I get it. It’s hard to play second fiddle. It would shit me to tears being the younger sibling to a brother who wins stuff and gets awards and seems to have more than his fair share of moments to shine. So when I told Scarlett that Mac had won the U15 boys swimming medal, her response was “of course he did”, followed by an eye roll.

I understand her anguish, I really do, but I reminded her that her big brother achieving something doesn’t take anything away from her. I’d hoped that she would be happy for him. But I still “get it”. As much as we don’t make Mac’s health a topic of too much conversation, I gently reminded her that these small victories taste a little sweeter. Sure, he’s not an Olympic athlete, but at the same time it’s a big fat giant middle finger to CF. This stupid disease might eventually rob him of being able swim at all, let alone win a race.

Her eyes dropped down, and silence fell. I didn’t want to make her feel bad. God parenting is hard. “But I still get it” I assured her.

Earlier that day a woman approached me after the swimming carnival, sharing her congratulations to Macauley and telling me how she hopes I let the doctors and people at the hospital know what he achieves. “He’s an inspiration” she added. Wow. Inspiring. I guess he would be for some.

Later, I realised that it’s not the people at the hospital who need to hear this story. It’s new parents of children who have CF or any other condition which may see them sitting behind the eight ball of life. I remember being drowned with the harsh reality that was ahead, eagerly searching for the positive stories. I needed good news. I had to know that sometimes good things would happen too.

This one is for them….

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Dear You,

I see you…The new mum who’s holding her baby in the waiting room. I see you grapple with forcing medication into your brand new baby. I see your eyes darting around this strange place, which one day, will become all too familiar. I see you staring off into the distance wondering what this all means. I see the exhaustion and stress on your face….a deer in the headlights of an insidious disease, beaming into your reality.

I hear your thoughts…What does this mean for my child? What is his future? How sick is he really going to be? Will I have to bury him? I can’t ever leave him. I can’t ever go back to work. We can’t ever have any more children. This is it. Our lives are going to be swallowed up by doctors appointments and sickness and treatment and sadness.

I see you, as you research every morsel of information. I see you, as you constantly clean your house and disinfect toys to prevent the germs. I see you, as your stomach flips inside out at the sound of another child coughing near your baby. I feel your anxiety not knowing how to stop the sickness, how to stop the germs, how to protect your child from normal childhood things. I feel the monotony and relentlessness that daily treatment brings you.

But as they say, time stands still for no-one. The days roll into weeks and the weeks become months, months into years.

The roller coaster you are on is sometimes scary. You will scream for it to stop, but you’re strapped in and can’t get off. You will get used to the ride, and settle into it. You will eventually go back to work and will be able to trust others to take care of your baby who is now a toddler. You will have more children too. Your life and that of your family’s won’t be swallowed up by this disease, because you won’t let it. You will somehow become used to the sharp turns and the steep falls. You will learn to expect the unexpected and be open to the unknown. Once you’ve been on this ride for a while, you will learn which dips you need to brace for and which ones to simply raise your hands and surrender. You will surprise yourself at how far you’ve all come. The daily grind will become part of a daily routine, and the things you stayed awake worrying about will seem not so worrisome anymore. Life will be messy and good and normal for the most part. The disease will get the attention it needs but you won’t feed the beast. It will have no more power or control over everyone’s life, other than which it is given. It will define no-one. You will make it fit. You will work around it. It will be like the unwelcome visitor at Christmas… the drunk uncle in the corner. It has to be here, but you don’t have to like it and you’re certainly not going to celebrate it or give it more attention than it needs.

Then one day you will turn around and your baby will be almost 15. Not only is he taller than you now, but he is also living a pretty awesome life and achieving things that you never thought would be possible for that little baby in the hospital waiting room.

To everyone’s surprise, those runty little legs helped him run like the wind. He began to love sports and he wasn’t too shabby. He went on to win trophies and awards and ribbons for all kinds of stuff. He got picked for teams and development squads. He collected a shelf full of trophies and a draw full of ribbons. Along with this he managed to come home with some snappy school reports despite the missed weeks for hospital stays. He developed a good work ethic and strives to improve. He helps out, takes on leadership roles and despite the normal frustrations of raising a teen, he is turning out ok.

Somehow, this disease which was seen as such a curse, has given as much as it’s taken away. It’s taught the lessons of patience, persistence and determination. It’s taught us all about resilience and the power of reframing thoughts. It is part of the fabric that has made our son who he is. It’s part of the fabric that has made those of us who love him.

The future is still a scary place. It’s still unknown. There are some fabulous new treatments, but there’s still no cure. There will be many hurdles to jump as time unfolds. But that’s a truth for everyone, with or without a chronic illness.

Out of all the things you will need to power through the hard times, it is the power of hope. So strap in, hold tight, cross your fingers and be prepared for the possibility of being pleasantly surprised.

Love, me.

M