Today is exactly one year since you were diagnosed with type 1 diabetes. I’ve decided to write you a letter each year on what is known in the diabetes community as your Diaversary. I’ll give them to you when you are 18 years old and I hope it serves as somewhat of a literary time capsule of how proud I am of you and documents our family experiences being part of the dead pancreas gang.
On the day you were diagnosed the doctor told me you were hours from dying, she phrased it softer than this, but did say the team of Pediatric doctors would not have expected your brain or body to withstand many more hours of the dangerous levels of ketones and glucose that had built up in your body. They said you would have passed out or gone to sleep that night and not woken up. They weren’t sure how you had walked into A&E because you should have been in a coma. The doctors repeatedly asked me the same questions about your symptoms and timeframes, as if I was confused or giving them mis information. At a later date I was allowed to read your medical notes and I now realise it’s because they couldn’t believe you were still conscious and sitting up. You have a strength in you little one that not many possess and as I sit here writing this now, I’m in awe of what you have achieved in the face of such adversity. I’m so proud of you, each day you fight a battle no one else can see and few understand, so incase you are having difficulty coping with any challenges in life or I’m not around to tell you, I thought these letters might help you (and me) see just how far we have come and just how strong you really are. So here it is: My first letter to you, my oldest son, my firstborn, the bravest and most resilient 4 year old I know.
This time last year I was in shock and disbelief. As I lay with you in my arms in the hospital bed I knew life was about to change for all of us. I felt worried about your future, I wanted desperately to take it from you and protect you from the challenges you would have to face. I knew there was no cure for this disease and although I was feeling a mix of emotions, I had a fierce determination that I would dedicate my whole life to never letting this condition stop you achieveing whatever you want to achieve. To my knowledge the only thing you can’t do is join the Army. Whilst I have no expectations of what you will want to do as you grow older, I hope it’s not to join the military on the front line, because you are shit out of luck I’m afraid.
Your baby brother needs an honorary mention here. He was 10 months old when you were diagnosed. Whilst me and your dad were finding our feet learning all new things we needed to do for your care, your brother had to spend many times waiting longer than he should for things, being put down a bit too much and for the first few years of his life had two, more than usual, very frazzled and fried parents. I look at you both only a year between that time and now and I burst with pride at what champions you both are and how type 1 is beginning to intergrate itself into our lives, our normal. As romantic and idealistic as this may sound, I hope you remain good friends and it lasts into your adult years. I also hope by the time you read this you have stopped repeatedly stealing each other’s toy cars and hitting each other in the face, although you’ll be teenagers so probably not.
This last year you have experienced some intense, serious, emotional and physical upheaval. I’m not sure you are old enough to truly understand, maybe with being so young comes an acceptance of your reality, but I do worry where all your feelings must go when you have such a heavy burden to bare at such a young age. I like to think you drive them down imaginary roads in your toy cars, bounce them out on the trampoline or ride them away on your bike. Still, I create a small space each day to talk to you about the ‘big’ things you have to cope with. You may be too little to articulate it but you should be incredibly proud of yourself for all you have to manage. It’s more than most adults I know could bare and you don’t have a choice, each day you must take extra steps to stay alive and you do it with such grace that some days i feel so full of pride it brings me to tears. It’s real life superhero stuff and far more than you should have to handle.
There is a deep lack of awareness and education around Type 1 not only in the UK but all around the world. I’m ashamed to say I was guilty of knowing NOTHING about it until this time last year. People can unintentionally make comments that are insensitive or misinformed, although they mean well, they don’t really understand what it means to live with Type 1. I would have been one of these people. Please remember they are usually just trying to help, to support, to love and care for you. It is not your job to educate people about your condition if you don’t want to. It is by far the most pervasive and unpredictable illness I’ve ever heard of and so much is still unknown about it. It’s not just a few injections here and there, its not caused by too much sugar, it’s not that your ‘levels’ will ever stabilise, that one is my favourite. So I’m committed to helping raise awareness of what you have to go through and what it means to live with a life threatening auto immune disease. This is not to elicit sympathy for you, but so you grow up in a more tolerant and understanding world.
