It's been quite a while since I posted and there's probably only one genuine reason why. I received some unexpected and some very unwanted feedback; Some individuals felt the need to tell me how unappealling and to use their words 'disgusting' and 'ugly' they found Charlie. After my initial shock, I started to question myself. Why should everyone agree with me? Why should I expect others to share my opinion on how fantastic Charlie, Claudia and Caitlin are? However I've come to realise, I'm not the one with the problem. It's not a crime to be proud of a family others would consider less than perfect! The authors of the comments aren't really worth the effort of responding to, so I won't. But it's taken me some time to draft the following because I wanted it to reflect both sides of the coin.
It's true not everything about disability is joyous - We've had our fair share of difficult moments. The most difficult of which was the original diagnosis and acceptance of the fact that our much anticipated and beloved son had Trisomy 21 - Down Syndrome.
Trisomy 21 is a little something extra. An extra 21st chromosome to be exact. When we first learned that Down Syndrome was caused by the duplication of the 21st chromosome, Paul was amazed that having that little 'something extra' could have such wide-reaching consequences
"Wouldn't you think it would mean you had an advantage if you had something more than most people?'
It takes a while to realise that that's exactly what it does mean. Charlie does have an advantage. It's hidden somewhere his soulful eyes and his gleeful smile. He has the ability to evoke real happiness in people without even trying and that's a gift most people don't have.
In honour of Down Syndrome Awareness Day in the States, I noticed on several of the blogs I read the mums had listed 21 facts about their wonderful children. I loved this idea but to be honest, if I were to list 21 things about Charlie, they would be so similar to the ones I'd read that it would be more efficient to simply cut and paste - How creative would that be? Charlie deserves more - more than the clumsy way I might try to capture the wonderful things about him and how he makes me feel. So I thought if I'm going to pinch sentiments, I might as well pinch poetic ones. To that end, here are 21 lyrics from a diverse selection of songs. Each one descibes an aspect of Charlie or his life with us more perfectly than I ever could:
"Sometimes the very thing you're looking for is the one thing you can't see!"
"I said I love you, that's forever
This I promise from the heart.
I couldn't love you any better
I love you just the way you are."
"True Perfection has to be imperfect."
"My heart is drenched in wine,
You'll be on my mind, forever."
"Magic is there when you smile."
" If only tears were laughter, If only night was day,
If only prayers were answered, then we would heal God save."
"For one so small, you seem so strong,
My arms will hold keep you safe and warm,
This bond between us can't be broken
I will be here, don't you cry
You'll be in my heart. Yes you'll be in my heart,
From this day on now and forever more.
You'll be in my heart, no matter what they say,
You'll be here in my heart...always!
"I'm loving angels instead."
"I hear babies cry, I watch them grow
They'll learn much more than I'll ever know
and I think to myself - What a wonderful world!"
"So don't mind if I fall apart
There's more room in a broken heart
and I believe in love - what else can I do?
I'm so in love with you."
"I don't quite know, how to say how I feel.
Those three words, are said too much, they're not enough.
...all that I am, all that I ever was,
Is here in your perfect eyes, they're all I can see."
"Brothers and sisters, when they insist we're just not good enough,
Well we know better, just look them in the eyes and say,
'We're gonna do it anyway!'"
"See to them it didn't matter why some things in life took place,
They only knew the joy they felt when they looked into his face.
Sometimes miracles hide. God has wrapped our blessing in disguisse."
"Light up your face with gladness, hide every trace of sadness,
although a tear may be ever so near."
Nat King Cole
" Now I'm no longer doubtful of what I'm living for,
Cause if I make you happy, I don't need to do more.
You make me feel...like a natural woman"
"Each of these, my three babies, I will carry with me,
For myself, I ask no-one else will be Mother to these three,
I'm off course, I'm like a wild horse but there's no other way I could be...
in my soul, my blood and my bones, I have wrapped your cold bodies round me.
The smell of you, the face on you
will always be with me!"
"Your face is just beaming, Your smile got me boasting,
My pulse roller-coastering"
"You raise me up so I can stand on mountains, You raise me up to walk on stormy seas.
I am strong when I am on your shoulders, You raise me up to more than I can be."
"High up above or down below, when you're too in love to let it go,
But if you never try, you'll never know, just what you're worth."
"To you I would give the world, To you, I could never be cold,
'Cause I feel that when I'm with you, it's alright,
and the songbirds keep singing like they know the score,
and I love you, I love you, I love you, like never before."
"And you can tell everybody, (these) are your song(s)
It might be quite simple but now that it's done,
I hope you don't mind, I hope you don't mind that I put down in words,
How wonderful life is, while you're in the world."