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11/02/2020

From a Rett Dad on Valentine’s Day

By Andy Stevenson

It only took a few minutes after my daughter was born for the panic to begin. The irrational fear of my daughter getting ‘her first boyfriend’ hit me like a hammer. Knowing what my mates and I were like, as teenagers did nothing to allay my fears.

Beth was my first child and soon these fears died away as I got to grips with being a new dad. Like any parent knows there is nothing like the love you feel for this little bundle.

Every now and again though, the fear came back, how would I handle it when the inevitable happened. Little did I know then that there were far greater things to worry about.

When Beth was diagnosed with Rett Syndrome, knowing that Beth would never have the chance to have a boyfriend, get married and have her own children was devastating.

Whilst we worry about all the things life is going to throw at our children, we also take it for granted that good things like love and relationships will happen for them at some point in the future.

When all of that is snatched away from us, from them, it leaves us with a living bereavement.

We adjust and try to cope with this new reality, something you’d never even considered, something beyond your worst nightmares.

With the medical problems that come with Rett Syndrome, we become hyper-vigilant all the time, waiting and almost expecting the worst to happen.

It takes its toll on us and our immediate families but imagine what it feels like to be her or him, trapped in a body that doesn’t work.

As the years went by and Beth’s symptoms became worse, I inherited another daughter, Amber. Both of the girls are young women now, Amber is 24 and Beth 20 next month.

Andy and Amber

They have both had complex medical problems for many years now and they handle them with dignity and grace. I think back to my initial anxieties when Beth was born and I wonder what I was worried about.

Despite the fact that they can’t walk, speak (I don’t use the word, ‘communicate,’ as they can both let me know what they want), have epilepsy, have endured scoliosis surgery (Beth) and a gastrostomy (Amber) one thing breaks my heart more than anything else.

They will never know love and intimacy, in the same way most of us know it. I watch them smiling and flirting in their own way with people passing by and it’s a wonderful but sad thing.

It reminds me that deep down inside they have the same feelings and desires as anyone else.

I have always believed in the power of research to change lives. I still hope there’s time for them both to experience romantic love and have that special person to share their life with. I’m not giving up on that and I believe both of them expect nothing less of me.

So enjoy Valentine’s Day and cherish the special person in your life. And you’re a dad of a teenager who doesn’t have Rett, try to relax and enjoy the fact that you have a child able to experience life’s greatest gift.

Beth at her school prom