The two most loaded words..
The lead up to our wedding day was like monsoon season, it rained non-stop. It was a welcome surprise to wake on Saturday to a beautiful sunny day, not a cloud in the sky. With all the hype that comes with such a day, I made it a priority to find some solo space to refect about the past and dream about the future.
I wondered what life had installed for us? What adventures we would go on? How many children we would have? What place would we create our nest in? What sort of mother and wife I would be through all the seasons of life? So many thoughts came and went and once the thoughts settled, I took a few deep breaths and the next thing I knew I was walking down the isle, to make one of the biggest commitments in life, to marry.
We already had a daughter named Grace, who was 8 months old. In a sense we had already taken on a bigger kind of commitment, to bring a new child into the world and see that we raise them with upmost love and care.
So here we were, standing opposite one another about to commit our lives together, forever.
I wondered if the strong Taurean would buckle with the devastating news that would come his way in a few years time? I wonder if he knew what fate had install, would he still say those two seemingly subtle two words, I do?
I wonder if the dreamy piscean who dreamed of happily-ever-after would look him in the eyes and whisper, I do – as her world would come crashing down around her as the doctors would lower their heads and say “I’m sorry, the hope for a cure is simply unrealistic”.
For the two souls committing to their forever’s in front of family and friends had no idea how drastically their lives would change in an instant. They would not yet know of the immense grief that would shatter their worlds in two, and they would not yet know, that only their love could bring about immense change, if only they could ride the storm and discover their new norm.
I wonder if they knew the wrath of grief they would both throw at each other, like flashes of lightening and roars of thunder, when they were coming to terms with a diagnosis that would challenge their child and their lives in every hour of every day? I wonder if they would smile so innocently into one another eye’s, knowing that both their lives would be tested in ways never before.
They would spend years in and out of hospitals, losing a grip on what they knew parenthood to be. They would walk corridors of their homes and hospitals holding their child in pain.
They would come up for air every now and then, and celebrate the beauty of love, of their two children and of life. Yet things would turn so suddenly, an urgent phone call to 000, a rush to the hospital, another neurology meeting, or was it orthotics, or speech pathology, or physiotherapy or genetics or more.
They would need to navigate a world of paperwork, to access funding for an item that seemed so urgent, months of follow up calls, applications and more. Yes, my child has x, y and z and needs to access this therapy or special needs seat, then having to fill out a thesis of admin to explain why, can feel like an impossible feat. That the needs are immediate, NOW and too late! It can test a mother’s patience and have her feeling like a bull at a gate..
So this couple would need to learn to lean on each other in times of need, because the sheer exhaustion can take you both out at the knee’s. There were no silver linings from the medical profession, no limbs that would work, no voice that could share, no life span that was protected. They took everything away in one fowl swoop and the injustice felt like cruel blow, like our lives would live in winter and only ever snow.. Yet it would be up to these two parents to fight fiercely for their child, their reality and their truth. To make the most of their life and give their daughters, for them it was no sacrifice, no nothing less..
For no one is immune to the hands of fate, especially these two souls who stood at the alter to await, a life of I do’s, in sickness and in health…
I wonder if this man knew how courageous he would be, how he would push the masculine role aside and step in where need be. I wonder if he knew, that in his children he would see, the most beautiful creation of beauty, wonder in awe. I wonder if he knew what an incredible father he would make, protecting their lives at whatever the stake.
I wonder if this woman knew how fierce her love would get, when she looked deep into her daughters eyes, knowing their would be no time for regret. I wonder if she knew how much she would push, fight and advocate for her tribe. She would buckle under stress and a mothers worry time and time again, but she would keep showing up braver, stronger and wiser none the less, this woman was only ever trying her best..
I wonder if this couple could take a few steps back, and reflect on each of the others qualities and how they made their new “after diagnosis” life adapt. Each of their qualities were perfectly matched, to bring forth this life challenge and move beyond themselves. For the chaos and calamity of raising a special needs child, can force a married couple’s hearts to turn completely wild.
If they can harness their power for good and not bad, my God the power they hold together as they stand, is infinitely more stronger than standing alone…. for their two littlest creations need them to be, standing united in this rough and uncharted sea.
There have been many blessings and lessons through this special needs parenting path. The incredible celebrations when a micro milestone has passed, or the end to a hospital stay and a return to the norm, until the next sudden special needs storm 😉
There’s been beauty in community, friends and family each flooding our lives with extra hope and until the end..
There’s been popping of champagne when we celebrate the good, there’s been belly laughs of adjusting hidden in between. There’s been a life made with purpose and injected with love and extra fuel – of the things that really matter – the absolute real.
There’s been I am sorry as we all sit on the kitchen floor, family group hugs as many tears fell on the floor.
Yet through all the learnings, I must honour the one that was created at the start, when two souls stood in front of the alter and exchanged their I do’s. For this moment and commitment was no small feat, and their seeds of love will definitely reap, abundance, miracles, joy and more… my goodness this family has not even opened the door.. to what possibilities await with a life of love, dear Grace and Chiara you are both our pure white dove’s…
Thank you for sharing this magical and mysterious life..
Yes, I believe on this full and super moon, I must also celebrate Mauro and Natalie – known as husband and wife.