You are a gentle, kind, funny, warm, sensitive little boy who also has an assertive streak I’m insanely proud and slightly envious of. Sometimes when your blood sugar is too low or too high you scream and shout, you feel irrationally angry, you don’t want to speak to anyone, you don’t want to do anything, you don’t want to go anywhere, your head feels foggy, you feel dizzy and you can’t gather your thoughts or find the right words to answer what’s been asked of you. But all these symptoms are invisible to everyone around you. They can’t see your struggle so sometimes it’s hard to know just what to do. When you behave like this I see a scared and anxious little boy who has no control over what’s happening in his body and the way it makes him feel. I don’t know what that feels like but I promise you I’ll always do my best to try to understand and help you through those difficult moments.
To date you have had somewhere around 3,000 injections, 50 dexcom set changes where a needle is inserted into your back for 10 days at a time, we have pricked your little fingers 1000’s of times, you have lost around 500 hours of sleep where we have had to wake you in the night to treat a low or high blood sugar. You must be tired my little boy, but you cope so well. You rarely complain about the invasive and disruptive things you have to do to manage your illness, you are as stormy as a regular toddler when in fact you have a billion more things to contend with and still you smile, laugh, joke and play like every other kid I know. You carry it well, but I see how heavy it can be.
As you grow older you will always have a place to be with me and your dad when this disease causes you to burnout. Some days it’s really tough and it’s important you are allowed to feel whatever you want to feel about it. We fight to remain positive but space to feel the other things is just as important for your mental and physical health.
This year we have moved house, changed schools and we are currently in the middle of the global pandemic Covid 19. It’s not exactly what we’d had planned, me and your dad have put ourselves under a lot of pressure coupled with lots of change, but if type 1 has taught me anything this year it’s about the ability to adapt. Type 1 is no ones fault. It’s something that happened to you in the lottery of life, but I’m proud of how we continue to adapt when the type 1 wheel of fortune throws us a different hand every day. No two days are the same with your illness, there is no pattern. It’s learning to be calm in the midst of long periods of chaos, it’s learning to accept that whilst we strive every day for the best blood glucose control, somedays we do everything right and the beast that is type 1 will refuse to be tamed. I’m not sure we ever could have imagined what our family has been through but sitting here now I feel very grateful for our little unit, the lessons we have learned and the strength we have found in each other.
I’m also very grateful for your Grandma and Grandad. I’ve needed a lot of help adapting to this new way of life. I haven’t always known what help I’ve needed and sometimes I don’t always have the emotional bandwidth to recognize when I need help the most. They have been in the wings at all times poised and ready to support me so I can look after you and Noah the best I’m able. Metaphorically, when I’ve been unable to walk, they have carried me and when it’s been dark, they’ve help me switch on the light. They have seen me through this last year with total dedication to being there for anything I have needed and have never asked for anything in return. I’ll never be able to express my gratitude enough for all they have done.
Each day you and Noah do something, say something or look at me like pure light and I feel like I’ve swallowed the sun with how much I love you both. Other days, I’m exhausted, weary, short tempered and shouty and I find my new role as a full time pancreas really tough. I hope you remember the days I brought the sunshine and maybe when you are older we can laugh about some of the things that didn’t go to plan.
