Changes
by Niki Shisler
Every child changes you. Whether it's the complete paradigm shift that comes with the first, or the gentle stretching of your heart with the fourth, nothing on earth has the profound and lasting impact of a new baby. Already a mother of two, when I discovered that I was carrying twins I expected change. I expected it to be hard having 3 children within a year (Evie was exactly a year old when the boys were born). I expected to have my life turned upside down, to be challenged physically and emotionally, I expected the unexpected. I didn't have a clue.
Five years on and life has mellowed considerably since the world-spinning events of the early years. For a long time all I could do was hold on, with no sense of direction or destination, to the reins of life. It was high drama all the way and, for all the terror and anguish, it was exhilarating. The thrill of survival keeps you going and the effort of survival keeps you occupied. There is actually some liberation in this suspension of the duties of everyday life, and there is satisfaction in rising to life's most extraordinary challenges. But eventually the hurricane passes and you stand and survey the unrecognisable landscape of your life.
Everything was different. Not necessarily worse, or better, just very, very different.
My understanding of the world has broadened immeasurably. It shames me now when I realise how woefully ignorant I was. Growing up, segregation was normal for people with disabilities. A local family that I knew had a disabled son who lived in a 'home'. His mother would visit monthly and we were sympathetic about the 'burden' she carried. Today I am shocked by my younger self. Did we never ask after the boy? How was it so easy to accept without question that an institution was the right place for this child? Disability was invisible to me. I knew, in theory that it existed. I'd seen the parking spaces and the specially adapted bathrooms and, as a socialist, paid lip service to the notions of equal rights and opportunities, but I didn't know any people with disabilities and there seemed to be no overlap between my world and theirs. Sometimes I would see on TV, or read about in the newspaper, a family struggling to raise their disabled child (and they do 'struggle' in the media, it is always hard) and I would note that I could never live like that, that I would never have the strength or patience, as if these people, these families, were somehow a different breed. They were the kind of people that these things happened to; and I was not.
So, into this strange new world I was dropped, ignorant, anxious and utterly unprepared. This is the legacy of a society that keeps people with disabilities at arms length that houses and educates them separately. I was afraid; the little glimpses of disabled life that I had been shown terrified me. It is this fear that leads to countless disabled children being left in institutions; when parents of children with special needs are portrayed as superhuman, is it any surprise that some feel unequal to the task?
The mundane reality of course is that there is nothing special or different about parents of children with disabilities. We are ordinary mothers and fathers. Some are good parents, some are not. We are no more patient or selfless than any other parents and like most, sometimes we rise to the occasion and sometimes we don't. I found that these things did happen to people like me, there was no benign god carefully ensuring that only wannabe martyrs were chosen for this path; even the intolerant and impatient got picked.
The information deluge started immediately, no time for gentle introductions and beginner classes. Within weeks Danny and I were discussing gastric surgery, neurology, carbon-dioxide levels and a host of theories and therapies. We scoured the internet and talked to endless doctors. I learned very quickly to trust my own judgment and my confidence as a parent grew rapidly. I had, like most people, been in awe of doctors but now the fundamental instinct to protect my children was so strong that I took nothing for granted. I have seen this empowerment many times now in parents; most doctors welcome it and work in partnership with parents, they have learned that only the foolhardy dismiss a mother's eye.
I also found a community. In hospitals, therapy offices and, most of all, online, a vast network of parents sharing experiences, giving advice, offering comfort and friendship. Co-travellers on this extraordinary road, who could sympathise with the frustrations, share the celebrations and even laugh at the sometime absurdity of life. The camaraderie can be wonderful and uplifting, from the brief smile from another wheelchair-pushing mother as you pass in the street, to the immediate bonding and sense of community that develops in the disabled section of the theatre, I have been truly blessed by this companionship, it has been one of the great gifts of the past few years.
Taking one day at a time has become the only manageable strategy. It's an idea that I have paid lip service to for a long time without ever really understanding what it meant. Now though, looking back is too painful and looking forward too frightening. Behind me is loss and a lot of heartache. Not just Theo's death, we lost Felix's babyhood too; he was 18 months old when he finally came home from hospital. And there were the dark days, too many to count, where I stood praying by his bed, willing him to stay alive as bug after bug stretched his meagre resources. Those early days were desperately hard, I was almost numb from the relentless heartache, and even now I feel disconnected from the person who went through all that. Looking ahead brings its own difficulties. I have huge fears about Felix's future; will his condition progress? How many years will I get? Will he be happy? Of course, as a parent, I worry about all my children but with Felix the fears feel bigger, more real.
Here, now, today though, life is good. My children are happy and safe; Felix has a good life filled with love and joy. Today I can protect him, enjoy him, watch him thrive. I see him goofing around with his sister, silly songs and funny faces and both of them giggling and squealing with delight. I am overwhelmed by a sudden wave of love and pride; I know how far we have come, I know how much this tiny moment really means. And there's the gift; take this joyful moment, live in it, no past, no future, it is what it is right now, forever.
Happiness is a choice. There are, of course, difficult times in every life. We all know what it is to be frustrated, to experience loss, to be overwhelmed by problems; I don't deny any of this. But I have learned that even in the darkest times I can find hope and positivity somewhere. I am no Pollyanna, not unless she grew up to be a short-tempered cynic, but I do believe that life is too precious to waste it on being miserable. I have learned to embrace the journey, with all its bizarre twists and to trust that, somehow, the bigger picture of my life makes sense. In my mind the universe is controlled by a fundamentally benign force whether God, nature or simply fate. This journey has for me been as much spiritual as physical and intellectual; prayer and meditation (or talking and listening) have been an essential part of it. I have faith that I am exactly where I'm supposed to be, that life is unfolding as it should.
I am changed. I am changed beyond anything I could have conceived when I lay on an examining table, watching the sonographer point out one, two little heartbeats on the screen. I think I grew up somewhere along the way, and that was probably long overdue. I am stronger and more confident; I know that I can survive whatever life throws at me. And I know that no matter how hard life becomes, all things pass. The sun always rises again and sometimes all we can do is hold on and wait.
