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  • Rebecca Conci


As I started my journey to live a more intentional life, I quickly realised that to make the most of my days I needed to start the day with what felt like a small step in front. When times and seasons provide chaos around me, there are things that I can control to help make life a little simpler. If I do these steps it reduces the chaos and creates a net for me to catch more time. I read once that a schedule is a mock up of order, fulfilling this order creates a sense of peace, which with chronically ill children, is exactly what you need. I spend around 40- 50 mins each night, and it's worth every minute.

After all, ‘how we spend our days, is how we live our lives.’ A. Dillard


The first trigger to my night time routine is when the kids are ready for bed. As my children get older the night time routine has me overseeing, rather than helping. When they are well, they can be more independent, which is lovely to watch, but one thing I still do with them every night is read. I love listening to their stories, reading with, and reading to my girls. This is such a simple way to spend time with them and be present with them, with no distractions. They love it as much as I do.

As seasons have changed, so have the books I read to and with them. My youngest suffers from post-traumatic stress after watching the many times her sisters have been taken away in ambulances. I pick up very easily when she starts to get worried, as this affects her sleep and bed time routine immediately. In these times I read books such as The Invisible String written by Patrice Karst, or Go Away, Mr Worrythoughts written by Nicky Johnston. I also love and encourage my girls to use their imagination, and read a lot of different types of books that embrace this. Enid Blyton is still a favourite in our household. I have also come across books that encourage calm, confidence and creativity. They are a meditation series and start with your child closing their eyes. They then imagine they are a part of the story. The message behind the stories help with anxiety, finding identity, and leaving positive affirmations.


Now the more mundane tasks start. But after reading to the girls I always feel re-energised, and know that if I do the next few things, tomorrow night will be filled with creativity and adventure again. The stacking and unstacking of the dishwasher happens several times during the day, but it is vital of a nightime. If I wake to dishes everywhere it's not a great way for me to start the day. We don’t always manage to get all the dishes done and unstacked before I go to bed, but for the most part we get all the dishes in the dishwasher, and if need be I unstack in the morning.


Again a seemingly simple task, but our kitchen bench tends to be the dumping point for our whole family. It is a large kitchen bench, and can be deceptive as to how much can go on it. Although I do tend to watch carefully what ends up on it, I refer to this bench as my mind. If the bench is cluttered, so is my mind. I am a very visual person, and get distracted by clutter, so I try to make sure the bench remains clutter free at all times, and this positively reflects the way I feel. Paperwork filled, things put into their places, and a wipe down.


Chronically ill children come with medication. With medication come syringes, medicines cups and all feeding supplies to wash. Once the main kitchen area is done, I move to our pantry which is also our med room. Here is where the girls' medications are ready to distribute. You can read more about the way I manage and organise the medications here. We administer over 420 medications per week. Most are tablets now, but we used to do mainly liquids. When you have to administer more liquids there will be more to wash, and these can very quickly get out of control. Depending on the feeding regimen, if you need to peg or tube feed your child, you may need to wash this more than once a day.

I wash all the syringes, medicine cups, and feeding equipment, then replace the paper towel where my children take their medication from, so it is clean and fresh for the morning. I double check medication supplies for the morning and the next day, and replace the tablet cases if needed.


My tidying tends to focus more on the main living area, and my own zone. Our home is quite large and divided into the kids bedrooms with a playroom near, and the kitchen, living zone in the middle, then the parents bedroom, and our TV room. I don’t like mess, or things left on the floor, but don't generally worry about the whole house this time of the night. I find if the kitchen and living zones are tidy in the morning I can stay present with the kids, and enjoy our mornings together. So these are the areas I focus on. As the kids are now older we don’t have as many toys spilling over into these areas, so it doesn’t take long to get this done.


I have tried to cut back on the amount that goes into our bins weekly. It has not gone onto my yearly goal as yet, but I know it will in the future. Some weeks are better than others, but still every night my husband takes the rubbish out so there is no rubbish in the morning to deal with, and so the morning is a fresh start.


With chronically ill children come hundreds of specialist appointments and therapy sessions. I have a whiteboard in my pantry that I use for these appointments, I also write any other appointments on our calendar, also in the pantry, so I check them easily. Usually I remember what is coming up, but there are times of overwhelm, when my brain refuses to hold anything. The checking of the calendar has become a habit in my night time routine, so I can prepare whatever I need for the next day.


I always have a meal plan. I love meal planning, as it takes the overload of stress and organising of weekly family meals off my plate (pardon the pun) and into a system that flows smoothly. Since I also buy in bulk at times, or make double of some meals, I always check what meal is planned for the next day. I have a written plan on the fridge door so everyone can read what is planned, and this helps to avoid the ‘what's for dinner’ questions. Looking at the menu the night before allows me to take out any food from the freezer if needed to have it thawed in time for the next night.


I love pen and paper. I find it very therapeutic. Every day I have a list of tasks that I enjoy ticking off when done. It is a habit formed out of necessity to free space in my mind. Once a year I buy a beautiful diary, and everyday I write at least three tasks that take priority. The lists can range from spending time with my children, to exercising, but usually they are tasks to help me stay on top of the home, and our busy schedule. Some days my list can fill a whole page, other days I find three, but the list helps me stay focussed during the day and gives me a sense of achievement knowing I have done them.


I always allow myself some time before bed. I reflect on all the wonderful moments, and take the time to notice how I am feeling. It’s not an easy ride raising chronically ill children, and some days are definitely harder than others. Whether you are waiting for test results, or are noticing a change, it can weigh heavily on your shoulders. So I always recognise what I am grateful for. And although my days can be filled with to-do lists, and tasks that need to be completed, they are also filled with everyday moments that I have learnt not to take for granted. I take this quiet time to reflect on those moments, and to look for opportunities to improve and grow from what I did today, to create an even better tomorrow.

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