Tuesday, January 29, 2008

Your Songs

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!"

Vanessa Williams

"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."

Billy Joel

"True Perfection has to be imperfect."


"My heart is drenched in wine,

You'll be on my mind, forever."

Norah Jones

"Magic is there when you smile."

Rosie Vela

" 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!

Phil Collins

"I'm loving angels instead."

Robbie Williams

"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!"

Louis Armstrong

"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."

Carly Simon

"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."

Snow Patrol

"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!'"

Labi Siffre

"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."

Bruce Carroll

"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"

Carole King

"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!"

Sinead O'Connor

"Your face is just beaming, Your smile got me boasting,

My pulse roller-coastering"

Simply Red

"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."

Josh Groban

"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."

Eva Cassidy

"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."

Elton John

Saturday, July 28, 2007

A Few Firsts!

Well brace yourself....this will be my most cheerful post ever!
July has brought more positives than June brought negatives! A series of firsts for Charlie that the rest of us have delighted in! The earliest one was so long in coming but he is now safely sitting unsupported and can correct himself when he starts to topple over! As if that weren't enough check out this last picture...we are standing! and boy don't we know it's clever! He's so proud of himself! He still needs a hand to support him but he's genuinely bearing weight which is such a relief to us all. Next milestone (and my personal favourite!) I am "Mama". I thought at first this was a coincidence, but when he's upset and being consoled by someone other than me, he repeats it until I take him. Then he cuddles in and goes to sleep! (actually shedding a tear as I write this - I'm so happy!)
Another new acheivement is grasping his toys and attempting to use them with intent (In the fourth picture, we are proudly managing a dummy and a bell rattle at the same time!) I know this is a late skill to arrive but that's all the more reason to be pleased that it finally has.
This month has also brought his first sign (More!) - I have tried to capture this on film but its difficult as I'm trying to cooperate with what ever he wants more of. The closest is the sleepy one where he was actually wanting more 'incy-wincy spider'!
The best news realistically is that we've had our first review with Charlie's consultant that brought only positive feedback. She is delighted with his progress! His fits are in decline. His muscle tone is vastly improved and he 'performed' at the appointment, generously displaying each oof the firsts mentioned above. The consultant summed up by saying he had made 'real significant progress', nicer still she repeated her stance on children with Down Syndrome.
"I love these children." but added "but I have to admit, Charlie is particularly lovely!" No more than I thought, but praise indeed!
Obviously then it's been a great month and on top of that school's out! No more work for six weeks! Which obviously allows me more time with my little loves. The children I have taught this year to echo Charlie's consultants sentiments were 'particularly lovely' and the generosity of the parents in their wonderful messages, cards and gifts at the end of term were overwhelming. I thank them sincerely and will genuinely miss their children.

All in all it's been a good month. Here's to many more!


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Monday, July 23, 2007

The Glass Half Full...

There are several things these last months we could have done without. Most significantly, Charlie's EEG results did not bring the comfort we expected. In fact, quite the opposite! Charlie is experiencing some seizure activity. Our first reaction to this was to be frank - disbelief! Having seen so many seizures in the past, surely we'd have noticed? However, shortly after these unwelcome results, came some unpleasant nocturnal 'episodes', and all becomes clear - You don't notice anything when you're sleeping do you?

So we're back to sleep deprivation. Well I say back, I don't think we ever left it. Charlie sometimes has a good nights sleep but do Paul and I? - Not really! When he's grizzly, you really daren't ignore it and when he's peaceful, you're worried he isn't making any noise so you go and check on him anyway! - Poor chap can't win!

To cap it all, by the time everyone's settled, one of the girls almost invariably starts their nocturnal wanderings. There's literally always something happening in our house!

Charlie has also had some unexpected weight loss and whilst he certainly doesn't look malnourished, there's obviously some degree of professional concern that his weight's moving in the wrong direction particularly as he isn't the most active little boy.

