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Unstoppable Me

January 13, 2020

When my youngest was a teeny tiny newborn (teeny tiny he is no more), my boys were given a book called Unstoppable Me. The story’s all about Makana the surfing lion who wants to give up when she’s pummeled again by a ferocious wave. It’s written by Adam Dirks and Bethany Hamilton.

Bethany Hamilton knows a thing or two about how challenging life can be. As a 13-year-old up-and-coming surfer, tragedy struck when she lost her left arm to a tiger shark. Everyone assumed this would extinguish the rising star’s dreams, but not 4 weeks later, she was out on the waves again. Bethany has gone on to become a champion surfer, an awe-inspiring international speaker and a best-selling author. Her infectiously positive spirit and her unshakeable faith, has inspired people world-wide to live their best lives.

My three littles also know about life’s challenges… My big little, now 5-and-a-half, has had sensory-integration issues since birth. This can make the world an incredibly overwhelming and, at times, scary place. My middle little and my little little both have a genetic condition (inherited from Yours Truly) which causes contractures of the hands and feet. This can result in anything from clubfoot to vertical talus to hypoplastic thumbs – big names which simply mean that the hands and feet don’t function properly. Needless to say, we’ve seen our fair share of doctors, therapists and plenty random artwork on hospital hallways (if you’ve ever paced through the passages of a hospital, you’ll know what I’m talking about).

And yet, these three littles of mine have taught me the biggest life lessons when it comes to curveballs. Like Makana the Lion, they tackle life’s challenge’s head-on. Here’s a smidgen of what I’ve learnt from their lion-heartedness and watching them in the trenches.

Acceptance is key: Yes there are tears, but there’s also acceptance. “Ok, so this is what life has thrown at me, let me adapt.” The day my baby (15 months old at the time) came home from bilateral hand surgery, his hands all bandaged up like a mini boxer, he realised he couldn’t pick up really small things. So he simply started stacking bigger blocks he could manage – something he had never done before. Not a few hours later he figured out how to pick up his dummy using only the tips of his fingers and put it in his mouth. And that of course, as a mommy looking on, finished me off.

Just a few hours after Ashton’s operation.
Fine motor (if you pardon the pun) for a fine boy.

You can sit-down and cry, or you can get up and fight: Your choice. Have you ever seen a toddler toddle over while learning to walk and refuse to ever get up and try again? Errrr, no. In fact, it’s not even an option. My middle little had severely contracted wrists, hypoplastic thumbs, small, rounded shoulders and windblown fingers at birth. He was in hand splints as a little pip. And yet he would not let the infamous monkey bars at school get the better of him. For a while, every morning he’d cry his heart out saying he didn’t want to do the monkey bars, and every afternoon he’d come home asking when we can get some! Needless to say, he finally conquered them.

Chase – 1; Monkey Bars – 0

Life is not perfect and neither are we: Facebook is brilliant at showing off people’s “highlight reels” – you know, all the good stuff and the high points, but none of the slog, the pain, the frustration and fears. Well, we all know that life just ain’t like that. Embracing our imperfections and sharing our challenges, gives others the right to share theirs too and find encouragement in the journeys we’ve walked. Sometimes the very thing that we think is the ugly “thorn in our side”, can catapult you to live your best life. Just look at Bethany. Unlike Facebook, no one has shiny-faced perfect kiddies – we have little souls learning, growing, playing, fighting battles, stumbling and laughing their way through life. They know nothing of “the perfect image” – they just simply be.

Impossible! Says who?: Who are we to judge what’s possible and impossible for another human being? A baby with a Ponseti foot brace and bandaged hands can’t possible climb a flight of stairs… Um, well, that’s the last time that baby gate’s being left open. The strength of someone’s spirit can’t possibly be measured. That’s the only impossibility I guess.

Ain’t nothing gonna hold this little man back.

