With the busyness of life, it’s so easy to get wrapped up in what we are doing. And focusing on our problems. And the things that aren’t going as well as we’d like.
Traffic. Money problems. That upsetting disagreement you had with your colleague. The roof leak that’s causing internal damage to your house that you need to get fixed.
We all have them.
This is a post about perspective. And luck. And gratitude.
In this post, I share why, as the mother of a child with severe disabilities, I’m grateful for my body and my problems and my life. And why I hope you are too.
What happened this morning + what prompted this post
One of the mothers in the parents Facebook group for the genetic mutation (STXBP1) that my daughter Mylee has posted this graphic.
It shows the ‘mutational spectrum’ of the piece of genetic code of her DNA.
Basically, all the fucked up things that can go wrong with the minuscule (but critical) piece of genetic code.
In other words, the teeny, tiny issues with the teeny, tiny code that is responsible for all the profound issues our kiddies have.
The developmental issues, and the severe seizures that go with it.
It’s so easy, with perfect DNA, to take things for granted
What hit me when I saw this was how, for most of us, while focusing on our busy lives, we soooo take for granted how EASY things are for us, with our near perfect DNA.
We can walk. Talk. Create things. Have jobs. Build careers. Have relationships. Marriages. Babies. Build lives.
But one tiny mutation, on one tiny (but critical) gene can seriously fuck up a child (who goes on to be an adult) and their potential to move and communicate and live without pain. Let alone create what they want in their lives.
I love my daughter. More than words will ever be able to explain.
She’s delightful. And I would not have her any other way. Except, God willing, to have her miraculously develop the ability to develop.
And to stop the god-awful seizures.
But that’s not the point of this post.
The point is that the challenges she has, and that all the other kids we now see as a disabled family, have made me realise how fucking phenomenal my own body is.
You and I got lucky when the chromosomes we got from our parents connected. Our genetics, that tied up nicely upon conception, enabled us the potential to walk and talk and think and process and do and create more or less what we want with our lives.
The randomness of it got me this morning. And the realisation of how I take my natural ability to function for granted.
So today, I’m feeling grateful. And incredibly humbled by those who, through no fault of their own, live lives unfairly limited by the hand they got dealt.
Those people we see in the malls or on the streets in wheelchairs.
The ones who look different and who are clearly mentally impaired.
The ones that terrify us because we don’t know what to do with it.
It’s difficult being the parent of a child like that. Difficult because of grieving the child you thought you were having.
But it’s equally difficult knowing that when they’re little, they’re cute.
And knowing they are going to grow up to be big disabled adults and confronting for people. Beautiful souls trapped in bodies that terrify people.
What I wished people knew
Somebody said to me when Mylee was young that it must have been hard dealing with questions of ‘why me?’
I never thought ‘why me?’
I thought ‘why?’ but it never felt personal.
What was hard – and what made me angry – was sitting in the children’s hospital neurology ward like a zombie, reading Facebook posts to try to distract myself from the terror and the pain I was going through watching mine and my daughter’s and family’s life change forever – and reading people’s innocently-posted complaints about bullshit things like sitting in traffic.
And how their curtains they were getting made got made 1cm too short, and they’d have to wait another six weeks for them to be delivered.
Of course people are free to get mad about whatever frustrates them. But while they’re spending their time and energy on complaints about stuff like that, they’re missing their lives.
They’re missing how easy they have it, compared to those who are trapped in bodies that don’t work.
They’re missing how healthy they are.
And how easy they can make and execute choices for what they want for their lives.
What parents of kids with severe disabilities want
I didn’t want – and I don’t want people to feel sorry for me. Or for Mylee.
Pity doesn’t help anyone.
But what I did want (and what I do want) is for people to appreciate their lives.
I sure as heck appreciate my life and the luck I got dealt with my genetics.
And I’m grateful for the soul I got delivered that has taught me so much about living.
I hope you appreciate the luck you got dealt too.
….If only for a moment, until you get on with your busy life and creating what matters to you, which you absolutely should do, while forgetting all the people who don’t have that luxury.
People with severe disabilities are unsung superheroes of our world.
If only we had the opportunity to access them and their beautiful souls more often.
Big love to you, and your amazing body.