Did you ever rejoice as a parent when you realised you didn’t need to help your child with something – when all your hard work, consistency, and patience paid off and your child showed indications of maturing into a competent, capable, socially integrated person with independent skills? I’ve had those moments; those small victories that allowed me to reclaim some of the time I’d given so freely to assist my tiny person to develop. I’ve experienced those times, and I treasure them since they come infrequently.
Every day, I thank God for my daughter, Kate. All of the beautiful things she can achieve are celebrated and praised by me. I’m a believer in seeing the bright side of things. I believe it is a natural propensity. As an example… Maybe I was just born this way? Even when the truth is a little bleak, I instinctively find pleasure, light, and happiness in everything. My optimistic approach might obscure my judgement and view of reality, making it difficult to perceive the truth at times. Kate was a newborn at the time, and she had yet to be diagnosed.
I thought I had this wonderful young princess to hold against my heart and share with the world, but her father kept repeating, “She looks unwell.” Something isn’t right about her.” I was incensed, horrified, and mocked by his view of his own child. How could he be blind to what I saw? With huge black eyes, a button nose, and lovely eyelashes, she was the perfect daughter in a little package. I was enamoured with her beauty, but all he saw was disease. He was, however, correct. She was in a bad way. She was in a bad way. She was rushed to the hospital a few days later for life-saving treatment and a diagnosis that would change her life forever.
I remembered his remarks years later when I saw images of her from those first few weeks. And I saw what he saw at that same time. A frail infant who was underweight, tired, and jaundiced yellow. But I didn’t view it through the eyes of a besotted new mother. Through my half-filled glass heart, I couldn’t see it.
Kate can accomplish a lot of things as a flourishing, healthy 8-year-old, but she can’t do everything. And, while I’ll continue to celebrate the small victories (like this morning when she grabbed her socks from the drawer, unfolded them, and put them on herself), I’ve become more conscious of all the things I do to assist her in navigating the world.
I’m living two lives at the same time. Because she is unable to shower alone, I shower for two people. Because she is unable to clean up after herself, I clean for two people. Because she can’t clean her own nose, I clean the nostrils of two people. Because she is unable to dress, I clothe two individuals. Because she is unable to do it for herself, I placed dishes in the sink for two people. When I’m strolling around the neighbourhood, I keep a close eye on the ground because she can’t notice hazards for herself.
Because she is unable to mobilise in the community on her own, I walk with her connected to my arm, my arm never free to be on its own when she is with me. I pack backpacks, make lunches, prepare meals, wash hair, make beds, dry hands, wipe faces, and throw out food leftovers; I put clean clothing away, fold pyjamas on the foot of the bed, brush hair up, and charge electronics.
I’m living two lives at the same time. My acts constantly seemed to repeat themselves, first me, then her. My thoughts and actions are always several steps ahead of where I am, with my attention directed to the needs of others.
I’ve become an exceptional planner as a result of my devotion to helping my kid. I’m well-organized, neat, and consistent. I’m a creature of habit. When you’re doing something for two people, though, it takes twice as long. As a result, we get up a bit earlier and occasionally come late. I’ve stopped apologising for being late; life for two people takes a lot of time. When I apologise for being late, I’m apologising for Kate’s needs, something I never apologise for. In some aspects, I’ve had to slow down, while in others, I’ve had to accelerate up. I devote more time to planning than to acting. All of the things that need to be done can wait. It isn’t necessary to do so right now.
We take it easy in the afternoons and follow a strict morning schedule. We only do what we need to get things done, and by slowing down, I’ve been able to be more conscious and present. I’ll keep celebrating the small victories and allowing my heart to speculate about the days ahead. It’s difficult to imagine her being entirely self-sufficient. It’s difficult to say if I’ll be living a life for two for the rest of my days.
I’m not going to waste any time. Sometimes all I want to do is get it done. But I suppose that’s what she’s here to demonstrate… this leisurely pace of existence Where everything can wait and there is no need to rush.
I see you, all you parents who are living life for two people. It consumes a significant amount of time and effort. It’s difficult. With this blog, I don’t have anything insightful to give you. Just a special needs parent to special needs parent knowledge.