Did you celebrate moments as a parent when you realised you didn’t have to help your child to do something anymore – when all your hard work, consistency and patience paid off and your offspring showed signs of becoming a functional, capable, socially integrated person and developed skills of independence? I’ve had those moments; those little wins that gave me permission to take back some of my precious time that I’d given away so willingly to help my little human flourish. I’ve had those moments, and I cherish them dearly, because they are few and far between.

I celebrate Mackenzie every single day. I celebrate and praise all the wonderful things she can do. I’m a glass half full kinda gal. It’s a natural disposition, I think. Like…I was just born this way, maybe? I naturally see the joy, light and positivity in everything, even when the reality is a little bit shitty. My positive outlook sometimes clouds my judgement and perception of reality and it’s a challenge, at times, to see the Truth. I remember when Mackenzie was a newborn and she was yet to be diagnosed. I believed I had this perfectly formed tiny little lady to cradle against my heart and share with the world and her dad kept saying “She looks sick. Something’s wrong with her”. I was horrified, deeply hurt by his view of his own child and scoffed at his perception. How could he not see what I saw? A perfect daughter that came in a tiny package, with large black eyes, button nose and delicious eyelashes. I doted over her beauty and all he could see was illness. But he was right. She was sick. She was very sick. And days later she was airlifted to hospital for life saving treatment and a diagnosis that would change everything.

Some years later I looked at photos of her from those first few weeks and I remembered his words. And in that moment I saw what he saw. A fragile newborn that was underweight, fatigued and yellow with jaundice. But I didn’t see it through my smitten new-mum eyes. I couldn’t see it through my glass half full heart.

As a thriving, healthy 10 year old there are lots of things Mackenzie can do, but there is more than she cannot. And whilst I’ll continue to celebrate the little wins (like when she pulled her socks out of the drawer, unfolded them and independently put them on this morning) I’ve become more aware of all the things I do to help her function in this world. I’m living a life for two people. I shower for two people, because she cannot shower herself. I clean up for two people, because she cannot clean up after herself. I wipe the noses of two people, because she cannot wipe her own nose. I dress two people, because she cannot dress herself. I put dishes in the sink for two people, because she cannot do that for herself. I watch the earth with deep concentration when walking in the community, because she cannot see obstacles for herself. I walk with her attached to my arm, my arm never free to be on its own when she is with me, because she cannot mobilise in the community on her own. I pack bags, make lunches, prepare food, wash hair, make beds, dry hands, wipe faces and throw out food scraps, I put clean clothes away, fold pyjamas on the end of the bed, brush hair up and plug devices in to recharge.

I’m living a life for two people. My actions always repeated, first me, then her. My thoughts and actions are constantly several steps ahead, my attention always drawn out to the needs of another.

In my commitment to supporting my daughter I’ve become an excellent planner. I’m organised and clean, tidy and consistent. I’m a routine freak. But things take twice as long when you’re doing everything for two. So we rise a little earlier and sometimes arrive a little late. I’ve stopped apologising for lateness - living life for two people is time consuming. In apologising for being late, I’m apologising for Mackenzie’s needs, and I’m never sorry for that. I’ve been forced to slow down in some ways and speed up in others. I do more planning and less actioning. All that stuff that needs to be done, it can wait. It’s not important to do it right now. We rest in the afternoons and stick to a stringent routine in the mornings. We do as little as we need to get things done and the slowing down has allowed me to be more mindful, more present. I continue to celebrate the little things, and at times allow my heart to wonder to future days. It’s hard to see the prospect of her becoming completely independently. Maybe I’ll be living a life for two for the rest of my days…it’s hard to know. Sometimes I’m tired of it. I’m tired of the therapy, the education, the training, the support, and all the help I offer. Sometimes I want to be able to speed walk through the shopping centre to get in, get what we need, and get out, with Kenz running beside me. I don’t want to take my time. Sometimes I just want to get shit done. But I guess that’s what she’s here to show me…this slow paced way of life. Where all the stuff can wait and there really is no rush.

For all the parents out there living life for two people, I see you. It’s life consuming and time consuming. It’s hard. I don’t have any insightful offerings for you with this blog. Just a special needs parent to special needs parent knowing – a deep awareness of your challenges and an arm around your shoulder as you wipe your 8-year-old’s bottom and change their nappy. I know we didn’t think it would be like this, but there are many magical reasons for why it is. And I hope you can at least see one of them and I hope it gives you everything you need to keep living this life for two.

Tanya xx

Image: Older man smiling with a younger man who has Down Syndrome

Image: Older man smiling with a younger man who has Down Syndrome

Tanya Savva