We're only 16 months in, but it feels like a lifetime of Type 1 Diabetes already! If you come to think of it, Harrison has lived with Type 1 Diabetes longer than he has lived without it. Diagnosed at 11 months old, we have navigated many frustrations with brave faces and worried hearts - from fussy eating after bolusing (injecting for meals to cover the impending blood sugar spike), to our first hypoglycaemic seizure (from his blood sugars dropping too low), to teething sugar spikes, to fighting tummy bugs in hospital on glucose drips!
Often normal toddler ailments, like fussy eating and teething, even a little tummy bug, are shrugged off by parents of non-diabetic children as normal, but as I am sure most Type 1 parents would agree - throw small things like these in the mix of already unpredictable sugar levels and you're set for amplified nights of no sleep, extra bolusing, extra finger pricks, extra midnight snacking - the works! The game is never over, there is never a winner, it's all about balance.
I often get asked in passing "How's Harrison?", "How are you guys coping?" - these are easy enough to answer although I often feel my answer is always the same because in passing you can't really get down to the nitty gritty of how it all is actually going! I give everyone the benefit of the doubt, that they really want to know - the truth of the matter is that Type 1 Diabetes is our new normal so for me to say it's all going well, I do in fact mean it is. It's hard, but it's our life now, we have no choice. Suck it up and LIVE!
From the outside looking in, a normal day in our life involves a host of life-saving decisions and actions that parents of children without Type 1 Diabetes might not necessarily have to worry about. These aren't really questions that can be answered in passing so the short and sweet of it is that we are making it work and we are surviving.
Since Harrison was born we have never reflected on our lives as much as we do now, and especially so after Harrison was diagnosed. Paired with life events of losing friends long before their time we have realised that our lives are meant to be lived! We have made some promises to ourselves and one of them is every chance we get we are going camping. We love camping and always dreamed we would bring our children up with the same love for the outdoors and for camping. Diabetes MUST NOT change dreams like these and I think all too often it does for some.
I am not one of those people who happens to be extra positive and happy 24/7. Every glass in the world shattered for us when we heard the words "Your son is Type 1 Diabetic" and for a long time after we heard them we struggled to process this news. We cried. A lot. We blamed ourselves. We blamed others. We sat in silence a lot. We hugged Harrison every chance we got. We gave him plenty of kisses. We basically smothered him! Grief overcame us but at some point we had to force ourselves to find something positive! We took so much solace from the fact that our son fought with all his might and the entire time that he fought he wore his cheerful smile. He was weak, couldn't walk, barely babbled, but he smiled for us all the time!
Life has to carry on! You're going to adapt. It is going to carry on! It will be different. It will be harder. But you will be able to do it!
I have had some friends remark that they could never give their child an injection... perhaps one or two of you feel the same. I can assure you that when faced with a lifetime of injections or the possibility of a life without your child you will man up and step up to the plate! In the beginning they're uncomfortable but after a few weeks they go unnoticed. We opted for 4mm needles on our penfills for Harrison and before ever giving him his first injections ourselves we injected each other to feel what he would feel - in truth we barely felt it.
In the beginning you are bombarded with so much information. Every minute spent in hospital is torture because this world you have been thrown into is so foreign. You're continually being fed information, and then tested on what you learn. Emotionally there is absolutely nobody there for you but yourselves. There's a psychologist in the mix of doctors who oversee you but they are only their to check your mental state before giving the "OK" for you to leave the hospital and deal with this on your own. Emotionally there is a big fat void.
You need to find strength and courage from a place you don't know that you have! 16 months in and sometimes the same applies! With these recollections of the "early days", my strongest recommendation to new T1D families would be to sign up to the community of parents who have been through what you are going through. Type One Warrior is one such place - we encourage you to reach out to us via Facebook messenger or even email. We are preparing a Type One Warrior lifeline and information pack that will help you through these early days. Pop us an email and let us know what you're going through! There is also a fantastic Facebook group called "Kids Powered by Insulin" that is filled with parents ready to impart their words of encouragement when your child is first diagnosed!