernstein, Type1Grit and Low Carb saved me? I know 100% that it saved my boy!
I do believe that to a degree, Dr Bernstein saved us all – I feel like he handed us our life back. We have never met him yet I feel so grateful to him..
Low Carb really did change the entire game for us.
The support and sense of belonging from the online community Type1Grit eradicated all elements of loneliness from my quiet, reflection time too..
From the much needed knowledge, the confidence and the support I found here, I created a new world in which we live now.
I birthed this Blog and our Facebook Page ‘HowWeLiveNow’ and take great comfort and pride in sharing our journey and experience, in the hopes that it will help and inspire others to do the same…
It’s not easy to be so open on social media these days. To share your life with a world renowned for passing judgement, for wishing harm on people who do better than you and for living in a self-centred, ignorant bubble of ‘well I’m OK so sod the rest’..
I didn’t take the decision lightly to be so open with our lives, but I did it because if by me sharing our journey and my personal struggles can help just 1 person not feel the way I did for so long, or 1 child from suffering the way Carter suffered, then thats everything I could have dreamed of and more!
So thats why I did it.. And thats why I take the hate from the ones who drop in from time to time.. They don’t matter..
Because this helps people.
Having someone who you can relate to, who has been where you are now,. Someone who is able to put into words exactly how you are feeling, when words fail you, when you feel lost and hopeless and lonely..
To find someone who walks the same path you walk – even if it’s on the other side of the world..
It helps! It ALL Helps!
To Step out from the Dark – into the Light..
So, I am publishing this post in the hopes that it will help someone to step out from under their clouds too..
Like I did!
Just take 1 step: put one foot in-front of the other and then put the other foot in front of that and walk – and just keep going, step by step…
Just keep breathing…
Because one day, when you least expect it – it will get easier, and the next day, the same thing happens again..
Of course it’s never easy all the time, Type 1 sucks!! But the bad days where we are now, are far easier than the bad days from before.. And the good days merge together, becoming more frequent and then the momentum starts.. You gain some amount of predictability and the panic state you lived in – eases.
It just happens..
The fear never leaves you – but it lightens.
The heart stopping, breathless, adrenaline driven episodes that were once a constant, normal state of daily life – lessen and before you know it: life changed, but you didn’t notice it. You didn’t even realise life changed until you look back and you are a whole world away from where you came from..
So, I share this post and I hope that it will offer you some reassurance that you’re not alone, that it is normal and that there are brighter days to come..
It feels impossible and you won’t believe me, but it does get easier and it does become less frightening, less intense and just – more ‘normal’..
But not normal…
A new normal..
A new way of life…
Diabetes is never easy.
But it’s easier now..
I didn’t realise when it became that way for us, but it has..
I hope as I write this, that your time is coming too, very soon and until then, I am sending you love and cheering you on along your journey – you are not alone!!
Never give up!
So…. Here’s the post:
I am obsessed with Carters Diabetes right now.
I know that it’s all I ever talk about and all you ever see me post about… Trust me: It’s also all I ever think about too..
Right now, that’s what defines me but it does not define him.
He’s a happy, grateful little boy. But me; I live in a bubble of research studies, blood glucose numbers and carb counting. Probably a bit too obsessed, but those of you who knew me in my childhood will also know that Diabetes is not new to me, I grew up with it, it was responsible for the loss of my Mum at a young age. So I feel justified in my obsessive state – for now!
I was raised in a world of diabetes complications, of her hospitalisations, of doing most of my GCSE coursework at her bedside.
I saw just how brutal and dangerous this illness can be!
It frightens me!
My Mum was Diabetic from the same age as Carter, although poorly controlled I agree but it caused irreparable damage to her limbs resulting in numerous amputations.
Diabetes overcome her eyes and her renal function and finally her heart, which was ultimately responsible for her death.
Diabetes Frightens Me!
Maybe I frighten Me?
I am not Me!
I am not a logical, science-focused, critical, compassionate and courageous Nurse right now..
I am a Mum, a frightened, broken, lost, lonely and hopeless Mum!
And I cannot find my perspective…
It was very difficult to handle Carter being so ill and the fear from almost losing him was something you just can’t prepare yourself for or ever begin to explain.
