*Disclaimer: I want to start off by saying we know we are lucky that our little girl does not have cancer or another terminal illness, that she wasn’t snatched away or killed in a car accident. We are very grateful for what we have. But we also have the right to grieve. Each person can only deal with the situation they are given. This post wasn’t written to start some sort of pity competition between parents about who has the sickest kid. It is a chance for me to express my emotions about our situation and grieve about what we have lost. Every person has the right the grieve about their own situation – no matter how big or small.
I have done a lot of crying in the past couple of weeks. Mainly silent sobbing in the dark while I sat in an arm chair beside my little girl as she slept beneath crisp white sheets and hospital blankets. Mostly I cried for her, the loss of a simple and regular childhood, the loss of her vibrant and carefree nature, the loss of that innocent “nothing-can-hurt-me” light in her eyes.
My carefree baby girl
But I also cried a lot for myself. Of all the things that had been so simple; school, work, eating out at restaurants, sleeping… that was probably the worst, when I realised I will never truly sleep again. I have cried because I love my job and I worry that I may not be able to give it my all any more. I have cried because the dreams that I thought were almost in reach now seem very, very far away again. And I have cried because I am scared of losing my baby girl in the depth of the night while I sleep through my alarm.
On Thursday the 21st of November at 6:30pm my six year old daughter was officially diagnosed with type 1 diabetes. It has taken near on 3 weeks for me to write this down as I was, and to some extent still am, in a state of denial. There was no dramatic scene that played out before our diagnoses, no inevitable family history that set the scene. There was nothing except one annoying little habit, I thought. Endless trips to the bathroom that kept us up at night. Which led to a grumpy Facebook post, some fortunate coincidences and some very helpful advice of friends and family.
I remember the exact moment our lives began to turn, when I picked up my phone and read the text from my husband, “Miss A blood sugars are a little high, perhaps having that chocolate frog before we went into the doctor was a bad idea”. I remember grumbling at my phone thinking this was going to mean extra testing – perhaps something like that fasting test you do when you are pregnant, never thinking there was actually anything wrong. I rang expecting to him to say, “she’s fine, doctor just wants to make sure, it’s just a little abnormal.” But what he said was that her levels were so high that they were on their way to the Royal Children’s Hospital in Brisbane. I think even then I held onto some hope that we would get there and they would say that it was possible that it was just a virus or something temporary.
The first time I lost it was when I picked my son up from after school care and had to tell him we were on our way to the hospital because they thought his sister had diabetes. By the time I shuffled through the snails-pace traffic that special numbness that gets you through difficult situations had gratefully set in. As I came in the door of the emergency ward there was my gorgeous girl, eyes bright and shining getting a cannula inserted with barely a blink. It was at that moment that I saw what an incredible little thing she was and I knew if anyone could cope with this it was my brave baby girl. – me I wasn’t so sure about
There were a flurry of doctors and nurses, many questions, many hours spent sitting trying to distract both children from the screams and crying of other children being brought in to emergency in much more heartbreaking and desperate conditions. Finally a nurse came and spoke to me and asked if I would go with her to get something. She told me that we would be doing the first of Miss A insulin injections and what to expect. She told me we could either tell her what was happening or just surprise her with it. She told me about how she had seen other children react and to expect that we would have to hold her down to inject her – if not now then at some point in her lifetime… her lifetime – yep that hit hard. I have never believed in lying to my kids so we were upfront with her and she was so brave. She watched the whole thing and didn’t even flinch. There were stickers and much praise and a wheelchair ride up to the ward.
And so began our week on the ward. A week of finger pricking every 2 hrs or so and insulin injections 4 times a day. That night as I sat in my green leather recliner surrounded by sick children watching my baby sleep I cried. Silent, hot tears streamed down my face, I thought they would never stop. I refused to make a sound because I knew across the hall, in the next bed was probably a parent who was dealing with a child that was never going to leave this hospital or would leave only to return days, weeks, or months later maybe recovering, maybe not. I was so acutely aware of our blessings that our daughter was safe and well, that she was being treated in the best place and that we would walk out of this place with a whole healthy child. But at the same time I was slowly beginning to process how things were going to change – forever.
When the nurse came in to do her finger prick in the middle of the night, I wept anew. I had just gotten to a point where I was usually getting an unbroken nights sleep more often than not – that realisation that I would never again sleep through the night again just about broke my heart. Knowing that even when we eventually got a night away I would still wake and worry that whoever was looking after her had slept through their alarm, knowing that even when she grew up and left home I would still lay awake at night and pray that she woke up the night morning and hadn’t fallen into a coma in her sleep.
The morning came and with it our new routine. I was led by the dad in the bed next door. He was an old hat at this having been here for two and a half weeks already.
