Sweet Saraya – The Blog » A mum with a camera, keeping her loved ones in the frame.

Being Normal.

Today, I got to experience what it is like to be a “normal” mummy.

Today, my eldest child was with his daddy in Sydney, undergoing routine tests for a drug trial that he is participating in.

Today, it was just me and my three younger and able-bodied children.

Today, we went on an adventure, a spontaneous adventure. We drove to a park that was set on the side of a hill, and had flying fox, and climbing pyramids, and steps and slides. The kids rode bikes and ran, they ducked and weaved around the playground structure. And I simply sat. And watched.

Today, I didn’t have to worry about uneven ground. I didn’t have to worry about unruly kids racing around and knocking over my boy, potentially breaking his leg.

Today, I didn’t have to worry about him climbing steps, and then trying to get down.

Today, I was able to let my children run free and not have to expect them to slow down for their brother. They adore him and always try to include him, but just for today it was nice that they could be “normal” kids and play like “normal” kids do.

Today, I didn’t have to worry about a child who realised he couldn’t keep up, who fatigued easily, and who resorted to his iPad for entertainment.

Today, I didn’t have to watch him watch other kids, and see the look of pain in his eyes as he is reminded that he is different. I didn’t have to feel my heart break for the millionth time, for my little man who would no doubt be standing taller,  running faster, jumping higher, and laughing more than the rest of them. If not for his disease.

Today, we parked away from the playground and we walked. It was a fair distance, but we are all able-bodied and we walked. I was happy not to use the disabled spot for a change, and leave it for others who needed it.

Today, we drove home via the beach.

Today, we made an impromptu stop at the beach as it was late in the afternoon and the beach looked beautiful as the sun moved lower in the sky.

Today, we walked along the beach, not worrying about a boy who is unable to walk down the sand to the water. We did not have to push a chair through the sand.

Today, as the kids walked along the water’s edge and frolicked as the waves licked the shore, I didn’t have to again watch my son wistfully gazing at them, wishing he could join in without his body crying for rest.

Today, we walked up the beach and nothing held us back. We picked up shells, we made sandcastles, and we raced each other. We felt alive in the breeze, with the sun on our cheeks, and it was only the chilly water crashing into our feet that reminded us it is still winter.

Today, we plodded back up the beach, up the stairs and along the wooden walkway, back to our car. We brushed the sand off our feet and clambered into the warm interior, our cheeks flushed from the wind and the cold.

Today, I remembered what it is like to be a “normal” mummy. I was reminded what it is like to have healthy and able-bodied children.

But today, I also missed my James.

Today, was a normal day for most people, but today was a reminder for me. And that’s all it was, a reminder.

Because tomorrow, my darling boy will be back with his daddy and our lives will resume as normal.

A life without James, or his three siblings, would not be a life worth living.

This is our normal, and it is not easy. It is not a walk in the park or a run along the beach. It is a life of worrying and wondering, of constant planning and compromises, of living each day fully and not putting things off to a later date. Time is not on our side, before we know it James will be gone. But at the same time, I don’t want my other children to miss out on all that I took for granted when growing up.

And that’s why today is a day I will treasure, and they will treasure. Not because James wasn’t with us, but because my other children were able to do what other “normal” kids do. They deserve a little bit of that in their lives.

The only one missing today was James. My wish would be for James to experience life as a “normal” child.

If just for one magnificent day.





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