I didn’t know it was possible to feel the way I did and for my heart to continue to beat. I remember talking to myself to remind myself to breathe, because I was certain that at any second my own heart was going to stop. Focusing on my out-breath to lighten the dizziness I knew I was experiencing from lack of oxygen because I wasn’t breathing, because my heart was racing and my body was producing too much adrenaline
The ambulance journey haunts me, lives with me and keeps overcoming me. Carter took a turn for the worse in the ambulance and to this day, it still haunts my sleep – and my wakened time. I was walking to the shops yesterday and an ambulance drove past me, I was walking down the street but in my mind I was in the ambulance, my teeth clenched, my heart skipped and I realised I was holding my breath again..
Sometimes when I close my eyes; we are back there, in the ambulance and my heart skips and then races; I can feel the palpitations and then the whole experience which just floods me. Floors Me!
I could have ran through walls with the panic and the adrenaline my body was constantly producing. I wouldn’t have felt the pain either. It was a total out of body experience, a blur of unbelievable fear and intense clarity amongst darkness.
It didn’t feel real, yet at the same time it was the most real and frightening experience you could ever imagine.
At the same time I had Morgan by my side. My son, someone who I birthed to care for and to protect for all-of-time. I had failed him. He was looking to me to be his strength, his solace and his guide. I was broken and had nothing. He was frightened and panicked and I had nothing.
Furthermore, I had Greg, my husband, my soulmate, my rock. He was looking to me to explain the medical jargon, to reassure him, to be his strength – as he was mine. I had nothing..
Subconsciously, I did support and educate them, I did it without even realising I had. Maybe it was my own way to cope too, to feel like I was doing ‘something’ and seeing them understand, helped me..
Morgan asked me to be honest with him, of course I lied, the truth would have killed him. He knew I was lying to him but it was an unspoken acceptance that we both knew and we just held each-other and took comfort in that..
Even when our family were there to offer assurance, their words blended into the beeping of Carters machines – nothing was relevant – no perspective whatsoever.
My Dad, probably the only person in the world who had the ability to help reassure me, to help me understand and find some perspective – he was there and he never left, but it didn’t hold a torch to how I felt at that point..
Nothing else mattered – nothing!
The ONLY thing that mattered was that Carter kept breathing – that he would survive.
As long as he was alive, we could handle anything – whatever the world threw at us, I didn’t care, we could deal with it – as long as he was alive..
And we clung to that – never left his side. Kissing him, stroking him, whispering to him: ‘keep breathing baby, come back to us, find your strength Carter and come back to me, listen to my voice, it’s Mummy, I love you, survive this Carter, please wake up’..
I found myself whispering in his ear constantly and it threw me right back to the only other time I had ever done that – when my Mum was in Intensive Care right before she died. We had gone home to bed after visiting her in hospital. The phone-call came around midnight and we rushed through. By this point she was already unconscious and on life support. We never got to say goodbye to her because she couldn’t hear us at that point. But you don’t accept that at that point – she will wake up – my Mum won’t die – she’s MY Mum!!
I remember stroking her and kissing her and whispering in her ear: she had to wake up, she had promised me she would walk me down the aisle at my wedding, it was her goal after loosing her leg earlier in the year. She would buy me a key for the house when I was 16, she would be there when I went to nursing school because that’s all she ever wanted for me. She loved me and I needed her. My dad needed her! I loved her..
I couldn’t help but link the 2 scenarios, as much as I tried..
This made it impossible to ignore the fact that it felt very much like history was repeating itself; Diabetes stole my Mum, it was going to take Carter off me too!
This was heightened when we were advised of Carters renal failure. It consumed me.
The measurements on his Catheter Bag and his Heart Monitor, his Blood Gas Results, His Ketones, Blood Glucose Levels – every 15 minutes, every 30 minutes, I was consumed by it. I needed to know!
I was riddled with guilt you see..
I felt guilty for bringing him into a world where he had bad genes.
I felt guilty for being so tired that I fell asleep when he needed me.
I felt guilty for obsessively working alongside my studies which kept me out more than it should so I wasn’t around to see how ill he was, and I felt guilty that it was my blood-line that caused this for him.
With that guilt came anger.
I was angry that this world was cruel enough to not only take my Mum but try and take him too.
Whatever faith I had, had gone.
Just left me…
A complete Crisis of Faith.
God was Cruel and I hated him!
I hated the whole world!
I was angry at my Mum for leaving me and not being her when I needed her.
I was angry with myself for having children, knowing I was rolling the dice with their health and that Carter now suffered because of it..
I hated myself and I hated the world and it consumed me.
I was riddled with guilt – so much guilt.
I was the mother who had accused her own son of faking being so sick, just because I went with what the Dr’s (who barely knew him) said, over knowing my own Son and that he was not a liar and that NOONE could ever fake being THAT sick.