- Wake with the sun at around 5am – depending on how much sleep you managed to get the night before (sometimes I was so over tossing and turning that getting up was a relief, other times it seemed I had only nodded off at 4am and I tried to ‘sleep in’ until 6am.
- Fold up my blankets and if I was lucky enough fold away the fold out sofa that I had scored for the night (we rotated it around the parents who were in our ward)
- Go get a cup of tea and a piece of toast from the parents lounge. You couldn’t take hot beverages out of the room so it was often scoffed down in case Miss A woke.
- I would try and read while I waited for her to wake up but usually I would end up just sitting, watching and over thinking things.
- When Miss A woke we would do finger pricks, insulin and breakfast before showering and getting dressed for the day. I would take my time and do her hair, something we never did at home. We were always too busy.
- I would wait for my hubby or someone else to arrive before I hurried off to have my shower hoping a doctor wouldn’t come while I was gone.
What I wasn’t expecting was how I would react to the whole situation. The first day I left her in the hospital to go home and get some clothes I think I had my first panic attack. I’m not really sure having never had a panic attack before but it is how I imagine one must feel. My heart was racing and I felt like I was suffocating, all I could think about was getting back there. To say I became a completely unreasonable control freak (at least in front of my husband and close family) is probably an understatement.
Late on Friday afternoon we attended our first education session where we learnt about how to recognise and treat a hypo – a difficult concept when we had never seen our daughter experience one before. We were equipped with our first blood glucose monitor, a bottle of Lucozade, and a ton of information to read. This meant we could go walking around the hospital and get out of the ward which was a great relief to our little girl who didn’t look or feel sick. The Wonder Factory became our second home – such an amazing place with fabulous volunteers.
That night an angel appeared in the shape of an old school friend of mine. Her son had been diagnosed at 17mths and it was her that had sent me a PM via Facebook on Wednesday night to encourage me to take Miss A to the doctors. She brought in a bad of goodies including her son’s favourite hypo treatments; a can of fanta, jellybeans, fruit jelly. Things for Miss A to do in hospital and a block of chocolate that became my dinner for the next 5 nights, but most of all she and her dad – who also has diabetes sat and talked to me when I know they must have been tired and she had her own children to look after. It was so nice just to talk to someone who had been doing this for years and was still sane and could tell me it would be OK.
The saddest day was Monday. It was Monday that my little girl turned to me while we were having her shower and said, “When I go home, do I still have to have all these needles”. This was the moment I had been dreading. How to explain to a six year old that their carefree life of eating, playing, learning, laughing and sleeping was going to be forever punctuated by endless finger pricks and injections… That day in that tiny shower cubicle was the closest I ever came to crying in front of her.
That was the first time I heard her say a phrase that is now a common part of our daily dialogue. “I wish I didn’t have diabetes”. I certainly use stronger phrases when out of earshot of the kidlets. That day I watched the light go out of her eyes. She was lethargic, she was sad. She didn’t want to do anything, I guess that is what a depressed six year old looks like.
Tuesday she started asking if she could do her fingerpricks herself. I had a lump in my throat the first time I heard her ask if she could do it. I was so proud of her. We spent the rest of the morning learning to inject plastic bellies and then they handed over the needles to us and we had to practice on our daughter.
Tuesday night we were given a leave pass to go to the kids school concert. Our first taste of experiencing this new world on our own. My little girl was so scared of leaving the hospital – have to say I was pretty freaked out myself. It’s like that day when you leave the hospital with your first child and you are sitting in the car with this person that you are now entirely responsible for. We were now her pancreas, and can I just say I had no idea what a complex job being a pancreas actually is.
Wednesday they let us out. We gathered our supplies, loaded up our many bags and set out on our new journey. Since then I have discovered that living with diabetes is very much like having a newborn. Getting out of the house takes twice as long, you can’t leave without a ton of stuff you never had to have before including a blood glucose monitor, insulin pen, needles, sharps container, food… some days it seems the list is endless.
Most days I am left wondering if we will ever get back to a point that feels like normal. Where we can go out and not worry about what we are going to eat and when. A friend of mine gave me the advice to not make everything about diabetes, which is hard when Miss A’s life depends on it. But in the last week there have been moments when I can see the light at the end of the tunnel. An hour or two has passed without me thinking about diabetes, blood sugars and insulin.
We are so blessed to have such supportive family and friends. Some who know what day to day life with diabetes is like and others who are just there for us to lean on. Thank you for your advice, companionship and just being a shoulder to cry on, especially to Renay, Fiona, and Caroline and your children for letting Miss A know she is not alone, to our parents and family who have been such a great support, everyone who came and visited Miss A while she was in hospital so she didn’t go stir crazy, to my work colleges for the balloon bouquet and just being awesome and to our IRL and online friends, new and old who have listened to my whinging and put up with my inability to think or talk about very little other than diabetes lately.