Time Warp

“He’s got a lot of disabilities, but he’s got the heart to try.”

I heard the simple explanation emerge from my mouth. We were at a new playground and Cayden was trying to scale a rock climbing wall to reach the ultimate reward – a huge slide. It was too advanced for him, but he was motivated to test his abilities nonetheless. I wanted to give him the freedom and encouragement to try.

The other mother watched his attempt. “How old is he?”

“Three and a half,” I said.

She took that in quietly. “Is he yours?”

“Yes.” I flashed a smile.

Internally, I paused. Is he mine? That’s the second time I’ve been asked at a playground if this little boy genetically belongs to me. It seems people often assume I must be a caregiver – someone hired to look after this little chap with clear disabilities.

I really didn’t know what to say, other than the obvious. Yes… he is mine.

Yes… this is my world.

Yes… I am doing sign language to my son.

Yes… he is different.

But he – and I – both long for him to fit in. For there to be a space for him in this world.

I was grateful for the parents who gave us space. Who gave my son the chance to try something beyond himself. Who waited patiently while their able-bodied children were anxious for their turn.

It’s such a strange set of emotions. As time goes on, I get used to it. Yet in some ways I don’t.

Two people have seen me in the past week and asked the same question. “When will he eat?”

It feels like a time warp. Time passes. People assume after a period away that Cayden will have grown and developed new skills. In some areas, he has. But often those skills are small and not blindingly obvious to casual observers.

At nearly four, he is still bottle-fed milk every three hours. No, he does not drink water. He has four spoken words. We still spoon feed puree only into his mouth.

The past few months have been a season of huge reflection for me. I think I have now come to terms with having a son with multiple disabilities. I have recognised he may never read or write. I wonder if he will ever speak a normal or complex sentence.

I have also come face to face with my own limitations. I have had to throw away all developmental goals (shh… don’t tell our multitude of specialists) for the simple goal of… living.

With additional hours at a special needs kindy, I have been able to move past just barely surviving each day. Now, I am at least living… some / most days. But there is no room for any extra. At the most basic level, I can get through the day. I can bottle feed my child, change his nappies, sign some words to him, take him to swimming lessons and horse riding for the disabled, spoon feed him and cook and puree food for him. I can read to my other child and do one on one time with him every evening playing board games to make up for the very unbalanced amount of attention his younger brother gets. I can cycle my older son to school, so we both get fresh air and exercise (not that he needs it though!), cook meals and manage the washing. I can wipe the innumerable number of spills and clean pencil marks off the floor and walls.

I can keep more than a hundred plants alive that provide us with limited fruits and vegetables. (I read research that gardening helps very stressed women. Let’s just say I took that to heart. I’ve created a “jungle” in our small yard as a result.)

Life moves on. Some of us don’t. The seasons change but it feels like our areas of struggle remain.

I am learning to accept the challenges of today. I am learning not to expect too much of tomorrow. I am learning that it is okay to pause for a few seconds; a few minutes; to let the explosion of greenery and flowers I’ve created around me soothe my soul.

I’m learning to just let each day be what it is. I feel guilty for not doing goals and teaching Cayden all these basic skills he must learn – but I recognize I simply don’t have the energy to work on any of those anymore this season. I have practiced his hearing aid twice this week, because an upcoming audiology appointment will demand it. I have also read communications from his neurologist, audiologist, ophthalmologist, early intervention teacher, education support worker and GP this week. (Feel free to ask me about the clinical mice trials looking into the GnrH hormone replacement therapy they are hoping will transfer over to humans and repair cognitive function in those with Downs Syndrome. Our neurologist wants me to keep up to date with the research. Just the normal light reading).

I don’t know if it’s okay to just enjoy the small things, like taking Cayden for a bike ride, to a playground and for a swim lesson today. It’s not fancy. None of those will make a huge difference to our lives long term.  

But in this season, it’s enough.