The day Toby was born, I knew very little about disability, apart from a vague notion that things like that only happened to other people. Suddenly, I was on a steep learning curve, and I needed an excellent teacher. Luckily nature had provided me with one, although I couldn’t see it at the time.
All I could see was a dark, horribly bleak future for my beautiful, fragile baby boy, and I was overwhelmed with sadness and fear for him. All the primal maternal instincts kicked in just like with any other mother except more so – it felt like a mother-love emotional overload, with profound love and protectiveness highlighted in blindingly bright 3-D Technicolour, but suddenly devoid of all the warm, cosy feelings of joy and delight, hopes and dreams for my precious baby’s life.
People kept telling me how sorry they were as if something terrible had happened to me but it hadn’t. It was Toby who had been given a heart-breaking prognosis; it was Toby who had been robbed of all the future opportunities in life that should have been his birthright. I felt desperately sorry for him, heart-broken beyond words, but I never felt sorry for me.
As I said, I hadn’t noticed the excellent teacher I’d been given. I was so consumed in this black cloud of despair that Toby had to resort to desperate measures to make sure his mummy was kept on her toes, sitting up and facing the front. His teaching methods were probably a bit too full-on, and he repeated the same lesson with alarming regularity over the next several years, but it was a very effective lesson. He would just stop breathing and turn blue. Lesson Number One: “Mummy, you must never take your eyes off me”.
But he taught me more than that. I learned to stop worrying about his future when he might not even be with us for more than the next few minutes. I learned to take one day at a time as, time and again, I would will him to live as we fought together for his survival as he lay in an intensive care cot with leads and lines and goodness knows what else invading his tiny body. He taught me how to spot the early warning signs of respiratory distress hours before doctors could see anything wrong. He also taught me how to confidently fight his corner and effectively challenge the medical profession when they were thinking of calling it a day.
21 years later, and I’ve never stopped learning. His health is much improved and against all the odds he learnt to walk at the age of 10. He is a vibrant, gregarious, funny, affectionate, extrovert life-force of a young man now, but with the cognitive ability of a toddler. He is also determinedly curious – when he wants to explore he can wreck a room in about 12 seconds. That first lesson he taught me about never taking my eyes off him still comes in very useful.
He also has extremely limited spoken communication skills, so instead he’s taught me to read his body language and facial expressions like a book. He’s shown me how many good people there are in the world, and he’s taught me who I can trust and who I can’t. He’s changed my entire perspective on what really matters in life, he’s helped me slow down so that I notice and celebrate the little things that really matter.
Through Toby I’ve met dozens of wonderfully caring good people, people who have worked with him and made a significant difference to his quality of life. Over the years his team has changed, people come into our lives and then move on, but many of them will never be forgotten and will always have a special place in our family memory.
In those early months I was so frightened that Toby’s quality of life would be impoverished. It’s true that he has a very different set of experiences and opportunities to those of most people of his age, but he has a fabulous life. He has a gift of milking the most fun from any situation, and in so doing, he often reaches out and makes strangers laugh and smile with him.
Of course I still worry about his future, and who will love him when I’m no longer around. This became much more relevant over the past three years since I was diagnosed with cancer which has now spread to my bones. Toby moved into a new residential care home a couple of months ago, and we are now both learning how to manage a whole new phase of his life. Again he is leading me – he has found his feet, he is building great relationships with the staff and the other residents, and he is happier and more settled than I ever dared to imagine. It’s still early days, but Toby’s strategy of teaching me to take one day at a time has always worked incredibly well, and that’s what I’m doing at the moment.
Undoubtedly, Toby’s arrival changed my life, but isn’t that what any newborn baby is supposed to do? Every baby has a life-changing effect on their parents, that’s the way it’s meant to be. However, for our family, Toby’s difficulties have at times made our lives incredibly hard. His first six years were dominated by long hospital admissions, and we nearly lost him countless times. The toll this takes on family life is indescribable. Balancing his round-the-clock care needs with being able to give his brother and sister as normal a childhood as they deserved has been near impossible. There have been days when I didn’t know how we’d make it until bedtime, and sometimes just getting out to the shops to re-stock the fridge has felt like a military expedition. But none of that is Toby’s fault. He also taught me the importance of seeing him a a somebody, an integral part of a loving, close-knit family, rather than as a long list of medical conditions and diagnoses.
Toby will always have to cope with his severe disabilities and medical conditions, and consequently his life choices will be limited. He will never marry, graduate or aspire to succeed in a glittering career, but he still has a fabulous life, one with meaning, value and purpose, and one he is living to the absolute max. More than anything else, Toby has taught me how the human spirit can triumph and flourish no matter what.
I still wish with all my heart that, for his sake, Toby hadn’t been born with so many difficulties. His life would have been much easier and more conventional. It hasn’t been easy for either of us, and I wish he hadn’t had to go through everything that he has had to face. More than anything else I wish with all my heart that Toby could talk – his face is constantly alight and alive with personality and joy – if he could talk he’d probably never let anyone ever get a word in edgeways.
He has taught me to accept what is, not what we’d like it to be. That’s one lesson that’s come in very useful since my cancer diagnosis. He’s shown me that when things are at their worst you have two choices; you either wallow in it or you get on with it. I am so grateful that Toby pulled me out of that deep black hole of helplessness and hopelessness I found myself in all those years ago, and showed me instead that life is for living. He has been bursting with life from the moment he arrived.
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