The Good Thing Is… Ted
“Nothing turns your life upside down like your first baby.” As a mother of four and grandmother of six (at that point), Mum knew what she was talking about – although none of us could have predicted just how true her words would become.
Following a textbook perfect pregnancy, with nothing more dramatic than some swollen ankles to deal with, my planned home birth went horribly wrong. It wasn’t ‘one of those things’, it was a prolonged evening of errors and poor judgements by two well-meaning midwives that had catastrophic results. Ted, my cherished baby boy, was born not breathing, almost beyond resuscitation, having experienced prolonged starvation of oxygen. This caused a massive brain injury and altered the course of all our lives forever.
None of the birthing classes or books you read prepare you for the eventuality of going home without a baby. Contractions, breathing exercises, gas and air, epidurals, C-sections, stitches, sore nipples, sleepless nights, babymoons, night feeds, pacifiers, sure. Waving your baby off, covered in wires, to a different hospital, unsure whether he’d make it through the night? Not so much.
Ted did make it through the night and many more after that (he just turned 8) and so life as a parent began with weeks of NICU visits and a lot of stress and anxiety. That was kind of the easy part though. If coming home without a baby is hard, coming home with a brain-injured baby is even harder.
Ted and I basically spent the first year crying. Turns out his brain injury was pretty bad (despite what I had convinced myself) and resulted in full-body cerebral palsy and a gloomy prediction of lifelong, serious disability. Along with epilepsy, reflux, spasticity and other associated medical ills, I can see why he was feeling a bit, well.. shit. That made two of us.
A black hole swallowed me up. Disability was awful – wasn’t it?
Surely there was no way any of us could have a happy life. I didn’t realise it at the time, but that’s the subliminal message we are fed at every turn. Disabled people are either ‘inspiring’ just by default of existing and leading a relatively normal life or they are objects of pity. I was fully prepared for a sad, difficult, medicalised life. Grey and bleak. No fun. No joy. No normality.
The first year seemed to affirm my fears. Ted screamed during most of his waking hours. I obsessively measured his head to see if It was growing or if his brain was withering away, kept long lists of the meagre amounts of formula he had managed. We had many trips to the GP and A&E. Physio replaced play dates, I saw more of the health professionals than my best friends and I often burst into tears on strangers in the park or on the bus. I fell into a deep grief – mourning the imaginary life I had created for us; weeping at all things we would never do. I fluctuated between wanting to run away and never return, to being so anxious that Ted would die that I wouldn’t let him out of my sight.
It was a dark time. Feeling desperately sad and lonely, as well as totally out of my depth, I found it hard to escape the feeling that I wasn’t cut out for this kind of parenting. In fact, I was the worst person this could happen to.
Or was I?
Hindsight is a wonderful thing and now I can see that I was exactly the right person. Or my experiences of parenting Ted have made me that way. Either way I have developed a strength and resilience that means I can get through anything. I have always been stubborn (although I prefer ‘tenacious’) and optimistic and those count for a lot when parenting a disabled child in a broken system.
Never one to be a victim, I soon realised I couldn’t change our situation, so I had to change my mindset. I could worry about what the future holds and what may never happen, or I could live in the moment and protect my mental health. I could cry and rage with the injustice, or I could forgive and move on (admittedly that’s easier after you’ve sued for damages and won).
I could focus on the missed miletones and all that Ted can’t do or I could learn to love my child for all that he is and help him do what he can. I can feel robbed of some of the childhood rites of passage I thought we’d experience or I can create my own with my now smiley happy boy. I chose to follow happiness. That doesn’t mean I am always happy, far from it. Toxic positivity ain’t my thing. I feel the full range of emotions but things are broadly positive. The good times always roll around again.
We have experienced all the things I once feared – a host of medical complications, tube feeding, mobility aids, blue lights to hospital with seizures that won’t stop – but life is full of ups and downs. Because the lows can be so low, I fully appreciate the good times when they are here. In my 20s I used to feel like something was missing from life and I wanted more meaning. That’s exactly what the universe has given me. That’s the thing about the universe, it never delivers in the way you expect!
I’ve been gifted a chance to experience something that not everyone understands. Parenting a child with a complex disability shrinks your life but makes you appreciate the small things. It gives you deep empathy for others and compassion for people having a hard time.
The positives are there, they just don’t look the way I expected. For a start, I didn’t have to go to soft play for the first five years of being a parent. We get unrivalled parking spots, head straight to the front of most queues, get to board aeroplanes by a different door avoiding the boring departure gate thing, have amazing views at festivals…
Ted is so happy and smiley, he makes friends wherever we go. The manager at the local Waitrose knows us and give us all kinds of perks when time are tough (Wine! Chocolates!). And I don’t think I would have ever appreciated a child’s laugh so much. It took several years for us to hear that sound and several years on, it never gets old. I get endless amusement from watching him work himself into hysterics at his own farts and my heart swells watching the love he and his sister have for each other.
I know now that not being able to walk is the least of anyone’s worries and you don’t need words for someone to make their love for you clear.
Against all odds, we are a happy family and nothing makes me prouder.