Being newly diagnosed - Lily's story.

It was just another busy week juggling kids, work and family life.

Rhys and Lily had finished doing two weeks of school swimming. Lil looked a little tired, she was eating anything that wasn’t nailed down and we assumed she was having a growth spurt.  During the early hours of Saturday morning Lil came into our room upset and had started vomiting. I spent the night in her room with her and she kept vomiting and complaining of a sore stomach. I noticed that even with the vomiting she kept drinking copious amounts of water. As I lay there with her, I started to wonder if she had been getting up more during the night to go the toilet too... In the morning I helped her get undressed for a shower and was totally shocked to see how much weight she had lost... she was skin and bone…. The penny suddenly dropped, and I thought oh dear god, I think this is diabetes...

I went into Brendan to tell him that I was making an appointment at the doctors that morning and what I thought was going on. I think he thought I’d been googling too much!!

The GP at the medical clinic examined Lil and was thinking along the lines of a virus. I explained that I was a nurse and was worried it might be type 1 as Lil had the classic symptoms, increased thirst, urination and weight loss. The GP listened and did a finger prick... Her hands shook and with tears in her eyes she told me I was right… Lil’s level was 28.9. Ill never forget that sinking feeling when she showed me the numbers displayed… I asked her to stay with Lil while I rang Brendan. I don’t even know what I said, but I remember crumpling against a wall outside the doctor’s office and sobbing into the phone...

I tried very hard to pull myself together to go back in. The doctor told me she had contacted Barwon Health, that they were expecting us. I was to go straight there and then she whispered over lily’s head- this will be quicker than waiting for an ambulance...  I tilted the seat back for Lil as she was looking so very unwell at this stage. She closed her eyes and looked so pale & drowsy on the drive in. My heart was racing, I was beyond anxious at this stage and I think I got every damn red light in Geelong.

The staff at triage did a quick finger prick and keytone check ( keytones were 6.6) we were taken straight through to resus… Oh god the staff were so amazing and took expert care of our girl. She had 2 IV lines put in and the ED doctor told Lil she was braver than most adults! She was hooked up to  cardiac monitors and they took blood gases every 5 minute or so.  I knew she was unwell, but they did a very good job of not stressing us out by knowing how unwell.

Brendan and poor Rhys came in, think Rhys was incredibly shocked by it all, how she looked, the monitors and infusions. He thought she was going to die, the doctors took the time to explain to him that she was going to be ok and make him understand what was going on.  Bren was scared too, we all were.

I remember it was chaotic... we had an emergency consultant, pediatrician and I think someone from intensive care talking to us and there was Lils little voice saying ‘Mum’’,  and a bit louder -  ‘Mum’’, I turned and said ‘what  Bub?’ and she said ‘I just need you to hug me’’ She must have been so scared…..

We stayed in ED until she was stable enough to be transferred to the kids’ ward -HW3.  Lil again had expert care and we began the enormous task of getting our heads around the diagnosis of Type 1 and learning what we needed to know to keep Lil safe and manage this chronic illness day in, day out.   Brendan took home this enormous manual from the Royal Children’s hospital and started reading it word for word- we were a team working together to understand it all and we both took it in turn to give Lil her injections.  I was trying so hard to keep it together during the day but as I lay in the bed beside her at night when she slept that’s when I cried…  I kept thinking over and over – I don’t want this for her, I don’t want this for her…

Lil was and still is utterly amazing at how she has coped with all that has been thrown at her over the last 4 months. Within 24 hours she was starting to do her own finger pricks, she never made a fuss about having the novorapid injections although she dreaded the nightly Lantus, she always said it hurt the most.    She would ask questions and talk to the nurses, doctors and visitors but at night when it was just the two if us she would break down and admit how hard it was, that it hurts and that she just wanted to be ‘normal’ again.  Although I died a little inside when I could see her hurting so much I knew she had to let it out.

