My name is Lana. I am a 30-something year old, chocoholic, self-published author who lives in Sydney. My husband Chris and I are both New Zealanders, and are proud parents to Zachary (5) and Thomas (4). In my previous life, before kids, I was super organised, worked in finance and travelled the world for fun. These days, being organised feels like a major achievement. I still love adventuring; one of my favourite places to be is at our little family caravan, with access to Sydney’s stunning south coast beaches. Alicia Keys music is like a super power to me.
I’ve taken my time getting this interview back to you, Natalie. It would be easy to cite the demands of motherhood or my writing projects as the reason for this, but I have decided to be more honest.
You see, I have always grappled with where we fit as a family. We seem to exist in this sort of in-between space, where we are not quite what you might think of as a typical healthy family, yet, the extra challenges our boys have been given are not as life changing as so many of the other families you are connected with. Despite both of our boys’ treatment being on-going, I imagine their diagnoses would quite simply be considered secondary for many of your dedicated special needs families. This often causes me to feel like a fraud amongst the special needs community, and when I am approached to be involved in things like your Miracle Mama Project.
I once wrote that Zach’s clubfoot treatment was a bit like having “temporary residence in a more challenging world. We get to come and go as Zach’s resistance and compliance to wearing his bracing fluctuates, and it’s more than likely we will be deported in a couple of years’ time”, (http://lanamayes.com/10-benefits-to-these-bloody-bootsnbar/).
At that stage I imagined his treatment would end when he was 4 or 5 years old, as it does for many children, and that we would then merge into a far more typical parenting experience. Alas, this has not quite been the case. At nearly 6 years old Zach is now looking down the barrel of his second relapse. In addition, his little brother has a partial duplication of chromosome 21, and has been diagnosed with a neurological disorder affecting the motor planning of his speech. Still, the outwards signs of these challenges are now fairly subtle, and from an outside vantage point the boys mostly go about everyday life just like many other children their age.
I feel the need to issue a disclaimer that I am aware of the gap between our experience and many more medically complex scenarios. However, at the heart of it all, we are bonded by so many of the same processes and emotions, and I often strongly relate to you and the words of your community, Natalie. It is an absolute honour to be invited to share my experience.
Welcome beautiful Lana, Zach & Tommy
Natalie: How did your special needs journey begin? (What was going through your heart & mind during this time).
Lana: I guess you could say our journey began at my 18 week morphology scan when I was pregnant with Zach, where we found out our first son was going to arrive with a congenital deformity. I remember feeling disbelief and confusion, and having an ever increasing number of questions. Initially the diagnosis felt like an abrupt serving of unwanted uncertainty.
The beginning of our second son’s story is a little more difficult to pin point. He was an unusually quiet baby. In fact, he was virtually silent for the first couple of years of his life – not even any ‘oohing’ or ‘ahhing’. I remember going to multiple check up’s, and being asked if I was concerned about his complete lack of speech. I wasn’t; he seemed to have a fairly laid back nature, and to be honest I enjoyed the quiet! Eventually we began speech therapy, where he made little progress. It felt like more of a slow burn to diagnosis this time. The gradual unravelling of clues, and waiting as talking milestone after talking milestone passed unachieved.
In both cases I busied myself seeking information and other parents who had similar stories. For me, there is so much power in surrounding myself with those who can relate. I’ve found that shared experiences seem to catapult friendships very quickly into highly trusted and valued relationships.
Natalie: What are the names of the conditions that Zach & Tommy have? Can you share with us a little more about it?
Lana: Our eldest son, Zach, arrived with ‘Congenital Talipes Equinovarus Deformority’, AKA Clubfoot. His right foot was severe; turned in at the ankle so that the sole of his foot was looking up his leg. It was rigid, essentially stuck in that position. Without treatment it would have been painful, if not impossible, for him to walk. We began specialised serial casting to ‘unwind’ his foot when he was just 5 days old. That was followed by full time wear (23 hours/day) of what is known as ‘Boots’n’Bar’ – two shoes held together by a fixed metal bar, much like a mini-snowboard. Although, that makes it sound fun, when it was often extremely arduous. Gradually over the next 4 and a bit years, we reduced his time in bracing down to 16, then 14, then 12 hours in every 24 hour period. He recently received a secondary diagnosis of Metatarsus Adductus, which causes the front half of the foot to turn inwards, creating a bean-like shape.
