Author reveals why she struggled to cope with her son’s disability after he had meningitis
‘WATCHING my little boy Wilfie stumble and fall as he ran out of school, I wanted to burst into tears.
This wasn’t a one-off, down to getting overexcited or tripping over his shoelaces, in fact it wasn’t at all uncommon for Wilfie to fall over.
And every time he did, it broke my heart – even when he smiled and dusted himself off – as it was just another reminder that my son wasn’t the same as everyone else.
The minute I found out I was pregnant, I couldn’t wait to meet my firstborn child and feel that first rush of love as my perfect little baby was placed on my chest.
My husband Nick, now 47, and I had even decided on a name: Wilfie, after the poet Wilfred Owen.
But pregnancy made me ill and when I was diagnosed with pre-eclampsia, I was worried as I knew it could lead to serious complications for both me and the baby.
At 35 weeks, the doctors decided the safest thing was to induce me, and after four long days, on June 7, 2005, Wilfie eventually arrived.
But by then, I was so exhausted that when I held our 4lb baby son for the first time, I felt numb.
It wasn’t until we got home 10 days later that I felt my first surge of pure love.
But my happiness was short-lived.
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Just 24 hours later, Wilfie suddenly turned white and then red as I cradled him on the sofa.
We rushed to A&E and watched terrified as doctors worked on our tiny baby.
They didn’t know what was wrong, but told us he was very sick.
The next day, Wilfie was diagnosed with the bowel condition necrotising enterocolitis, which had led to septicaemia and meningitis.
The specialist said this could mean brain damage.
I burst into tears and sobbed as Nick held me.
‘It will be OK,’ he said gently and reminded me about his sister who has Down’s syndrome.
I’d always admired the way Nick and his family helped her feel so happy and loved, and it gave me strength.
Wilfie was admitted to the neonatal intensive care unit and I’d arrive every day at 9am and stay till 9pm.
Nick had to go back to his job at a mortgage company, but rushed to be there in the evening and at weekends.
Wilfie wasn’t able to digest milk so, horrifically, doctors had to starve him – it went against all my motherly instincts to allow his skeleton-like body to be attached to a drip, tubes and machines.
Eventually, he was able to take tiny amounts of milk and started to gain weight.
We were allowed to go home after a month, and by December, when Wilfie was six months old, he started to look like any other thriving baby.
Then at a check-up just before Christmas, the specialist asked if he was sitting up.
When I said no, he explained that the meningitis must have damaged his muscles, causing mild cerebral palsy.
My world came crashing down again, as I was told he might struggle to walk.
But life had to carry on.
Our way of coping was to channel everything into Wilfie’s physiotherapy, almost thinking that if we tried and believed hard enough, we could overcome the cerebral palsy.
I went back to work as a copywriter a couple of days a week and when I wasn’t at home, my mum Eve, 72, helped Wilfie do his physio every day, too.
And Wilfie did walk. I remember his first faltering steps at 18 months old.
Nick and I held out our arms to encourage him, and as Wilfie realised he could do it, he laughed and toddled between us for an hour while we watched proudly with tears in our eyes.
In June 2007, when Wilfie was two, Alex was born.
My pregnancy was straightforward, but I felt guilty when Alex was placed in my arms and I felt that instant rush of love that I hadn’t experienced with his brother.
Wilfie adored having a sibling, and for the next few years life was hectic but lovely.
It wasn’t until Wilfie started school in September 2009 that I began comparing him to other children his age and noticed he was different.
Every day, he’d run out of school with his friends and fall over.
As I kissed his grazes better, I was crying inside.
It was the same when he played rugby over the next few years.
It was horrible to watch from the sidelines as time and time again his teammates beat him to the ball.
While it just seemed to make Wilfie more determined, it ate away at me inside.
Why couldn’t my little boy do what his friends could?
Outwardly, Wilfie didn’t look disabled – he wasn’t in a wheelchair – but I couldn’t shake off the resentment that I’d been cheated out of having what other mothers had.
However, I felt I couldn’t talk about it with my friends, especially as my best mate has four children, one of whom is really poorly with a neurological disease and another is autistic.
I knew I should have been grateful Wilfie was playing sport at all.
Luckily, Nick was really supportive, as he shared some of my feelings and my mum would gently remind me to keep battling to make sure Wilfie got the care he needed, even if his condition wasn’t as severe as some other children’s.
It was sometimes hard to see my boys together as they were growing up, and it often made Wilfie’s disability seem even more apparent.
When he was six, we were at the park and four-year-old Alex was swinging by himself, but Wilfie couldn’t do it.
I encouraged him to keep trying, even though it was heartbreaking to watch him fail.
But just as I couldn’t bear to watch his frustration any more, he suddenly pushed himself off and began swinging.
His face lit up and we all cheered.
It was moments like this that kept me going.
A few months later, Wilfie had a growth spurt and a cast was put on his leg to strengthen his muscles and stretch them.
In some ways, for me this helped, as it made people realise he was different and somehow justified how I was struggling to cope with the way I felt.
The real turning point came a few weeks later when Wilfie’s rugby coach asked me to give a talk at the Bath Rugby Foundation Awards.
I didn’t know if I could stand in front of 300 people – including disabled children and their parents – and talk about disability without feeling like a fraud.
But as I spoke about how hard it was to watch my little boy try and fail to win every week, and then the joy when he once made it over the line first, I was very emotional.
I got a standing ovation and felt a huge moment of validation.
Yes, Wilfie only has a small disability in the grand scheme of things, but that doesn’t make it any less real – for him or me.
And while I know he will never be an Olympic sprinter because of his cerebral palsy, now when I look at Wilfie and Alex, I see two happy little boys who will always be ‘perfect’ to me.'
Blind by Cath Weeks (£7.99, Piatkus) is