In this blog, I’m delighted to introduce you to Hayley Thiele, mum, step mum and Founder of She Can Thrive. Hayley was thrown a curve ball in her motherhood journey and is now using her experiences to help other mums who are craving connection with someone who understands what they are going through. I invited Hayley to share her story and tell us about her exciting and important work…
Sometimes, even when we are surrounded by family and friends, we feel alone, because it feels like no one really understands what we are going through. What made you feel isolated and alone as a mother, Hayley?
I was born an extrovert. I love people and feeling connected. Having my friends and family around me lights me up. I have always felt huge empathy for women, mothers in particular, who don’t have a support network and it makes me feel incredibly sad that 54% of women identify as friendless since becoming a mum.
I was fortunate enough to connect with an AMAZING group of first time mums when my eldest daughter Maggie was born. Our big babies are now five and to this day we support one another (sometimes with wine away from the small humans). Maggie was only 16 months old when our Aria entered the world. Having two babies so close together had its challenges and there were times I was bored, but not lonely. The final piece of our puzzle joined us in November 2018. Pippa Alee was perfect, however shortly after she was born our world started to change. Pippa had a severe tongue tie, feeding difficulties, snored like a train, had an awful wet-sounding cough and struggled to put on weight even after I switched to formula. I was in complete denial that there was something “wrong” with her. I told all the medical professionals they were over-reacting. She was small but happy. “Sick” babies are miserable right? I was wrong.
When Pippa was four months old, I found myself in a hospital ward, four hours away from any resemblance of a support network, being told my baby had a rare genetic condition called 2q13 microdeletion. She was given that god awful label “failure to thrive”, had been aspirating milk into her lungs, needed oxygen for chronic sleep apnea and was showing early signs of developmental delays. Due to so little being known about her genetic condition, we were also told to expect that she may grow up to have any number of cognitive disabilities… or she might not. Hand on heart, I had never felt more alone in my life.
My beautiful support network was amazing, however, my circumstances had changed. My life had been flipped on its head and I needed to broaden my village. I so desperately wanted to talk to women who had been through this before. I needed someone to confide in about what I can now see as completely irrational fears, however at the time, they felt very real. I didn’t want to post in a Facebook group because I was scared of being judged and having mums with severely disabled children scoff at my situation because on the disability scale of things, we are very lucky. In hindsight, I know this was completely irrational.
This feeling of almost suffocating loneliness is the reason I started the connection service (formerly called Mummy Matcher). A service that connects mum’s whose motherhood experience has been thrown an unexpected curveball, so they can talk to someone who just gets it. I want that mum sitting at home, in hospital, in her car or in the waiting room to never feel as alone as I felt. I want to bring women together who are seeking connection and I feel privileged to do what I do. It also helps that I have almost 10 years experience of working with victims of crime and predominantly survivors of domestic violence.
What challenges did you face as a mum with a medically complex daughter?
I was grateful that Pippa wasn’t my first baby as I already had the knowledge from my first two girls that every little human is their own person with their own trajectory of when and how they do things. In saying this, I honestly thought the hardest things I would have to navigate with my third baby were sleep deprivation and googling “how much caffeine is safe for breastfed babies”. How wrong I was!
There are a number of practical challenges of having a medically complex child. We live four hours away from the children’s hospital and Pippa’s specialists, which is a bloody expensive exercise. Physically carrying all the medical equipment like oxygen bottles, feeding pumps as well as a nappy bag when you left the house. Aspects of your life you’ve never thought twice about like baby wearing whilst you cook dinner (not a good idea cooking on a gas stove-top with a bottle of oxygen strapped to your back). Having to calculate how many hours of oxygen you get to a tank when you leave the house for longer than a few hours. Having your toddlers (and sometimes adults #guilty) accidentally trip on the feeding pump tube and/or oxygen hose attached to the baby. I could go on and on!
Social challenges can be tricky. The looks of pity from strangers can sometimes feel like a slap in the face as you forget your baby looks different to others because to you, they are just…them. The comments from beautiful and well meaning people such as “we are only given what we can handle” or one of my favourites “special kids are only given to special people” would drive me insane because there were days where I didn’t feel like I could handle it, like I was failing not only Pippa but my older girls and my husband. Then there were certain people in our circle who would embellish Pippa’s condition and her special features for their own sympathy from others, which would drive me bonkers.
