There was a time when only I knew you were there. I was the only person in the whole entire universe who knew you were coming. A wonderful natural secret. My best secret. That moment was private and just ours. Just (what turned out to be..) the three of us. The double blue line on the stick in my uniform pocket confirmed my world was about to change. I smiled from the inside out.
The technology let us see you. And count you.
1….2. A matching pair.
Before you were born, I saw you in my mind. I saw you both behind my closed eyes, wondering who you’d be and how you’d grow. I felt you move and dance together, tucked up tight. Uterine walls protecting you from the world. I tried with all my might to keep you there.
The day you were born, I heard you. I heard your cries as you took your first breaths. Born too soon, here too early. I couldn’t see you. Too much plastic box separating us as you began that fight for life. I should have been keeping you warm but the plastic boxes took my place.
When you were two weeks old, I held you. Skin to skin. So tiny. Skin like paper. Fingernails as small as a grain of rice. You turned out to be stronger than you looked.
When you were 12 weeks old, I brought you both home. Home, accompanied by the tubes that kept you alive. I sang to you but spoke and prayed to the powers that be that they’d give me the strength to handle all this.
When you were 1, the words came. The words from Drs that labelled you with my deepest fears, but those which I already knew. Cerebral Palsy had arrived. As much as you two had arrived early into this world with gusto, loud and proud, disability had arrived and made it’s own mark – albeit unwelcome and feared.
When you were 2, the therapy was in full force. I took you anywhere that would help and scoured online resources for clues of cures.
There was no cure.
When you were 3, I heard you. The words from doctors who were still delivering new diagnoses to your reams of medical notes started to sound muffled as the most important words came from you. Sounds I wondered if I’d ever hear. Sounds I had assumed I wouldn’t. ‘Mumma….cuddle….’ Nectar for my ears. Sounds so sweet they made every single heart aching moment of the last 3 years slowly shrink away.
When you were 4, I had to let you go. Big school beckoned. You’d been with me every moment of nearly every day since the plastic boxes. I had attended every meeting, took you to every appointment, did all the therapy. Day in, day out. Now, someone else had to take their turn to nurture you. I missed you and somewhere, somehow, I had to find myself again that I had lost the day you were born when I became dedicated to making the best of this roll of life’s dice.
When you were 5, my heart had started to repair. I saw you drive your power chair, which became ‘your legs’. Not destined to walk, your ‘first steps’ were using wheels. I saw you read your first words. Both with brains so damaged, yet brains so beautiful.
When you were 6, you looked settled. You made friends. Operations held you back, but you returned to full force with determination I have only ever known in you. When you were 6, things started to become normal.
I’ve lost context of what normal is. But, if normal is meant to be what is standard and ok in your own world, then ours is normal. Yet, if it’s a term that is supposed to fit in with the crowd, then we are alien light years away.
When you were 6 became a period of personal enlightenment. A realisation moment. No one can really understand what I think in my head. No one will truly appreciate what I hide behind a pair of high heels and red lipstick. No one will understand how I’d give anything to have a ‘normal life’.
Where you can go to the shop for milk without it becoming a major military exercise. Where you can just ‘jump in the car and go’. Where you don’t have to look online for places to go with appropriate disabled access. Where you don’t live your life amongst equipment that dictates your house decor. Where you can have the morning post arrive and not have at least 1 hospital appointment. Where you can just have a babysitter that is not qualified in everything disability related. Where you can pick your son up without the disapproving looks that the ‘hoist should have done that, not you’. Where they are referred to as their names rather than ‘which one is the one in the chair?’ Where you don’t have dreams that they will lead a normal life…and wake up and realise that WAS just a dream. Where I can go to work.
People see our life….but they don’t REALLY see it. Unless you’re doing it too. Then you know.
When you’re 7…..I know what it will be, of sorts. It will be more of the same. Hopefully with the friends and family I have around me now which is how we got to 7. How lucky we are.
It may sound odd having written the above to talk about luck. But when you are 7 I will count every single moment then, just as I do now, as incredible. I have no doubt that when you are 7 you will achieve something else they warned me you never would. As you are amazing little boys and whilst I wish things were easier for you, I love the bones of you and your perfect imperfections. Normal life is probably overrated.
You will carry on the awesome. You will be super and brave and funny and proud. Read more words, wheel those wheels.
When you are 7, I shall love you even more than I do now, if it’s possible. Let’s look forward, not back.
….after all, 7 is my lucky number.