Things I have learnt from my son
The first few moments were breathtaking. The first few hours were intense. The first few days were long. The first few weeks were tiring. The first few months were busy. The first few years were a blur of diagnosis’s – a label for each and every thing that was wrong. The next few years were full of surgeries, therapies, specialists and medications to try and fix.
Neuronal Migration Disorder was the first of a long line and ever evolving list of diagnoses we have received for Christopher since we emphatically declined their offer to terminate at 31weeks. It was not an option for us to force nature’s hand – if it was as bleak as they predicted we wanted to hold on as long as possible before we said goodbye.
And while each diagnosis felt like a kick in the guts while we were down – Congenital Cytomegalovirus, Microcephaly, Severe Global Developmental Delay, Cerebral Palsy, Epilepsy, Cortical Vision Impairment, Unilateral Hearing Loss, Residual Constipation, Hip Dysplasia – each and every moment of his life is full of hope.
Our boy will soon turn 8.
I will not for one minute sugar coat our journey. It is tough – some days more than others. Often full of heartbreak, fear and uncertainty. We are constantly second guessing ourselves and our decisions, continuously assessing our actions, plans, positions and the environment for risks. Every night kissing him goodnight with our blessing, unsure if it will be his last; every morning thankful that we get to see his joyful smile again. But throughout the devastation and the hurt, we have had our eyes open to life and learnt so much.
Our boy brings a peace with him that we proudly share with all around us. He is pure sunshine and I truly believe we are better people now because of him. Caring so deeply for someone who faces daily hardships, or is different, brings with it a certain clarity. A fresh perspective. Lessons that should be shared.
Things I have learnt from my son.
Bravery Comes In All Sizes.
The things I have seen this boy face! He has endured pain, battled epilepsy episodes, survived surgeries, withstood medical procedures, and put up with us fluffing about trying to work out what is going on with him, all without a single word of complaint. He starts each day fresh and almost always has a beautiful smile on his face. No matter what this life throws at him, he continues to share his sunshine, and peace with those around him. With minimal effort, he gives us strength and allows us to keep moving forward, day after day.
A Smile Is Worth A Thousand Words.
Christopher’s smile is actually the best thing in the world. It lights up the darkest room and brings sunshine to the cloudiest of days. While our boy can not talk, he has the ability to look into your soul and speak straight to your heart. More often than not, leaving you feeling loved and full of gratitude for this incredible life.
Don’t Sweat The Small Stuff.
Each and every day we all come across a minor grievance or something that bothers us. Issues we would have once taken up with others or made a stand about, we now let wash over us. Christopher’s struggle to survive, his bravery to live and the smile he continues to share with us puts it all into perspective. On one hand we would much rather just spend as much time as possible with our boy with clear heads and hearts, happy to be soaking up his glorious presence, and on the other he has taught us humility – his life is full of challenges and hurt, yet he still smiles, he still sees joy and is happy.
Gratitude and Grief can be Friends.
There are certain things that parents struggle with when their children receive a diagnosis. Some more than others. Regardless of that diagnosis – the life you had pictured for your precious babe is no longer. In a split second it has been shattered into a thousand tiny pieces, and grief will forever be by your side. While you grieve the image of your precious babes life, and you’ll wonder about the person you were convinced they would be, the life they could have lead / shared with you and all they could have achieved; the impossible happens and new windows of opportunity are opened, and the gratitude comes flooding in. While I grieve the boy who could have kicked the ball at the park with his dad, I am so grateful for the boy who is still here, sitting by our side. While I grieve the boy who could have been a fierce protector and epic annoyance to his sisters, I am incredibly grateful that he is in their lives. He is their greatest teacher. While I grieve the boy who could have flung his arms around my neck and near choke me with affection and love, I am beyond grateful for the beautiful boy who looks up at me with such love and adoration when I cradle him to sleep each night.
We Are All Human.
Each and every single one of us. And when you look past the basic primal needs – food, water, shelter; disability or no, we all want for the same things. To be encouraged to follow our dreams, our passions, our interests; to feel as though we belong; and to be accepted and loved for who we are, exactly as we are. This level of true inclusion and acceptance should be accessible to all – and when given freely is rewarded ten fold. Christophers smile is no bigger than when he is with family. Our family is big, loud and proud and he loves nothing more than to be right in the middle of it all. There he is accepted and loved beyond measure. For no reason other than because he is Christopher.
Pam along with her husband Tom and their children – Christopher (7), Charlotte (5), Matilda (3), and Maxwell (3months) – live in the ACT.
Pam is passionate about supporting new mums and their mental health, particularly mums of children born with disability / additional needs and receiving diagnosis. She is also passionate about ensuring siblings get support too. Pam is actively involved with a number of groups around the ACT, to provide friendship, support and understanding to families in this space. A mum four times over, her eldest born with cCMV, she has a unique insight and knowledge of the multifaceted journey many families face. Sharing their story, not only helps her heal, but also allows her to help others.