ONE LEARNING FROM COVID 19 THAT WILL CHANGE THE WAY WE LIVE OUR LIVES FOREVER - PART TWO
And life changing it was.
The next few steps happened in the space of only a few weeks.
We actually enjoyed isolation. Having had previously many years experience of trying to keep the girls away from bugs we had gone from a family who enjoyed all the experiences a typical family would enjoy to a family who slowly spent more and more time at home, so we could avoid anything dangerous going around that would see the girls back in hospital. The amazing life saving gift of an organ transplant also comes with it immune suppression to keep the organ functioning. This is a fine balance on its own, and one we are extremely grateful for. After all if we couldn’t have these organs I would have one daughter, instead of the three I have.
But with immune suppression comes the inability to fight bugs.
When we realised the schools weren’t all we initially thought they were, we started to question life, and all it has to offer. We loved our home, our friends, our town, our land, the canola fields, our ocean and the great ocean road. In the years that we had lived in this home and in this community we had built a home, and life. Our youngest didn’t know anywhere else. But there was always something we felt was missing.
In October 2021 Jenna was once again taken into hospital. I remember it vividly. She thought she was having a hypoglycaemic episode, (low blood sugar) when we checked her sugars and found she was very high. I took her to the pharmacy for advice, and more blood glucose strips. Having had steroid induced diabetes post transplant we were already a little
bit familiar with what steroid induced diabetes looked like. The pharmacist said to take her straight to hospital. This was not the first time I had heard this news, and the resistance was immediate. I was thinking... but I was meeting friends in the bush for a play, and a chat, and since we were recently out of isolation, a trip back into hospital, and not the bush, meant being back in isolation in a very small room once again.
But of course I took her straight in. After Jason and I organised her sisters I started the quick pack for a possible
lengthy admission, and got her straight to the hospital. On the road we past the beautiful open fields that surrounded us. As I admired the landscape I wondered just how sick she was this time, and what it could possibly mean. The knock on effect of every visit is massive. Physically, mentally, financially, emotionally, and not just for Jenna and I, but also for her dad, and her two sisters who have to say goodbye to her once again, and our family is split apart. The routine that we work to build disappears in an instant and replaced with heartache, fear, pain, division, questions, and longing to be a family unit once again.
Whilst driving I asked myself a really simple question… Were we living the best possible life we could, and giving our girls their best life? Were we giving them a life that we could be sure we had no regrets when something bad were to happen, and the very simple answer for me was… no. It certainly wasn’t the home we lived in, or the community we enjoyed, but it was our day to day. Where we lived in rural Victoria it was windy and cold for the majority of the year. The pool that we had built and installed for the girls to enjoy sat for the most part of the year, as we admired it from the kitchen window, but was too cold to swim in. The beautiful land we owned was often too soggy and wet to go out and kick a ball on, and the wind too crisp to get on our bikes, and enjoy a family ride. We gave the girls a wonderful life, but knew there was always a part of us that were drawn to warmer weather. Knowing that our futures and the girls futures would be filled with eventual heartbreak, and challenges beyond what we wanted to think about- we didn’t have time to wait, to live the life we dreamt about.
Jennifer was admitted in October 2020, we stayed in for roughly one week. We left with a new diagnosis of the endocrinology side of her pancreas that had failed. This is a little complex, but for most kids this is type 1 diabetes, but for Jenna, the picture looked more like a child with Cystic Fibrosis, without the exocrine side failing, however the treatment was the same. Already on so many medications, now the new regime of insulin injections/ finger pricks, machines attached to her body, the endless tipping into hypoglycaemia, and hyperglycaemia, counting carbs and an injection every time she wanted to eat.
We knew we wanted to give them their best life- as every parent does. We wanted to design a life we loved every single day. So the conversations started….
Five weeks later we had packed up a 40 square home, two car garage, massive shed and an acre of land, had our home on the market, and had hit the road in our vintage van heading north to the warmer coastline.
Where we now live…
If we remembered everyday that we could lose someone at any moment, we would love them fiercely and freely, and without fear- not because there is nothing to lose, but because everything can always be lost…