A special story for a special girl
Jul 18, 2016I hope you had a fantastic weekend. The sun is shining in England, and it's a very special day, so I wanted to share a special story with you today.
When our first child was born in 2005, we thought we were the luckiest people on the planet! The experience was perfect, she was perfect, the natural, drug free, home delivery was perfect.
I cut the cord and then Susan cuddled and bonded with this tiny new life for an hour or so. Then I got in the birthing pool (we had it installed in the sitting room in front of the fire) and Susan passed me this brand new little person. We played together in the warm water for ages.
It was a magical night. The world truly did change forever that day.
When our second child was born less than two years later, we expected it to be the same magical experience. It wasn’t. We were in the same room of our house. We had the same birthing pool. We had the same attitude. But it wasn’t the same at all.
From the moment Eliza was born Susan immediately knew something was wrong.
For the next few months a string of events unfolded that we were helpless to control. In fact, they’d been unfolding for many months already, we just didn’t know it.
For the first part of her life, Eliza always seemed uncomfortable, always struggling, always crying and never happy. She lost 50% of her birth weight and didn’t seem to be able to put any of it back on. Life was stressful, we feared the worst but hoped for the best, as we took Eliza for test after test to try and pinpoint what was wrong.
Finally, we were called in for the results of some recent tests.
After some light chit-chat, Dr Kumalla looked at us both and said ‘She has a very rare chromosome abnormality. It has affected her body in a number of different ways.’
‘Will she be ok?’ we both said at almost exactly the same time.
‘Well, the truth is, we don’t know.’ he said. ‘She may never talk, she may never walk, we can’t really tell you how long she will live. There’s no one else we can find with the same exact genetic disorder because it is so rare.’
So started a journey of coming to terms with something that we had simply not planned for, and in fact, had never even considered.
At first we told everyone. And generally, they struggled to know what to say, they told us how sorry they were and that we didn’t deserve it, and if there was anything they could do, just let them know.
We would say ‘Thank you.’
Gradually we talked about it less with other people. But those we did tell would respond in the same way and say they were sorry.
Now we would say ‘That’s ok.’
Eventually we completely changed the way we talked about Eliza. But when people asked, we would explain and they would respond in that familiar way and say they were sorry.
When we hear this now, we seethe inside! We feel sorry for them!
Fairly early on in this process of adjusting to something very different to our original expectations, Susan said something I’ll never forget ‘When we stop worrying about what we don’t have, we can start enjoying what we do have.’
I’m not even sure if she fully believed this herself at the time, but it was exactly what I needed to hear.
I think this is such a perfect way of dealing with the surprises life throws at us all.
It’s true, Eliza is not what we expected. She is far more than we expected.
I know, for many people, that’s a very difficult statement to understand. I think you have to know a child like Eliza – someone with learning difficulties, someone who is registered disabled, someone who is developmentally delayed .. someone who is not ‘normal’ – to really understand.
When Eliza was about three years old, a very good friend of the family said to Susan ‘You have been dealt a really bad hand, haven’t you?’ It was a statement of fact from their perspective.
‘We just don’t see it that way.’ Susan said politely and unemotionally.
They looked at her with that expression of ‘OH COME ON! You don’t have to pretend with us, we’ve known you for years!’
But Susan wasn’t pretending.
We wouldn’t change Eliza for anything.
On one of my calls just last week Sanna read out a quote that said in essence a person’s disabilities are part of their unique identity. And that description resonates with me more than perhaps any other I’ve ever heard or read.
It’s true, on a bad day, Eliza will challenge the patience of a saint! She is capable of driving you completely crazy.
But on a good day, if you saw the delight in her face as she enjoys the simplest of things, it would melt your heart.
We have four children now. We love them all more than anything else in this world. And we always will. They are all special. They are all unique. They are all different and all beyond comparison.
Eliza has blessed us beyond measure, just like the others have. She has helped us better understand ourselves, this world and our relationship with God. She has helped her brothers and sisters become better people. She touches the hearts of everyone she comes into contact with.
We still think we are the luckiest people in the world.
Today, being Eliza's 9th birthday, it felt right to share this story. Happy birthday darling. Thank you for being you.
Until next time ..
Don't miss my new Speaking360º weekly newsletter!
Communicating is not just about words. We need to think about our body language, tone, and pacing. How we feel impacts the way we speak. Struggling to find the right content makes us ineffective. Great speakers know that becoming an exceptional speaker isn't just an art - it's a process with many essential elements.
Every Sunday evening Roddy sends out his Speaking360º newsletter, an action packed and inspirational article filled with tip + tricks you can start to use right away!
We hate SPAM. We will never sell your information, for any reason.
Author + Owner of SpeakerPro.com
