On our 8 year anniversary to this day ..
Support & care are ABSOLUTELY imperative!
We are blessed to have you .. Thank you.
Here is St. Clare’s story .. ✖️🖤✖️
In 2009 I started my nursing degree and was absolutely certain I would go on to be a midwife. I juggled full time University, late night shifts at a bar and as much night time babysitting as I could squeeze in so I could study and still earn some money. In 2010 I was babysitting regularly for one of my favourite little West Leederville families. They were just a few minutes from my parent’s place, where I was living at the time, and I absolutely adored the kids. One night, the kids mum Kate, told me a devastating story about what had happened to her dear friends little girl. As the months went on, she kept me updated and told me all about the first fundraiser they were having, she showed me place cards and table settings and was very excited for them. Within a few weeks Kate told me that her friends were looking for some help with their little girl, they were keen for someone who had some sort of medical/nursing training and Kate posed the question to me…would I consider meeting them? Without hesitation I said yes and had Kate pass on my number. Kirst and I spoke on the phone and organised to meet several times, each time we were due to catch up Saba ended up very unwell or in hospital. After months and many rescheduled dates, I finally laid eyes on Miss Saba Button on the 10th of March 2011, just a month shy of the 1 year anniversary of her Brain Injury. Little did I know…this was the first day of my new career.
I was in my final year of my nursing degree when I started working with Saba. I was doing just a day a week/fortnight, depending on Saba’s health and depending on my Uni timetable. In the beginning, Kirst would just ask me to sit and cuddle Saba while she did jobs around the house or spent time with Cooper. As time went on, I learnt Saba’s regular Medications and Naso-Gastric feeds, I learnt stretching and physio, I learnt the difference between a ‘fright’ and a tonic startle, I learnt assistive play and read plenty of stories with Saba and I learnt that this little kiddo could never be left alone, not for one second…but the most valuable thing I learnt in the first few months with the Buttons was that if Saba could have been healed with love… she would have been healed a million times over and a million times again.
Fast forward to 2013, I was finishing up my Grad Programme at King Edward Memorial Hospital as a Registered Nurse in the Neonatal Intensive Care Unit. I was doing 4 days a week at the hospital and 2 days a week with Saba. I was working my ass off and I loved every minute of it. As you come to the end of your graduate year, you start applying for jobs or if you’ve made a good impression you are offered a job. I was asked to stay on in the NICU, but my heart just wasn’t in it. I couldn’t stand the thought of leaving Saba and I just knew we had so much more to do together. I thought about it for a few weeks, talked it through with my parents and finally built up the courage to ask Mick and Kirst if they would like me to work full time with Saba and their family… SAY WHAT? I think they nearly fell of their chairs. So began my new job as the Private Nurse of little miss Saba Button!
Stepping up from 2 days to full time was amazing, I was now so much more involved in every aspect of Saba’s care. This made a huge difference in the changes I saw in Saba during therapy and I was learning her mannerisms so I could know how she was feeling, if she was in pain, having a seizure or healthy and happy! I loved attending appointments with Saba and meeting her therapists and doctors… I just wanted to know Saba inside out.
The years seemed to fly by in a haze of amazing highs and some pretty devastating lows, but as Saba got older the highs lasted longer and the lows seemed to try to creep up but we would knock them back down. When I say “we” I mean the well-oiled machine that is Mick, Kirst, Saba & St. Clare. Through hospital appointments, medications, oxygen, suction, wound dressings, intensives, hospital appointments, emergencies, therapy, feeding, surgery, equipment, seizure management, travel, assisted communication, ordering consumables, fundraisers, school, wheelchairs, PMH and PCH…oh and Cooper & Bowie…we always seem to manage each day as it comes. With Saba by our side showing her continuous resilience and strength, nothing is ever too hard. We have therapy days, school days and days off. Some days are perfect and others not so much…we have had to cancel things…A LOT, but that’s okay, we’ll try again tomorrow and the next day and the next day. For Saba, we’d do anything.
Saba is the reason I get out of bed every day and she will continue to be for many years to come. She makes my heart sing when she smiles at me, even when she laughs at my singing. She is hilarious and cheeky and so bloody clever. Did you know her favourite colour is orange? And that she loves to write? Have a chat to her next time you see her, she looks ‘up’ for YES and ‘side to side’ for NO… she uses a fancy thing called a PODD on her windows tablet and has perfect hearing so don’t be shy, she has a lot to say.
Did I think I’d still be with Saba this many years later, maybe? Did I know I’d grow to love not only Saba but also her Family and friends like they were my own, sure? What I didn’t know was that this little girl would change my entire perspective on life. Saba has taught me patience, respect, resilience and a love like no other… all this time I thought I was guiding her, little did I know…she has been doing the same to me all along.
My name is Clare and I’m Saba’s Nurse.
On our 8 year anniversary to this day ..