I promised him I would never, ever question him like that again – if he would just survive.
I would never, ever not advocate and fight for him.
I pleaded with my Mum in my moments of silence, to give me a sign, to help me – to help him.
I prayed so hard.
But I didn’t believe.
Because if there was a God; WHY did he take my Mum? And WHY was my beautiful, innocent, precious little boy fighting for his life.
What God lets children go through what Carter had?
I pleaded with Carter to wake up, constantly whispering in his ear of all the things we would do.
There was a huge bath on the unit and Carter loves baths. From the second I saw it, I longed for just one more chance to be able to bath him, to run him a bath and wash his hair. I didn’t think I would get that chance again. I kept telling him when he woke up I was going to run him the biggest bubble bath in the world and he could stay in as long as he wanted – just please come back to me baby..
Wake up Carter.. Fight!!
Keep breathing baby!
I was desperate.
A miracle brought him back to us and his own strength of character saw him overcome all obstacles.
He has bounced back and he did it with such bravery. I am in awe of him (and definitely not as brave as him)!
I lay awake thinking of ways I can reduce impact to his long-term health. How I can help lighten the burden, how I can make life easier for him, less pain, less interference, less restrictions, less worry and most of all – less Diabetes.
Diabetes took my Mum, I won’t allow it to take him too.
So, Diabetes defines me right now, I am obsessed with it – obsessed with him.
I love him so much it breaks my heart!
I do what I can and I am always thinking up ways, researching ways and seeking out advice for ways in which I can be better – for him.
With cleaning and moisturising his feet. With treating his hands. With cleaning his teeth, planning his meals, with his fluid intake and his insulin sites and all things in-between.
I am obsessed with making him right..
And I will continue to do so..
And… He’s OK!
The time has come for him to reintegrate into school and normal life.
He is ‘normal’ and we have made that happen for him, but the cost to us as parents and emotionally as individuals will take a lot longer to overcome.
I am aware I have PTSD from the trauma of Carter’s diagnosis, possibly unresolved PTSD underlying from my Mum too and I am living with that.
I can handle that.
Sometimes it’s harder than others but I look at Carter and his strength, at Morgan and his utter bravery to see what he saw and handle it so well, to turn his fears and nightmares into researching and learning so he could be better and more knowledgeable for his little brother.
I look at them and I see so much.
I have to keep breathing – for them!
I take my strength from them for they are phenomenal and they deserve that!
I don’t see a future where I am not obsessed with Carter’s Diabetes, because I know first-hand how bad things can go – so quickly and how heart-breaking it is when this awful disease takes hold of you.
It’s our job to look after him and manage this for him until he’s old enough and responsible enough to take the torch, and it is our job to raise a boy who’s empowered and knowledgeable so he can live a normal life and make the right decisions regarding his health in a world where understanding and awareness is not what it should be.
But he deserves that – so I need to be better – for him!
So I will be – and I will learn and research and I will do everything I can and give everything I have to create a world in which he can thrive.
A world where he can be as safe and healthy and happy as possible – because I owe that to him.
I am obsessed with him!
But for now, he’s doing well!
His knowledge and maturity is outstanding – my Mum would be so proud of him!
He’s ready to start living normally again and that means I have to accept that too – for him.
As Carter is ready to go back to school, I am not..
It is by far the worst thing in the world to hand the most precious thing in the world over to someone who isn’t me, to care for him and keep alive when I’m not there.
But it’s the right thing to do – for him.
And he wants this..
So, when he goes back to school, I’ll sit by the phone (and pray it doesn’t ring) and wait outside with my insides screaming and my fingers crossed that he’s OK, because if he’s OK, that’s OK!
I am obsessed with Carter’s Diabetes right now. But I am allowed to be. It defines me because that’s my job – and he’s OK!
It defines me so it doesn’t have to define him!
💙 #diabetickidsaresuperheros 💙
UPDATE: I am grateful that I was so obsessed with Carter’s Diabetes and finding ways to improve his life and prognosis because had I not have been and if I was more accepting of his ‘fate’ at that point. I possibly wouldn’t have ever discovered Dr Bernstein and Low Carb… I am grateful now that my guilt then led me to do better for him..
Our life is a whole world apart from what it was when I wrote this, please do not judge, I share this with Apprehension but also Hope; that it is found by someone who needs…
#HowWeLiveNow #HWLN #T1Family #FORHIM
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