One of his therapist's recent reaction to the news he had started to wave 'bye-bye' was:

"About bloody time you started doing something Charlie!"

I'm surmising from this that she isn't overly impressed with his general progress!

People ask innocently "Is he walking yet?" I answer, "Not quite!" - This is diplomaticaly stretching the truth as he isn't even safely sitting yet and his physio is obviously concerned he needs to start weight-bearing.

So admittedly so far, the glass is sounding at least half empty...except that isn't the way I feel. I've noticed something recently and it's this...People are ridiculously kind towards us - Both people we know, and people we don't. I find the kindness of strangers immensely touching and simultaneously puzzling. Charlie elicits smiles, gentle touches, wistful looks and good wishes from almost every stranger that bestows him more than a fleeting glance. Older ladies want to hold his hands and are clearly entranced by his smile. Older gentlemen treat me with a strange kind of reverence and often squeeze or pat my shoulder, or offer some similar fatherly and affectionate gesture I've done nothing to deserve.

I've been told I should find this patronising. - Well I'm sorry I don't! I think it's wonderful, firstly that Charlie clearly touches people and after meeting him they take away with them not just the memory of his smile but a reflection of it, and secondly, the gentle pats and squeezes, I see as recognition of the immense pride and love I have for him - I think it's tangible - and that's why people touch!

I'm afraid I don't hold with the popular view that you shouldn't use words like 'normal' and 'disabled'. Why not? Charlie isn't normal and he is disabled! The term 'differently-abled' has that 'do-gooder' ring to it and I'm willing to bet it wasn't originally coined by someone with, or a relation of someone with a genuine disability. I don't feel stigmatised by or ashamed of these terms and labels and I'll make sure Charlie isn't. I think it's part of the same attitude that enables me to feel pleasure and not defensiveness in the face of these 'kindnesses'. I'm grateful for them. They are a huge plus amidst a stream of little minuses at the moment and I hope they continue!

People we know also show us great kindnesses. Too many to mention, although a recent one is noteworthy. My friend's husband recently made us a beautiful sandbox. Not a small affair but a great big, 'fit-all-three-in -at once', lovely piece of garden furniture. With the left over wood he made a lovely planter in which Caitlin, Claudia and Charlie now have their own miniature tree and flowers. He wouldn't accept any payment despite the fact that these gifts would have cost us hundreds to buy. His wife also reliably informed me that he would be mortified by the surprise gift we were planning by way of a thank-you, because he 'just wanted to do it!' He wouldn't even hear of a crate of beer which has always been Paul's fail-safe thank-you plan. Apparently it was reward enough to know that the children would get enjoyment from his efforts. So by way of a thank you Alan, there's some evidence at the top of this post and some more in the gallery at Charlie's website:
and also a personal thanks from Paul and I - it's acts of generosity like yours that keep us feeling that the glass is more than half-full - it's over-flowing!


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Wednesday, May 23, 2007

Losing That Baby Look!

That's what many people have told me this month. Charlie is officially losing that 'baby look'. I'll be honest - this terrifies me; partly bacause Charlie has to be my last baby, so I'll never be here again; and partly because as Charlie moves through each stage, I have to acknowledge and face different realisations and challenges.

In fairness, Charlie has so far proved far less of a challenge than I could have imagined in the bleak first few days after his birth. When I have discussed those initial days with close friends and family since, one question has consistently reoccurred:

"How did you get through it?"

The answer is simple. I got through it because grief, no matter how intense, is not terminal: I survived because I didn't die! In the first few moments, I thought I might. In the fiirst hour, I wished I could. In the first weeks, I awoke with a crushing, heavy sensation and thought "When will this awful feeling go?" I didn't want Charlie to go of course. By now, I couldn't take my eyes off him and he held my heart with an iron grip. I just wanted the nagging sense of gloom to be gone.