Zach is a physically active and adventurous kid. He loves running, riding his bike, kicking a ball and most forms of physical activity. This year, for the first time, he has complained of pain. He recently had casting due to a loss of movement, and it is likely he will need further treatment in the not too distant future. In the beginning I was optimistic that his clubfoot journey would be relatively short lived over his lifetime, but I now worry that it will be an ongoing navigation of treatment, tightness, pain and curly feet. When Zach ceased wearing his bracing we had a “Bye Bye Boots” party. We celebrated with cake, decorated with an Irish proverb: “May your feet take you, where your heart wants to go”. My wish for him is that his gorgeous little feet not only take him physically where he would like to go, but that they also remind him of the resilience, strength and determination that is so inherently him.
Our youngest son, Thomas, was diagnosed with ‘Apraxia of Speech’. It is a neurological, motor speech disorder, where children have trouble producing sounds. Thomas understands everything that is said – and often what is unsaid, too. He knows exactly what he wants to say, but his brain has difficulty coordinating the muscle movements in his mouth. Although elements of speaking will probably always be difficult for Tommy, given time and specialised treatment, children with Speech Apraxia can become fully verbal. It’s incredible to learn how well we can communicate without words when we are called to do so. We have used sign language, gestures, tone, expression and then an iPad with a ‘talking’ app on it as he got older. We continue to follow an Early Intervention model of therapy. While there are still many sounds and combinations of sounds that are tricky for him, the progress he has made overall is remarkable.
I worry that Thomas’ lack of speech and the awareness he has that he sounds different, cause him to retract and become isolated in some situations. I worry about how Apraxia may impact his ability to learn in a traditional school environment, and that his playful, cheeky nature may not get a chance to shine. I can’t help but notice how often he is unknowingly misunderstood, and my heart breaks for him when I know that he knows that has happened. My wish for Thomas is that he is able to express himself fully, and be understood. I hope that his magnetic character continues to attract people who will include him, and allow his creative, ingenious and full-to-brimming little personality come even more to life.
Natalie: I know siblings can be a wonderful source of inspiration and connection. What have been some special moments between Zach & Tommy?
Lana: In March this year we had a family holiday to New Zealand. One afternoon the four of us were traveling inland, having had hours of fun at an iconic kiwi beach. I was handing out car mints to everyone. Passing one to hubby, he playfully responded with “thanks Mama”, in that way we parents use to demonstrate desired behaviour to our children. I handed one back to Zach, and he too said: “Thanks Mum”. Then I handed one to Thomas, expecting his usual short, guttural ‘uh’ sound for ‘thank you’, followed by a pause, and then “Mum”. It usually took him a moment to string two sounds or words together. But that afternoon he said, plain as day, “ank you. Mum”. We couldn’t believe it.
At nearly four years of age, our trip had coincided with Tommy making notable progress with his speech, but even still, him attempting new words and with such fluidity was astonishing for us. Chris and I congratulated him, trying not to make too much of a fuss – all the while grinning ecstatically across the car at one another. A few minutes later I turned around, surprised to see tears streaking silently down Zach’s cheeks. “What’s wrong, buddy?” I questioned. “Tommy said ‘Thank You’ for the first time” he replied, “I’m so proud of him”. Zach had understood and felt the enormity of that moment, just as we had.
Every day there are times I struggle to understand what Tommy is saying, but often his big brother is able to translate. Twenty-one months apart in age, they are brothers in every sense of the word. They fight and provoke and antagonise one another, but they are also undeniably connected. Those moments when Zach becomes Tommy’s voice is always a truly proud and inspiring Mummy moment for me.
Natalie: The journey of medical issues with children is not for the fainthearted, how do you cope? What self-care practices do you do (if any) so you can continue providing the high level of care your boys need.
Lana: My personal self-care seems to be a continuous work-in-progress. I know that writing and adventuring in nature are restorative for me, and so I love to sink my teeth into a new project, or into discovering and exploring a new location. Both give me a sense of fulfilment and accomplishment. The ocean, fresh air and beautiful landscapes are always good for my soul, as is unravelling my thoughts into the written word. I’ve noticed that the more regularly I write, the kinder I am and the better I cope.
My biggest act of self-care has probably been to become more comfortable with the truth that I function best when I’ve had time to myself, away from my role as Mum. Choosing to live in a country away from ‘home’ can make that difficult, but not impossible. We recently reached out to both of our families, and asked for help. The break they gave us has been incredibly rejuvenating, and helped to get our relationship, which had been suffering, back on track.
Natalie: What are some lessons and blessings you have learnt since becoming Zach and Tommy’s mum?
Lana: One of the greatest blessings of my parenting experience so far, has been the way in which my life has been directed to new beginnings. If I was not Mum to Zach and Tommy, I would never have formed so many wonderful new friendships – both on a social level, and also with professionals through our boys’ therapy and treatments. Without them, I’m not sure that my focus would have shifted from finance work to writing, or that I would have had the opportunity to be part of some life changing projects and warm, welcoming communities (more on that, below).
