This is the third and final part of this feature interview series with Stacey Kale about the incredible journey she is on as a medical mum to beautiful twin girls, Amelia and Grace.
If you have read the first and seconds parts, fabulous, read on.
HOW HAS MASON ENJOYED BECOMING A BIG BROTHER? HOW MUCH AWARENESS DO YOU THINK HE HAS OF THE GIRLS HEALTH NEEDS?
Mason was 16 months old when the girls were born and he didn’t really get to see them until they were 10 weeks old and they were out of the incubators and in open cots. They came home around 4 months old with tanks and tubes and he was still a baby himself really at 20 months. He didn’t seem too concerned about the tanks or tubes - it was all he knew of babies.
Mostly he has enjoyed becoming a big brother. He likes to share his toys on his terms and is enjoying that the girls follow him around and are starting to do as he says. He always talks about his babies, he is very proud of them.
He has always been a lot more gentle with Grace, the few times he has lashed out at her, he has got very very upset. We try to parent gently so don’t yell or scold him. It’s like a sixth-sense, he knows she isn’t as strong or something.
Now with the girls moving, (Amelia walking and Grace crawling) we have to remind him to go a bit slower if he wants Grace to keep up and to watch her balance. We haven’t talked to him about her being sick, we will have to one day, but for now he is blissfully unaware.
IS IT A REAL JUGGLE TO ENSURE MASON IS GETTING THE TIME HE NEEDS WITH YOU, OR THAT SOMETHING THAT WORKS WELL FOR YOUR FAMILY?
I think all families face this juggle if you have more than one child. Having two babies to ‘compete’ with is challenging for him at times. Initially, I would focus on having 12 really positive physical and emotional connections with him within the first hour of being up. Cuddles, kisses, high fives, compliments. I would find he wouldn’t be seeking attachment if it was given freely and often. It would set us up for a good day. I was lucky Simon or Mum were around to be there for the girls so I could do this consistently.
I worry he has some anxieties about being apart from me. Getting him off to daycare can be a struggle some days as he wants to play at home with the girls and I. I lay with him every night to get to sleep and each night he cries out for me or finds his way to my bed. Which is fine. He is obviously needing comfort and security and I am happy to give that to him as long as he needs it, even though it can be tiring at times, I am lucky to be his safe place.
My parents and father in law are great at giving him some extra special time, and my Mum supports me so I can too.
We need to try to find ways for Simon to have some more quality one on one time with him. We are looking at doing up a little ‘roster’ to work on having one on one time each with a different child. This will also help the girls get used to some time without each other which will be helpful in the future.
I ABSOLUTELY LOVE YOUR INSTAGRAM ACCOUNT. IT HAS BEEN REALLY INTERESTING TO SEE THE GIRLS GROW, AND HEARING UPDATES ON HOW THEIR HEALTH IS IMPROVING.
WHAT INSPIRED YOU TO START DOCUMENTING THIS JOURNEY?
It’s funny as when Mason was born, things didn’t quite go to plan and I didn’t announce his birth for 2 weeks, I was already overdue so people were starting to get worried. I just wanted him all to myself for a while.
When the girls came so early and with so much uncertainty, I felt I needed to share they were here in case something went wrong. So people knew them and knew how much that mattered. We didn’t allow visitors in NICU mainly because we lived so far away and we had so much to process. My in laws came once on day 5 and my own family only a handful of times more. I found it really hard dealing with others reactions and emotions so I choose not to put myself in that situation.
I didn’t want to bombard my Facebook page with hospital photos so I turned to my Instagram account and shared updates there and I kept a blog which I shared with family and friends so they could keep up to date with the girls progress. That way I could focus on the girls and update everyone at once.
Instagram has a huge community of prem and medically fragile parents. Following them gave me hope. It connected me to a community of mums who knew what it felt like to sit in a hospital chair and touch your babies through incubator doors.
Now I get lots of messages from mums who said our journey inspired them to keep positive through NICU which is amazing. Simon often says that sharing our journey has been a positive out of a really hard situation. I have made some wonderful friends, raised awareness and funds for some amazing charities and had lots of support and answers when I haven’t known where else to look. He is quite a private person and Instagram totally baffles him, but as a Mum who is stuck in the hospital or at home, it can often be your only social communication which is really important.
IN TERMS OF THE GIRLS HEALTH, ARE THERE ANY BIG HURDLES THAT YOU KNOW OF IN THEIR FUTURE?
Both girls will grow out of their chronic lung disease around 7, as the lungs regenerate which is great. Amelia currently is on a steroid inhaler and we will wait to see if this is needed in the future but it is really helping her lungs for now.
We work with two different Occupational Therapists for Grace and one for Amelia, for gross motor skills and helping Grace with her mild right-side hemiplegia (cerebral palsy). A lot of their development is a wait and see which can be hard. We do what we can to help strengthen and develop the connections in the brain to do what the body needs it too.
Grace will need to have the hole in her ventricle closed, we are hoping this can be a keyhole surgery and is expected to be done around the age of 4 or 5 years. They expect her next open heart surgery to be around 9 or 10 years to replace her pulmonary valve and she will need this replaced throughout her life. This terrifies me but is just one of those things.
Premature babies have an increased risk of ADHD, anxiety, and autism so that is something to keep in mind as they grow.
We know Grace is likely to tire more with her heart, we don’t know what she will be physically capable of doing, which is harder having Amelia to ‘compare’ too. All we can do is love, nurture, and support them. What will be will be and we will face it.
WHAT ADVICE DO YOU HAVE FOR OTHER MUMS WHO ARE FACING THE CHALLENGE OF RAISING CHILDREN WITH HEALTH ISSUES?
Be kind to yourself and your family. Cut yourselves some slack. Lower the expectations you put on the housework and non-essential things.
Find your village of support whatever that looks like.
Don’t be afraid to set boundaries to protect your family's health, well-being, and time together. Be clear and direct. If people have an issue with your keeping your children safe and yourselves happy, they aren’t the right people for this stage of your journey.
Ask for help when needed and accept it, we are made to do hard things but you don’t have to do everything alone.
Focus on what your children can do instead of what they can’t.
It’s ok to grieve for the path you thought life was going to be, but don’t let it steal your joy from the beauty of the life you have.
IF YOU COULD OFFER ALL MOTHERS ONE PIECE OF ADVICE, WHAT WOULD IT BE?
Enjoy the ordinary. I know it can be so hard day in and day out, the routines, the lack of sleep but one day we will long for these days. Pause and drink it all in. Trust your gut, do what feels right for you and your family. Enjoy your babies. Life is really precious and we never know what is around the corner. Take your time and enjoy x
If you’d like to follow Stacey and her gorgeous family on Instagram you can find them at @thekaletribe
If you would like to read more about Grace and Amelia’s NICU journey you can find Stacey's own blog here.
First published in 2019