Single template

Unconditional Love for Children in Unexpected Moments

My daughter Moy Moy doesn’t speak at all. She is 27 years old, has quadriplegia and is completely non-verbal. But that doesn’t mean she doesn’t communicate.

This morning I woke at 5 am because Moy was making sounds. They were persistent sounds of distress, but it took me a while to figure out what was bothering her. I changed her diaper, but she was still fretful. I turned her over on her side, but the little noises continued. A new bib beneath her cheek to replace the damp one didn’t help either.

It was a chilly morning and as I tucked her quilt more snugly around her, I realised that her right hand was sticking out from under the blanket. The rest of her body was warm as toast, but that one small hand was like a block of ice.

I lay down beside her again, took her hand under the quilt and held it in both of mine, gently stroking it until the cold ebbed away and the warmth returned. As it did, her whimpering grew less and less until finally it stopped altogether. Her whole body relaxed, and Moy Moy fell back asleep.

I know it doesn’t sound like much. Yet, I felt so unreasonably happy all day. That little moment of release back into slumber — which I had caused to happen — filled me with a sense of purpose and peace and satisfaction in my role as her mother. I felt competent. I had figured out the problem and I had solved it. It’s not easy to be useful to Moy Moy. Her needs are so minimal and so elemental we all take them for granted, including, perhaps, she herself.

We feed her, we bathe her, we get her dressed. I take her for walks, I read her novels and poetry. Occasionally she acknowledges the activity (she likes a bath; she enjoys riding in the car, she seems to listen when we sing to her), but most of the time she simply accepts our ministrations passively and without reacting. So, like most parents of children with special needs, we don’t expect results or rewards. We don’t wait for the positive reinforcement of a smile or a sigh of contentment and we know there isn’t likely to be any visible sign of progress. Her tummy is filled, her bowels are emptied, her hair is combed, her shoes are tied.

Again and again and again, day in, day out. She doesn’t really notice and, most of the time, neither do we. It’s like breathing. We do it to stay alive.

It takes a moment, like the one that morning, to remind us how much more is going on, how important we really are in her life, how desperately we love her and how deep are the feelings she inspires. The happiness I have been flooded with all day (it’s 15 hours later, as I write this, and I am still feeling tender and full of affection) is real. She makes me feel that way.

It turns out that it’s not mechanical or mindless; she’s not just a body needing to be washed and fed and put to bed in spite of how it feels at times. She’s my daughter and she needs me. Whether she acknowledges my presence or not, whether she notices when I take care of her, whether she is aware of all the time and effort and energy I put into keeping her fit and healthy and alive, or not, it’s crucial and it makes a difference to both of us.

We all need meaning in our lives. We long for it and, if it’s not obviously present, we create it. The hardest part about taking care of Moy Moy is not the tedious routine or the physical exertion or the getting up in the middle of the night; it’s the absence of connection. Parents of children with special needs learn early the essential habit of living in the moment because considering a lifetime of such lack of response is too painful to consider. But each moment is only a moment. Anyone can live through a moment.

That’s what we do as parents, that’s what we sign up for when we say yes to a child.  There are no guarantees, no happy-ever-after promises, no return-if-unsatisfied policy. Unconditional love for children — for anyone — is complex. Unconditional love for children with special needs, a little more so. But those years and years of moments lived disappear like magic with one small, frozen hand melting into warmth, sleep and gratitude. We are easy to please.

Join the discussion…

Your email address will not be published. Required fields in red.