I’ve learnt a lot about myself since becoming the boys’ Mum. My staying power and my ability to investigate and advocate has become stronger and more purposeful. I’ve learnt that if you are passionate about something – if it really matters to you, and if you willing to keep looking – you can almost always find a way…just not for everything all at once!
And I’ve learnt that much can be conveyed purely by eye contact.
Natalie: What pearls of wisdom do you want to share most with mums who are at the beginning of their journey, whether its special needs or medical issues?
Lana: For me, one of the most important parts of the process was to give myself permission to grieve. It’s OK to take some time to feel sad or worried or worn down. I find that if I allow that to happen, I’m then able to transition more naturally back to a calm, productive and positive frame of mind.
Alongside that, you also need to be prepared to move forward. It can be easy to dwell in the hardship and overwhelm at times. As long as you know you have space set aside to feel what you’re feeling, then I think it’s also vital to make a conscious choice to keep going.
And lastly – and importantly! – trust the people close to you who know that you can do this.
Natalie: How can we help other mums going through similar situations?
Lana: There is a lot that goes on behind the scenes when parenting kids with extra challenges, even when things appear fairly smooth on the surface. Appointments, therapies, research, meetings, paperwork and phone calls all need time and energy dedicated to them. These experiences can be both a magical place of progress and celebration, and also a painful reminder of struggle and sadness.
So much of this becomes day-to-day life, but sometimes, for me at least, it gets too much. I am always grateful to my friends and family who give me their time and attention, allowing me to talk through where we are at.
On a practical level, you could offer to accompany a Mum you know to their child’s therapy, be a support person at meetings, or gift them some time to reconnect with their partner. Taking over the regular household duties and decision making from time to time, creates space for them to attend to the extra ‘behind the scenes’ responsibilities that I mentioned above.
Above all else, see the unique strengths and gifts these little humans have, and be willing to celebrate the milestones which are significant to that family.
Natalie: It can be extremely isolating for a mother going through this journey, and family and friends can struggle with how best to respond. Do you have any advice? What helped you?
Lana: I think the best way to respond, is to be proactive. And I don’t necessarily mean physically showing up, because that’s not always possible or preferable. I mean show up in conversations, in messages that don’t expect a response, and in your positive belief of the family. Listen, ask questions, and then listen again to the response. I think it’s enormously important to not diminish or downplay another person’s challenges, and equally important to help each other see possibility, feel hope and be reminded of our strengths.
Natalie: You have been amazing at raising awareness for Talipes, clubfoot. Featuring an incredible story about a little boy named Tobias in Paraguay on Channel 7 Australia. This story was ‘Top 5 most powerful stories of 2016. Can you tell us more about this?
Lana: That project has been one of the most rewarding things I have ever been involved in. It is such a heart-warming story of community and human goodness. It still blows me away that we were able to find a little boy in a poverty stricken village nearly 13,000km’s away, and arrange treatment for him. I remember watching the story of Tobias and his little feet as it was aired on the ‘Sunday Night’ show. (https://au.news.yahoo.com/sunday-night/video/watch/31371430/how-a-sunday-night-story-changed-this-boys-life/#page1) After the giddy high of pride and excitement had passed, I was left with this feeling that there was so much untold. So many wonderful, everyday people involved in achieving that outcome, had been left unmentioned… so many people who contributed in their own way, who said ‘yes’ when we asked for help, and were willing to go above and beyond. I’ve not been able to ignore the nagging sensation that I want this story to be told in all the imperfect and ungraceful ways it came together, so that it can be forever captured and etched into the life story of myself and all those who made it happen. Hopefully Tobias’ story may even nourish others and inspire them to create their own positive change in the world. I’ve begun working on my next book, tentatively titled ‘One Boy’, which will be the full story of Tobias, his feet, and all the positive ripple effects those little feet created. Watch this space!
Natalie: Do you have a favourite quote, prayer, or piece of miracle inspiration that you would like to leave us with?
Lana: I currently have the quote ‘she believed she could, so she did’ framed by my desk, but I think my all-time favourite reminder to myself, is that all I ever need to do, is Take the Next Step.
Natalie: It is such an honour to be able to share Lana’s story with you all. I first connected with Lana through the clubfoot community and she was so gracious to gift her book ‘Trust Your Melody’ for a local fundraising event I was organising. It was around this time that I discovered the incredible work Lana had been doing, not only for her family but for so many others. I’ve been in awe ever since! I am so grateful for the love, wisdom and support that she imparts. Thank you Lana, for all that you do for so many mother’s and children here in Australia and all over the world.
If you would like to share your miracle moments and special needs journey, please get in touch here.
#themiracleproject “Uniting our stories across the globe”.