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A special kind of mum

June 14, 2017

 

I reached out to Nat to share her story with me, because from the moment I found her story, I was in awe.  I knew my readers would be too.

This amazing woman not only walks through life with an absolute smile on her face, she also lifts up other families who are struggle and continues to find happiness in the littlest of moments.  

She is a true gem, a super mum and a wonderful soul - enjoy.

Tell us a bit about your family –

 

We are a tribe of 4 consisting of myself – Mauro, Grace (6) and Chiara (4).

We are all lovers of nature, the outdoors and all things organic.

I met Mauro studying Naturopathy, it was literally love at first sight.

He woo’d me with Italian cooking, coffee and his grounded spirit.

 

When you fell pregnant with Chiara, aside from the normal ‘mum fears’ we all have, was there anything that led you to believe that she wouldn’t be perfectly healthy like Grace?

 

On the 20 week scan, I was told they couldn’t find the babies right foot and to come back a week later to try again. That was a long week let me tell you, the second scan confirmed there was a right foot (phew!) but it was a clubfoot. I was told it was a common and treatable condition and not to worry!

 

Instead, I worried and I googled! Not a good mix.

 

I did see a lot of neurological issues linked to clubfeet, my mind silently spun into the ‘what if’s’, but I mostly kept the worry at bay and assumed I would have a perfectly healthy baby, clubfoot and all!

 

Once you found out things weren’t quite right, how did you work through it? And how do you continue to get through each day?

 

To be honest not very well! I had already been in and out of RCH for months for Chiara’s intense clubfoot treatment and she wasn’t sleeping or travelling well. Super stressed out mum.

 

I went undercover for a while, I couldn’t get through many conversations without tears. It was so difficult to have a ‘normal’ conversation after spending hours with a neurologist or medical specialist. I found it really hard to ‘assimilate’ back to day-to-day life. My mind was full to the max of medical information and I was desperate for solutions, that all my waking hours were spent on researching, learning, understanding, digesting the onslaught of soooo much information.

 

Even though intuitively I knew something ‘wasn’t right’, nothing could have prepared me for the severity of her diagnosis and what they meant for her life and ours.

 

There wasn’t much time to grieve though. 

 

Once a child is diagnosed there is a lot to action straight away, sometimes urgent medical tests like EEG to see if your child is experiencing life threatening seizures. Then along comes an Early Intervention Team, who help you to navigate the system. They link you to physiotherapists, occupational therapists, speech pathologists and more.

 

In terms of coping with all the new information, hospital appointments, therapies, funding, equipment etc, my past work experience seemed to provide some helpful tools. I spent over 10 years working in a fast-paced corporate environment.

 

Being a yoga teacher and student provided a wealth of experience in how to manage self-care, and I also travelled solo for a year.. lots of life lessons prepared me in a way for this life stage.

 

As well as incredibly supportive husband, couldn’t do it without him.

 

 

But apart from that, I think it all come down to love.

 

Love gets us through what feels like the impossible.

 

 

 

Chiara’s treatment started almost straight away and hasn’t slowed down, what has been the hardest part?

 

The loss of what felt like a ‘normal’ life before hand. I missed those motherhood experiences of going to the park, instead of hospital. Or celebrating those ‘first’ milestones of a first word ‘mama or papa’ or a first step etc.

 

The hardest part has been the physical exhaustion and lack of sleep. It’s pretty full on and constant, so for me I learnt the hard way and my health was showing signs I needed to slow down. Once I implemented a ‘non-negotiable’ focus on my self-care and what I could manage, life shifted in such positive ways.

 

Secondly, accepting and surrendering that this is the card you have been dealt, it’s a tug of war sometimes. Personally my deep spiritual work has almost been just as challenging as the physical side – they both require mental fortitude.

 

What’s involved in a typical day?

 

It’s so varied, it really depends on what is going on with Chiara and her needs at the time.

 

Our days involve a lot of lifting and moving her from room to room, in and out of the house etc.

 

Aside from the physical hands on care, there is seriously a mountain of paper work to address with a child with serious medical conditions. From doctors referrals, to funding options, to communicating with a huge range of medical and therapists contacts. I’m kind of like her P.A!

 

Every single task such as bathing, dressing, feeding, communicating, lifting, travelling requires a lot of extra time and effort. She is unable to feed herself, or move on her own so we are like extensions of her mind and body in the way.. helping her to get out into the world..

