Well, as you’ll have probably guessed by the title (it’s a little bit of a giveaway isn’t it?), Hannah will very shortly be celebrating her 5th birthday. Yay!
For many different reasons, it feels like parts of those years have flown by and parts haven’t.
Sometimes, in particularly difficult times, it’s felt like life has moved in slow motion.
There’ve been high’s…and a few too many lows. But I categorically refuse to dwell on those times even though I can never forget them.
And now I’m ok to talk about them (it took me a while!) and I’m not ashamed to do so either.
Despite everything, I consider that we’re blessed.
Now, I’ll try very hard not to sound too morose here as this is a celebratory post, but it’s important to mention that other people aren’t lucky enough to be in our situation. According to globalgenes.org, 30% of children with rare and genetic diseases (children just like Hannah) don’t reach their 5th birthday. Not everyone leaves the hospital with their baby or gets to celebrate their first birthday with them. Not everyone gets to rejoice in witnessing those significant milestones and SO much more.
And that’s heart-breaking
…and so VERY unfair…
And my heart goes out to each and every child and their family who have sadly joined this ‘statistic’.
Whilst Hannah will be 5 chronologically, developmentally she’s currently functioning from 16 months plus, so we too haven’t been able to celebrate many of those milestones with her. But that’s ok, because she’s developing at her own pace, not at the speed a medical textbook or a government guideline dictates. She’s taking the alternative ‘slowly but surely’ approach. And anyway, I’m very much a fan of non-conformity…its far more interesting and colourful than ‘normal’ – whatever IS ‘normal’ anyway?
All being well, we aim to celebrate Hannah’s birthday with another trip to the zoo. She really seemed to enjoy going there for her birthday last year, so we’re going again. I’ll let you know how it goes.
Please just keep your fingers (and toes) crossed for us that it doesn’t rain…or is too hot…or windy…or cold…ah, there’s just no pleasing some people, is there? Us Brits simply love moaning about the weather *wink*.
If you‘ve read my previous posts you’ll know that I sometimes write letters to Hannah and have done since she was a tiny baby. Mostly these are at times when significant events arise, at other times they’re just spontaneous. I guess I find it quite cathartic given that, even though I speak to her (obviously!), I’m not entirely sure what information she’s able to process.
Now I have this blog, I’ve rather neglected the letter writing a little (shame on me!), but I plan to write Hannah something nice for her birthday.
For those of you new to my blog (Hello and welcome!) the day of Hannah’s birth was bitter sweet. We were elated at her safe arrival (I was also pretty euphoric due to the NHS prescribed opiates flowing through my bloodstream too!) but fearful of the path that lay before us. Even though we didn’t really feel like celebrating right then; surrounded by wires and noisy monitors and doctors and nurses and we’d arrived in this strange, strange world that was ever so scary, we had our baby. But we didn’t know how long she would stay with us and I didn’t really feel like writing much (or even had the time) then either.
In retrospect, if I hadn’t had that unbearable ache in my heart and that enveloping fear at what could potentially lie ahead for Hannah, then I would have wanted to have attempted to write a prose as befitting as what I’m about to share with you.
I came across this poem by Nancy Tillman quite some time ago. Her book is beautifully illustrated and it’s well worth checking them out and maybe buying for someone special. For me, it’s a celebration of just how special and unique each child is, regardless of whether they have disabilities or not. Because, as you may have gathered from reading my previous posts, I believe passionately that a child is a child FIRST. A child’s disabilities don’t define them, they’re just a part of them.
So, here it is… thank you Nancy for saying everything I would have wanted to say and, in addition, will never, ever be talented enough to write it.
On the night you were born
By Nancy Tillman
“On the night you were born,
The moon smiled with such wonder
That the stars peeked in to see you
And the night wind whispered,
“Life will never be the same.”
Because there had never been anyone like you…
ever in the world.
So enchanted with you were the wind and the rain
That they whispered the sound of your wonderful name.
It sailed through the farmland
High on the breeze…
Over the ocean…
And through the trees…
Until everyone heard it
And everyone knew
Of the one and only ever you.
Not once had there been such eyes,
Such a nose,
Such silly, wiggly, wonderful toes.
When the polar bears heard,
They danced until dawn.
From faraway places,
The geese flew home.
The moon stayed up until morning next day.
And none of the ladybugs flew away.
So whenever you doubt just how special you are
And you wonder who loves you,
how much and how far,
Listen for geese honking high in the sky
(They’re singing a song to remember you by)
Or notice the bears asleep at the zoo
(It’s because they’ve been dancing all night for you!)
Or drift off to sleep to the sound of the wind.
(Listen closely…it’s whispering your name again!)
If the moon stays up until morning one day,
Or a ladybug lands and decides to stay,
Or a little bird sits at your window awhile,
It’s because they’re all hoping to see you smile…
For never before in story or rhyme
(not even once upon a time)
Has the world ever known a you, my friend,
And it never will, not ever again…
Heaven blew every trumpet
And played every horn
On the wonderful, marvellous
Night you were born.”
And finally, how could I not leave a message here to the most important person in my life?
Hannah, my scrumptious little mouse, my gentle spring rain. You have my heart; and you’re the only one that’ll ever know what it sounds like from the inside.
You’ve made me a better person without ever knowing it. Thank you!
Happy 5th birthday my darling.
I love you more than all the stars in the sky…
and I love you just the way you are!
So, lovely people, that’s all for this post. Except to wish all you Leo/Virgo people “Many Happy Returns” from us here at Broccoli HQ.
Thanks very much for stopping by.
Until next time…
p.s. Thank you SO much to everyone who read my last post and shared and liked. It really means a lot. Given this is a really special post, please consider pressing one of those tiny buttons down there. As I mentioned in my last post, I’m not doing very well at spreading the word that we’re here floating around in the blogosphere…so any help getting the word out would be very much appreciated *wink*. Plus, it would be fabulous to reach 3000 views to celebrate this very special post. Or you could stop by and leave a message in the comments box below…that would be extremely lovely.
p.p.s Somehow (don’t ask me how) I managed to upload the photos this time…Yay!!!
This post is dedicated to Hannah, of course!