The emotional challenges take their toll and there are times even now where I talk about those early days and unexpectedly burst into tears. You need to go through the process of reconciling the cards you have been dealt and the life you had imagined. When we are home, in our bubble, Pippa is just Pippa. Our hilarious, crazy, gizmo laughing little girl. We see her for who she is and to us she is perfect. Every now and then, when you venture out, you can’t help but compare her to other kids her age. It hurts and something that has helped me immensely is allowing myself to feel the feels, but not take up residency there. I bring myself back to the present moment and know that whatever happens, we will deal with it, just like we have with everything else up to this point.
What changed for you when made a connection with a stranger (another mum) who had experienced something similar?
After I was able to broaden my circle and talk to other mums in similar situations it felt like I had come home. This spurred me to start my business, because when life throws us these unexpected curveballs we just need a little help to broaden our village. During those early days, the depths of despair are deep, however, mostly because what we are dealing with is so foreign to our “normal”.
I try to avoid talking to people I don’t really know about any upcoming procedures or hospital admissions as there are times I can physically feel the mood change and well meaning comments like “oh you poor things”, “there is no way I could do what you do” then take over the conversation. However, when I talk to other medical mums we have conversations about how we are going to spend those precious minutes of alone time when your child is under general anesthetic having a simple procedure like having a PICC line put in. I do need to acknowledge that this is my experience and I know there are mummies out there with some VERY sick little people and this is not their experience.
Pippa has shown me what a narrow, naive and siloed perspective of life I used to have. To be perfectly frank, I am now living what I once would have considered my worst nightmare. Having a child with a disability has always been portrayed as earth shattering and that these families are “doomed” to a life of sorrow and hardship however the reality is… it’s just not!
What would you recommend to mums who feel isolated and alone?
Humans are not built to do this thing called life alone. We are biologically engineered to seek connection. You can look at any sociological study and it clearly demonstrates that in order for us to be at our peak vitality, social connection is as important as food and water!
I know that what you are facing right now, feels like you are the only person on this earth to have been dealt a situation like this. Your immediate support circle are still as vital as ever but chances are that there is no one in their you can really talk about your new world with. You now have the opportunity to grow your village and include other women who have faced a similar situation to yours.
You can access a service such as the She Can Thrive Connection Service, or be that person who says hello in the waiting room whether it be in a medical, school or even a beauty therapist setting. Use your kids as a buffer and a way to start a conversation, something as simple “oh my son/daughter does that too”. And I know it doesn’t feel like it, but if you have felt/thought it, I would bet my bottom dollar that there is another mummy out there who has felt something similar.
Believe it or not, as I write this, Miss Pippa is in hospital for another “tune up” which just means another course of IV antibiotics. This means I am four hours away from home. COVID restrictions mean we aren’t allowed visitors and trying to keep a grumpy 19 month old entertained in a teeny tiny room is about as much fun as a mammogram. However, guess how many mums of kids who are medically complex or have a disability I have spoken to in the last 24 hours, either in person or virtually? Nine. Nine mummies, majority of whom I have never met in person but we have common ground. We GET IT in a way that our friends, family and sometimes spouses just can’t. It is because I reached out, sometimes stalked and initiated conversation that I now can call these amazing women my friends. Friends I would never have made had I not been thrown my unexpected life curveball.
This admission has been so different as she is a toddler now. She wants to explore her world, wishes everyone would just leave her alone and boy am I copping the brunt of her frustrations. So, as I sit here in hospital, physically alone again, I am tired, I am over it but I am not lonely and you don’t have to be either Mumma x
About Hayley Thiele
Hayley Thiele is the mum of three girls aged five, four and 19 months as well as a step-mother to her husband’s 12 year old daughter. When she isn’t drinking coffee, champagne, working or dragging her little family up a hill somewhere in the beautiful Flinders Ranges she is working on her business, She Can Thrive.