Fear is real, but it doesn’t have the final word:

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” – Nelson Mandela

I love this quote and my Max is a living example of it. We knew something was up with our warrior when sleeping, bathing, car-trips, exploring, vacuum cleaners, hairdryers (essentially routine parts of everyday life) became completely overwhelming. At 9-months, a trip to the OT made things clearer. Big Little had sensory integration issues – basically the “volume button” on sensory input (sights, sounds, smells, touch, movement) was too loud or too soft. Swings, cars, busy shopping malls, new tastes, the feeling of floating in water, loud noises, sticky craft glue, twirly slides and shaky jungle gym bridges all became… Just. Too. Much. Added into the mix was low muscle tone and a proprioceptive system (the sense of our bodies in space) that was not functioning optimally causing Big Little to constantly bash and bump into people and avoid putting himself in situations where his body felt unstable, like climbing a jungle gym.

Max was scared a lot and scared of a lot, and understandably resistant to trying new things. His first encounter with the roaring ocean made him run in the opposite direction. The bath set him off screaming, the car induced hysteria and an innocent strand of spaghetti caused gagging and general mayhem. And yet, with the love and care of extremely devoted therapists and teachers, and a whole lot of tears and determination on his part, he is now living life at full throttle.

“Courage is fear holding on a minute longer.” – George S. Patton

This picture of my boy just lapping up the ocean is a testament to his courage in facing his fears and running straight for the waves. He is now a thrill-seeking, jungle-gym climbing, new tastes-and-textures-trying, wild-at-heart boy. Yes he still has a lot to deal with, but his bravery in taking it all on truly inspires me.

Max exploring the great big ocean.

Here he is conquering all kinds of challenges, putting his vestibular, proprioceptive and gross motor systems to work, and coming out on top!

Max’s Mountain.

The other day Max came running into the house, elbow really grazed and a big gash in his hand. “Mommy!” he said, “I fell off my bike and I didn’t cry.” This from a boy who’s “pain volume” is turned up and for whom hurting himself, well, really hurts. “I’m going to get on my bike again right now, because I’m unstoppable.” Yes, my boy, you are.

There is always someone in your boat: You are not alone. Someone else is going through this or has been through it. Reach out. Ask for help. There’s someone out there who understands – I mean, really understands… Walked the road, fought back the tears, cried the tears, celebrated the small wins (aka big wins) and managed to laugh again after a dark stormy night. Through our arthrogryposis journey with middle little and little little, we had a lot of support. We were in the privileged position to learn from family who had been through it all and could give us extremely helpful contacts, tips and insights. It made the world of difference.

With big little’s sensory integration journey, it was the opposite. I felt so alone and completely ill-equipped to handle it. I remember many afternoons crying huge drops of tears into Max’s cot, while my over-stimulated, over-tired baby screamed and cried his heart out, but just couldn’t fall asleep. As a very sensory-sensitive person myself, I felt like I was the wrong pick to be this little boy’s mommy. How could I possibly help him? His crying cut me to the core. And then it slowly dawned on me that God’s ways are higher than our ways (of course they are!) and that Max and I had been paired up for a reason. Because I have sensory issues, I understand. Because noise, often his noise, can sometimes make me lose my marbles, I understand how it affects him. Because I’ve got first-hand experience with this, I am in his boat.

Just knowing someone is in your boat can give you the courage to face the waves again. If you’re needing someone in your boat, please call out.

Pain is not always the enemy: As a parent, you want to shield your child from as much pain as possible. If that weren’t the case, I’d question your sanity. And yet, pain is a great teacher. Pain teaches resilience, determination, a well-rounded view of life, and most importantly, compassion. You can see a child who has seen life. There’s often a depth there that can’t be taught, as well as, a genuine concern and heart for others. We all want our children to be happy, but do we really want them to always be comfortable? Do we want them to be privileged wishy-washy little souls who sway to the wind of peer pressure or fold under life’s pressures when they face the real world? Don’t we want to instill strength, independence, empathy, courage and the stickability in them? Pain has a way of doing that. When obstacles come their (or our) way, remember that pain is not always the enemy.

And so when my boys are facing something tough, I love to say to them, “Be unstoppable!” But in fact, without saying a word, they’re telling me the same thing every day. Just so much louder and clearer.


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1 Comment

  • Reply Lionel Edworthy January 13, 2020 at 10:31 am

    Se, as always I don’t believe anyone can describe the plight and strength of our boys as you have with so many beautiful video illustrations and your’s and david’s dedication as loving caring parents. xxx

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