The pediatric diabetes educators are angels in disguise...  All of them. They told us about a seminar that was happening on the Wednesday after Lil was diagnosed with a speaker from America, a diabetes educator and family therapist – Joe Solowiejczyk.  Larger than life, loveable Joe! Well I think we were meant to meet Joe. His talk and his advice and support have been pivotal in how we have coped with this life changing experience.  I thought I was handling things fairly well until Joe started talking and then I think Brendan and I spent the entire evening with big, fat, tears rushing down our faces... He got it!  He knew how we felt before we even knew!! He just got it…  He met us afterwards – Lil included , he gave her a great big hug and some of his advice got us through the hardest times that we’ve had so far. One thing he impressed upon us as parents was that getting your kids to have their insulin is not negotiable... Lil heard Joe say this loud and clear. A few weeks down the track and it was time for lils Lantus. Now the novorapid that she had to have 3 times during the day was no issue – independently gave it to herself.  But the Lantus was another issue. Anyway, so it was time for Lantus before bed and we had it ready. I was just about to inject it and  Lil was squeezing both Brendan and Rhys’ hands.  She pulled her leg away just as I was about to inject and sobbed, begged and pleaded with us not to do it. ‘Please, no, I can’t, it hurts, please don’t make me…’    It was horrible...

Brendan scooped her up and took her to her room and they spoke about what Joe had said – insulin is not negotiable.  Lily typed out and email to Joe, came back down to the lounge room and had her Lantus injection.

Lily is the only child at her school that has type 1. I took a month off work and initially went to school with her to assist with blood glucose checks and injections each day. The teachers and school were incredibly supportive and attended education sessions as soon as they were able. Bit by bit I stepped back and Lil became more independent and her teachers supervised where needed.  There’s a fine balance in diabetes management you must be careful not to be blaze’ about how life threatening it can be, but you don’t want to overreact constantly either. You must feel confident that the teachers are able to manage it in your absence but call when they need.

Having a child with diabetes is all too consuming and unrelenting. Especially initially, it was seriously all we could think about and sometimes still is. Checking Lily’s blood glucose level every night was incredibly hard to adjust to. That broken sleep does not make life easy...   Its incredibly hard to give equal time to our children when so much of our focus is on keeping Lily well.  Poor Rhys…. He was so worried about Lily, but he felt the shift in our family dynamics.  When you are constantly tired, sad and stressed its hard to be  a good parent!

 I felt like I had this pit of dread in my stomach for at least a month afterwards, this overwhelming sadness and grief for the loss of a healthy child was hard to get through.  I was the parent that now needed a school plan, health alerts, equipment to go with her everywhere she goes and always making sure we had things on hand at an instant to treat Hypos.. As a nurse I unfortunately don’t often see many examples of adults with type 1 living long, healthy lives.  We see the mismanaged, unhealthy ones with multiple complications. I think this has been one of the hardest things for me – not reacting to the highs… It scares the breath out of me if I’m totally honest.

It can be kind of lonely too as I have discovered there are great misconceptions and even many people who just don’t think it’s a big deal... Oh, she’ll be right- bit of insulin and off she goes… It really is an invisible illness.  Our beautiful girl looks healthy – thank goodness but what people don’t see is the daily work that goes into keeping her healthy EVERY day.   So we’ve found some people in our lives (our families & friends) to be so incredibly wonderful and supportive and also many that just don’t get it. 

We have been very fortunate to have found the type 1 foundation and have had great support and met other families who know exactly how we feel . Some of the most comforting words in the English language are ‘me too’’

Lilys paediatric educators have been so incredible, we’d have been lost without them!  The ongoing support has been faultless, there is someone I can contact 24 hours a day for advice but to be honest the nurses – the paed diabetes educators offer by far the greatest support and advice.

So here we are 4 months down the track. Still learning, still adjusting but continuing to live life like we always have.  Type 1 hasn’t stopped Lil being the fun loving 9-year-old that she is, she continues to play basketball and do all the same things that her friends do.   The only difference is I’ve realised she is the strongest person I know.