Alongside moving house and starting a new school, you took on your first major acting role as a Christmas pudding in the Christmas concert at playgroup, I spent 15 minutes sitting in the audience crying tears of happiness, you spent 15 minutes sitting on the stage looking like you hated every second of it. You learned to ride a bike and to count to 20. You started singing songs, it’s a joy to hear you sing, I could listen to it all day. You create fascinating imaginary worlds about traffic jams, car races and fire rescue’s. You have a real mischievous streak and whilst sometimes I shouldn’t, I find myself actively encouraging it because it’s so much fun. I’m sure that parenting decision will come back to bite me in the arse one day. You have learned how to wear lots of different diabetic technology and have really big needles enter your skin, you are beginning to understand medical language that is far beyond your years. You can do an accomplished seat drop on the trampoline, you can navigate any soft play with ease and the bigger and faster the slide, the quicker you are first in line to slide it. Your favourite things to eat are cocktail sausages, you love an egg, preferably the dippy kind, you have really taken against peas for some reason and you tell me daily how much you don’t like them. The seaside is one of your favourite places, it’s good job cause in a few months we are moving there. You love an adventure, whether that be a walk in the woods, a climb up a mountain, a trip to the park or a treasure hunt in the back garden. You like to watch music videos, probably not age appropriate ones but it sometimes means I can have a hot cup of tea whilst you and Noah dance around like loons. You love to splash in muddy puddles, you love to be naked or ‘nuded’ as you call it. Your favourite song to dance to at the moment is Black Betty by Ram Jam, I’ll thank your Dad for that one. You really enjoy painting and colouring, your style is somewhat abstract but I like it. Your favourite thing in the world to do is play with your toy cars and you know every make, model and colour that you own. You also love building train sets, kicking footballs, dance parties, and wrestling with your Daddy. The amazing games he plays with you makes you incredibly happy and you have a certain happy laughter that’s reserved only for him.
In some ways, although I can’t say I’m grateful for type 1 yet, I can recognize that something positive has come out of this diagnosis and for many months now we have just been focusing on spending time together. We have slowed down, not doing anything in particular and not planning all our free time and weekends away. I can honestly say in these moments when we are sitting in our garden, bouncing on the trampoline, walking on the beach or watching our iPads I’ve never felt happiness like it.
Going back to that moment in the hospital with you, I was really scared, I can’t imagine how scared you must have felt. When something so life changing happens you have to wait for the dust to settle to understand how to move forward. In terms of progress I can say a little experience has replaced a little fear and a little hope has replaced the diagnosis dread. There are still some huge unknowns and there is much more to learn but one thing is for certain at this moment in time, you are going to carry this illness for the rest of your life, so we can either wallow in the weight of it or we can try our best to make it a good one. I know which side I’m going to be on and when you have good days and bad days, we’ll will be right in the trenches with you whenever you need us.
Me and your dad have been arguing lots, we both feel very down. It’s cause we both care about you and Noah so much, it’s also because parts of us feel sad, angry, scared and helpless that we can’t take this from you. It’s a form of grief and I’m not sure after your diagnosis we ever really stopped to take in the magnitude of what’s happened. We just threw ourselves into getting on with things and a year later we are both somewhat of an emotional shipwreck. It’s something we are both working on, as cheesy as this sounds, we are the masters of our own happiness and I look forward to a time we can look back and see just how amazingly we were doing under the circumstances because some days it’s hard to hold onto that viewpoint. Sitting here today things are brighter than they were a year ago, I believe even brighter days are to come.
Me and your dad love each very much and it’s important to mention we also laugh lots together too. There isn’t a day goes by where we don’t make each other smile. We have a lot more wrinkles, we are fatter, we look and feel pretty weathered most of the time and I honestly think we deserve the world record for the two parents surviving on as little sleep as possible, whilst running a business, selling/renting and building a house with two kids under four. In reality that is just a fraction of what plates we have spinning, writing it down makes me realise we have definitely lost our minds and I hope future me, your dad, Joe and Noah will have a lot less on our plates when the times comes for you to read this and we can look back and giggle at how ridiculous life got for a while. It also makes me realise the bigger plan to live a more moderate life couldn’t be a better one. It’s just going to take some time for us to let the plates down gently.
BUT we are loving, learning, laughing, arguing, crying, screaming, hoping, passively aggressively, teeth grittingly surviving and living our life in all its imperfect glory with our two wonderful children and in all honesty Joe, other than a cure for you, I wouldn’t change a damn thing. Well, maybe just the ability to get full nights sleep. An overriding feeling that always prevails after any arguments or any difficult days is that I wouldn’t want to be navigating this life with anyone else other than your Dad. I’m glad we are on each other’s team.
Let’s use today, 1st May 2020 as a way of paying our respects to Pete The Pancreas and the short time he was with us. You and Noah are thriving and there is lots to be grateful for. Now to celebrate all we have achieved and just how lucky we are that we are here together.
All my love,