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.

Toby

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.

Toby

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.

Toby

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.

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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. Toby

 

 

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Yvonne NewboldYvonne Newbold named by HSJ as a Top 50 Inspirational Women in Healthcare 2014
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My Excellent Teacher
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6 thoughts on “My Excellent Teacher

  • August 17, 2016 at 7:19 pm
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    He sounds like an amazing character, very lovable and of course very loved. Don’t think anyone who hasn’t been through it can imagine what it must have been like for you and others who have come so close to losing your child. So glad you’ve been able to enjoy life with him for so long, and that you’re still taking one day at a time. That’s probably what we should all do to be fair; no-one knows what’s around the corner. Your spirit is amazing, as is your generosity in how much you have helped others along the way. Hugs to you xx

    Reply
    • August 19, 2016 at 1:15 pm
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      Thank you Steph, what lovely things you’ve said, you actually managed to make me a little bit teary! Our family life has been so extreme at times, and I look back and remember feeling so lonely, so isolated and it was very difficult for others to understand the complexities of how every little aspect of family life was affected and different to mainstream experiences. Now that Toby is older, and that my circumstances have so radically altered, I just want to do whatever I can to reach out to parents who may be feeling as desperate as I once was, and to let them know that things change and that it won’t always be this bleak. And you’re right, somewhere along the way I learnt to live in the moment and not worry too much about what might happen later on, or tomorrow, or in the dim and distant future! The best part of what I’m doing is the other people I’ve met online, the friendships I’ve made and the mutual support I’ve benefitted from. You are one of those very special people I’ve met along the way online, and look at all you do for everyone else too! Thank you for being there. Love Yvonne xxx

      Reply
  • August 18, 2016 at 9:15 am
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    What a beautiful post, you sound (And you should be) very proud of Toby and what he’s become. It sounds like you’ve had a real tough journey but still you want to help others. I think you have it sussed, you have to live life for the day, not worry about the future or the past but make each day now in the present, the best it could be. And if it turns out not so good then forget it and start again the next day. x

    Reply
    • August 19, 2016 at 1:20 pm
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      Thank you Raisie. You’ve said such lovely things in your comment and I really appreciate your kindness. And yes, I am incredibly proud of Toby! I’m also incredibly proud of my other two as well though, because life hasn’t been easy for either of them but they have risen to every challenge and now that I’m facing an uncertain future I just know that if anything happens to me they will both continue to make sure that Toby is well cared for and having as much fun as he possibly can! And your right too about how if things go wrong there’s always tomorrow. Thank you for stopping by, reading this post and taking the time to write such a heart-warming comment. Very best wishes, Yvonne xx

      Reply
  • January 14, 2017 at 6:13 pm
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    Wow. How beautiful his life must be with so much love from his mum. He sounds like a vibrant, loving character. I’m sure you are extremely proud of him!! You are so inspiring and i hope that people can learn from you and Toby about life and what real love is about. What a beautiful story.
    Much love xxx

    Reply
    • January 16, 2017 at 1:41 pm
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      Thank you so much for stopping by and for reading this, and especially for saying such lovely things! You are so right, Toby is a vibrant character, he’s like a whirlwind force of nature and yes, I’m immensely proud of him and of the way people around him just seem to warm to him, which is wonderful. Your kind words are so appreciated, thank you again. Very best wishes, Yvonne xxx

      Reply

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