 

Our days become nights, as we also need to provide a lot of care over the course of a night. Help to move limbs and reposition her body, or hold her when she is in pain and administer medications etc.

 

Our days all in all, are all about helping Chiara reach her full potential and enjoy life as much as possible like any other toddler. That involves meeting all her needs and providing more for her, she attends a pre-kinder class and loves all her friends and carers/educators there.

 

I’d love to know how Grace handled everything at the start – and how she continues to.

 

It still astounds me to this day, the level of wisdom, acceptance and strength Grace has held, almost effortlessly.

Children are the biggest teachers of living in the moment. Grace’s responses are always directly linked to what is happening in the moment.

 

If Chiara is sick, it worries her.

 

If Chiara is smiling, she laughs with her.

 

When I’m fighting back tears during an equipment trial (when the reality of a standing frame or wheelchair feels too much for me to bare), I only have to look over to Grace to see her sense of adventure and free spirit to know all will be ok and just breathe mama.

 

Grace and I do a lot of meditations and visualisations together, she was in my womb when I was studying yoga teacher training so she’s got all the positive qualities of a natural yogini!

 

She really is true to her name, she brings grace.

 

 

 

Also, I imagine there would have been immense strain on your relationship with Mauro at times – any advice for other couples in a similar situation?

 

Big time!

 

It’s really difficult to give advice as so many marriages/partnerships vary. For some they need to hold on and ride the waves together, for others they need to let go.

 

Personally for Mauro and I, we both feel that we could not do this without the other. We say our complimentary opposite’s come together perfectly for this journey.

 

We both bring such different things to the special needs parenting journey and I think if you can honour that, and let each other approach it in their own way… you can create a perfect whole.

 

Forgiveness. Patience. Communication. Love…. In equal measures! And perhaps in our case, more sleep!

 

Do you ever get resentful that your life has changed so dramatically?

 

Yes, these feelings seem to come mostly when I’m exhausted or when I have to see my child suffer. I feel resentful that life has dealt her with that card.

 

Yet, on the flipside our life has changed and expanded in ways I never thought possible. I feel incredibly blessed to be walking along side Mauro, Grace and Chiara, hospitals and all!

 

Tell us more about Miracle Mama – how did it start? How has it helped? And what are your plans for it for the future.

 

It all started with a simple blog I created, Chiara’s Journey, a while after Chiara was diagnosed. It helped me track all of her appointments, therapies and progress, not to mention my thoughts…

 

My writing began to reach to mums from around the world through email, blogging, articles via HuffPost, Facebook etc.

 

If I wasn’t up most nights researching treatments to help my daughter, I was up writing to mums and holding a space for them to share their worries, grief, joy and everything in between.

 

I was lucky to be blessed with some amazing mums who helped me after Chiara was diagnosed, so in a way I wanted to pay it forward and help other mums too.

 

My emails, FB inboxes and Instagram messenger are full of conversations with mums who reached out to me, after reading a blog post that they connected with, or helped them in some way.

 

Last year I studied to become a life coach, to further support mums who are raising children with additional needs.

 

So Miracle Mama is like an extension of my first blog, but with wings to expand and help reach more mums in need. There is something so incredibly healing to come together as women, and in our case, women of special needs children and support one another. 

 

Miracle Mama was specifically created for mums who are raising little miracles fighting big battles.

 

There is a space dedicated for coaching, where I focus a lot on honouring wellness and self-care. I recently trained through the Beautiful You Coaching Academy to further support mums, outside of yoga, meditation and writing.

 

Another part of the site which I love, is The Miracle Project, an online blog (soon to be podcast) where I interview mums about their journey. Uniting our stories helps on so many levels, I am grateful I am special needs mum in these times. The world wide web has helped so many families connect, learn and adapt.

 

There is loads more planned for miracle mama, membership site, heart-centered collaborations, retreats, monthly meeting circles and so much more…

 

And it was all created because of a beautiful little girl named Chiara, with a name that means ‘light’. In a sense, its one of the core missions of miracle mama.. to shine a light forward for mums when they need it most.

To learn more about Miracle Mama, head to-

website // Instagram // facebook


To follow Chiara's Journey, check out -

 

website// Instagram // facebook

 

 

Photos supplied by Natalie and are courtesy of Emma Wise Photography.

 

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