This is the second part of Stacey Kale's incredible journey as a medical mum to critically ill twin girls, Amelia and Grace.
If you have read the first part, fabulous, read on.
If you haven’t, then I recommend you do. You can find chapter one here.
A LOT OF FAMILIES WOULD REALLY STRUGGLE TO COPE WITH SUCH SICK BABIES. WHAT KIND OF SUPPORT DID YOU/DO YOU HAVE IN PLACE, AND IS THIS ENOUGH?
My family are amazing. I am lucky my parents are retired and Mum was able to be in Auckland and help care for Mason so we could still do what we needed to do for the girls, and have time each Friday night to reconnect and talk over what had been happening at home and hospital. I used to give all the information to my sister for her to share with family and a few close friends so I wasn’t being inundated with messages. She also would visit Grace in SCBU to bath her and bottle/tube feed her in the week Amelia was home, despite having her own children to care for. My family helped care for Mason while Simon worked or when he couldn’t come up to Auckland.
My parents are an amazing support. They help with daycare runs for Mason. Mum comes down most afternoons so I can cook dinner. They take Mason if we find ourselves in hospital with the girls. The past few months they even take all the kids for a night every so often so we can catch up on sleep and jobs around the house.
We connected with Heart Kids when the girls were 7 weeks old, I wish I had known about them sooner. They offered practical support like food vouchers and Diane would give Amelia some extra love when we needed to be in PICU with Grace. Our local branch purchased a portable oxygen bag for Grace to make getting outside (even in our yard) easier and they recently arranged a group of Lions volunteers to help sort our neglected garden.
I met some lovely Mums in NICU and PICU who I have kept in contact with, having people in a similar position can be helpful for support and understanding.
We had access to social workers, family liaison nurses and psychologists. To be honest, I didn’t use them much at the time because I was so busy with the cares and routine of NICU.
When we came home we had home care nurses visit for the first year regularly to check on the girls and replenish medical supplies.
As a multiple parent with another child under 5, you are entitled to 240 hours of home help in the first year, I used my Mum for this. I would like to see changes that mean more help is available to those caring for kids with medical needs as it can be very draining and is harder than looking after healthy babies. It can be quite hard not knowing what you need or what services are available. There is no one size fits all and everything is so case dependent, which I appreciate, but the time it takes to fight for access to services or support can be really taxing on a parent when they already have so many ‘balls in the air’ to juggle.
THE DEMAND ON YOUR TIME AND YOUR EMOTIONS MUST STILL BE SIGNIFICANT, EVEN THOUGH (TO THE UNAWARE OBSERVER) THE GIRLS SEEM TO BE WELL NOW.
HAVE YOU STRUGGLED WITH YOUR MENTAL HEALTH AT ALL THROUGHOUT THIS JOURNEY, AND WHAT KIND OF THINGS DO YOU DO, OR HAVE YOU DONE TO MAKE SURE YOUR OWN NEEDS ARE BEING MET?
When the girls were first born and I was still on the maternity ward I requested to speak with the maternal mental health team. I have had family who went through Postnatal Depression so was very aware of it and worried that with all of the extra challenges we were faced with that I was at a higher risk. They deemed at the time I was coping and feeling ‘normal’ feelings for the situation.
My husband and I have always been really good at communicating our needs and feelings on the journey. I reach out to my Mum and Sister when I am really struggling, even if it is to just offload on the hard days. I mostly get frustrated around access to care. I have a friend who is a social worker and have called her a few times for support and to get things rolling.
I also keep things in perspective as much as I can. Mothering three little ones who are so dependent on you for every single thing is a small season in life. It can be hard and overwhelming during it, but they won’t need you to carry them, dress them, be there all forever. I think this time around, I am a lot more grateful for the mundane, ordinary, repetitive tasks. I know of too many parents who said goodbye to their babies who don’t get this chance. I change my mindset on the ‘difficult’ parts, I am so lucky I get to hold them at night if they need me, so lucky to be able to pick them up whenever they/I need.
I try to take some time out to fill my own cup up but am sure all mums agree, it is finding those moments to do it daily which is the struggle. For me eating well is really important for my health and mental well-being, taking my time hanging out the washing in the sun, enjoying my favourite cup of tea, an early night. I would love to make time for more exercise and fresh air as that always makes me feel better. I used to really enjoy my walk up the hill to NICU, fresh air and exercise does wonders for the soul.
You will find the third and final chapter of Stacey's journey here.
First published in 2019.