I actually remember the very first time I read Natalie’s blog when a friend shared this post, and then we connected online after both having done the IAHP course in Melbourne. I’m pretty sure we’re kindred spirits. While I know motherhood has been challenging and ridiculously busy for her, Natalie seems to emanate a certain zen. In her gracious and generous way, she has created a beautiful online sanctuary for mothers to connect, recharge and support each other, and so I invited Natalie to share the journey that led her to becoming a ‘Miracle Mama’.
Before my daughter’s diagnosis, I used to think miracles were a rare phenomenon. But over the years of my journey that transformed me from a Mother into a Special Needs Mother, I soon realised that the real miracle was how so many families move through this journey, evolving and expanding into their new life.
Prior to commencing the transformative journey, life was flowing well. Our first daughter, Grace, was three, I was pregnant with my second child and teaching Yoga at a local studio close to home.
It wasn’t until one of the routine pregnancy scans that fear started to kick in. They couldn’t find the baby’s right foot, I needed to return a week later to check again.
They did find the right foot on the second scan, phew! However, I was told the baby had a “deformity” (wish they didn’t have to use those kind words!) known as Talipes, or ‘clubfoot’. I was told not to worry and that it was a common and treatable condition. Did I worry? Yep, of course I did.
I did what most other Mothers do and ‘googled’ the condition! I kept noticing the link between clubfeet and serious neurological conditions, I tried to ignore but you know the whole rabbit hole thing! It’s just a treatable clubfoot right? What else could go wrong?
Chiara was born two weeks early and I must admit seeing her clubfoot was a little confronting. The treatment commenced at The Royal Children’s Hospital when she was only 10 days old.
They cast her tiny foot at 10 days old, then bi-weekly for months in the attempt to correct her foot position. This meant many hospital trips with my newborn and long unsettled nights with a heavy cast on her leg, unable to bath her properly and a little baby who was becoming increasingly unsettled and upset around the clock.
(Screaming baby + peak hour Melbourne traffic + long hospital waiting room times + very little sleep/rest + every.single.week = stressed Mum)
Then I started to feel like something else was going on with Chiara. I noticed the super human strength in her body. How could a little baby be so strong? It took three people to cast her foot, as we literally had to hold her down to cast her and she and I both shed many tears. (I later learnt that her super-human strength was due to the strong increased muscle tone, from her Quadriplegic Cerebral Palsy).
Around this time, I was so overwhelmed with all the hospital appointments and sleepless nights, loved ones just thought I needed some rest. Yet intuitively I knew something wasn’t right, Chiara wasn’t breastfeeding well and I felt like I was losing a grip on this whole ‘motherhood’ experience.
I also noticed that Chiara started to move in strange ways. Yet nobody else could see these bizarre movements, only I could see it. Chiara already had a smaller than average sized head, so the chart readings were already beginning to raise concern.
Next thing I knew we were booked for a brain MRI at the RCH.
Two days later, our life changed in an instant. Her MRI results were in and doctors revealed she had a severe brain injury. At this stage the cause was a possible stroke she had in utero. Stroke in utero? I didn’t even know that was possible.
We were told Chiara would not be able to walk, talk and would require many operations, interventions and need 24/7 care for the rest of her life. They spoke of a shorter life expectancy and many secondary concerns associated with her diagnosis. Microcephaly, Bilateral Perisylvian Polymicrogyria, Quadraplegic Cerebral Palsy and Global Developmental Delay. The odds were well and truly stacked up against her. (I had never experienced a grief like I did on the day of Chiara’s diagnosis and subsequently over the years that followed).
Then next few months were a blur, EEG tests for seizures, early intervention programs and also reviewing medical letters – that would leave me sobbing on the kitchen floor. It comes at you from all angles. If you are a special needs Mother, you will know exactly what I’m talking about.
Life catapulted us into a reality that was so fast-paced and all I could do was try to keep my head above water.
Aside from the grief of knowing my child would be faced with challenges every hour of every day, I also worried about how on earth I would manage. Physically, emotionally and spiritually. This kind of parenting requires an endurance of heart and mind, especially as each new morsel of information sets in at different stages along the way, as our baby grows and we watch the ‘normal’ milestones pass us by. In the beginning, we process our baby not being able to roll or then sit, and then later wonder whether she will ever speak or stand, and so it goes on.
As a Mother, you are continually having to recalibrate and every stage of the journey. It’s painful and it hurts, but the love for your child seriously keeps you going through the dark days. Then the micro-milestones serve as anchors of hope and celebration to keep you moving towards the light on the good days.
I began writing a blog mostly to try and keep a track of the therapies we were doing. We’ve been on a mission to help Chiara to reach her highest potential, taking us on adventures around the world to access latest neurological therapies. As well as requiring many many hours of commitment in terms of working with Chiara on these programs, we have also needed to put significant effort into fundraising to make it all happen.
Personally, my self care went out the window after Chiara was diagnosed. I barely had time to keep up with my own health and I learnt the hard way too many times! We have to endure many seasons along the special needs journey, we can’t afford to burn out. I think as women, we need to shelve the guilt that we aren’t a good enough Mother, and make time to look after ourselves with the same love and care we provide our special needs child and family.
As a passionate advocate for health and wellbeing, special needs and self-care, I wanted to create something to hep serve the special needs sisterhood, who helped me find my own footing in the post-diagnosis life. And so I have created a website offering soulful support for special needs Mamas.
Miracle Mama is a online sanctuary for Mums who have a child with a disability or life changing diagnosis. Offering soulful support via a compassionate community, holistic coaching, yoga and meditation, downloadable free resources and so much more.
Mothers need support. But the whole ‘it takes a village’ takes on a whole new meaning with mums who are raising special needs kids. You need people who are travelling on the same path as you and can extend a hand back to lift you up and shine a light forward – to keep you supported, understood and cared for along the way.
These are the reasons that I created Miracle Mama. Because I was in the same place and it was dark, overwhelming and I struggled to find people who understood what I was going through. I needed a community who could light the way forward, inspiring hope and encouragement.
“As a mother you are supposed to sacrifice, tolerate, be very patient, be very thoughtful of others, and understand all the pros and cons of any situation. As a woman you must give nothing; you have to protect yourself first; and you need not tolerate any nonsense. Woman must be able to ascertain which is the correct relationship – woman or mother, sword or shield.” ~ Yogi Bhajan
I think we as Special Needs Mothers need both sword and shield – and in equal measures!
Chiara is now four and doing well, defying the odds in her own unique way. It blows me away the strength of spirit that our children hold, to me this always seems like a constant miracle. I’m also so grateful for the love and support from my husband Mauro, I couldn’t do it without him. Grace and Chiara have both us on such a transformative and mysterious path, we have no idea what’s around the corner, but we’re holding on for the ride!
Natalie is a Yoga Teacher, Holistic Coach, Writer and Speaker about the Special Needs and Self Care connection. Natalie is married to Mauro and a proud mama to her two beautiful daughters, Grace and Chiara, and their family is based in Melbourne. Her youngest daughter Chiara suffered a stroke and has been left with a serious brain injury, which has altered the the life of her entire family.
Natalie follows Osho’s mantra: “Be realistic: Plan for a miracle!”