I'd always felt the "Why me?" question was pointless. I believed the universe was random, so the obvious answer was "Why not?" After Charlie, it didn't seem quite so random. Having a third child with a disibiliry actually feels far from random - you feel singled out! You can't avoid the "What did I do to deserve this?" thought. Sometimes when he's unsettled, and I bring him into bed withus for a little while, I lie next to him and hold eye-contact, return smiles, even echo the sleepy giggles and that thought came back to me.

"What did I do to deserve this?...What did I do to deserve you?"

In those private, personal moments, I know it must have been something really good! But this realisation doesn't stop me worrying about my children's future: How they'll cope, What they'll become, What will become of them?

I spoke to a friend recently about a television programme she had seen. The programme featured young adults with Down Syndrome going about their working life. It shared their successes and disappointments. It's worth mentioning here that my friend has a baby daughter who also has Down Syndrome. The programme had upset her and she'd turned it off before it ended filled with fear about what her daughter's future might hold. I've had this feeling many times. Having now turned into a DS stalker, I can often be found lurking in shopping aisles, tailing the trollies of people I have noticed with Down Syndrome. Sometimes there's something fundamentally adorable about them, they seem to be coping really well, sharing a laugh with family, choosing their favourite nibbles and I walk away feeling reassured. Other times, they seem frail, prematurely old, wistful looking and there's something fundamentally heart-wrenching about them. I walk away terrified, wondering how Charlie will cope when I'm not here to look after him. For that matter what will happen to all three of my babes?

But at the end of the day the worrying is pointless and self destructive so I now actively avoid looking too far ahead and I console myself with the words of Anne Lamott:

You don't have to see where you're going, you don't have to see your destination or everything you will pass along the way. You just have to see two or three feet ahead of you.

The two or three feet ahead of Charlie at the moment holds only minor questions: Will he be able to stand soon? How long will I get away without cutting his hair? Did that sound like 'Mum' to anyone else?

Maybe every parent would gain a little something from just pausing a moment and enjoying their children today, now, in the moment they're in. Letting go of all the everyday worries;

'Will they make the football team?' 'How will their SAT results be?' 'Are they too timid/boisterous/confident?'

Just for a minute let it all go and think:

'Who cares? They're mine and I love them.'

Here's something I read recently:

All parents worry about their children's future and see plenty of examples of what they don't want their kids to become. Its human to hope that our child won't be rude like Uncle Stuart, or mean, or lazy, or dishonest. When our child has a disability, the negative possibilities may seem more clearly defined and more certain and, most important, more alien. We may never have had a meaningful personal exchange with an adult with disabilities, so we have no way to imagine such an interaction as something other than distasteful, uncomfortable, or frightening. The parent of a toddler with severe brain damage, seeing an adult who is profoundly retarded looks at his child and thinks, "Will I still love him tomorrow?" But our child won't be an adult tomorrow. He is not, suddenly, overnight, going to become the shadow on the wall or the monster in the closet of our imagination. And when he is grown, we will not see him as defective or hopelessly dependent, because he will still be our child, someone we have loved, grown with, and come to know day by day.

I will live today loving my child as he is right now, and not project fearful possibilities into the future.

So that's what I'm doing and to be honest, it really isn't that difficult. Looking at Charlie, it's impossible not to love him - he's beautiful. Paul thinks he's the bonniest baby he's ever seen and although it's completely improper to brag like this - I've never seen a child I thought as cute. I happily wear the rose coloured spectacles of a mother and believe he is gorgeous. Not "Cute considering the Downs" or "Adorable in his own way!" but genuinely, heart-stoppingly gorgeous. Doesn't this make me normal? Aren't my unrealistic ideals the same as the ones held by most loving parents?

I don't know what the future holds for any of us but I know the morning will never come when I look at my children and don't feel that 'love at first sight' lurch in the stomach. I think that's all I really need to know!

Sunday, February 11, 2007

Small Things to Smile About...

Charlie is making better progress this month. He has cut his first tooth - that's been a long time coming! He plays with it with his tongue constantly and for some reason known only to him, finds it irrationally funny. He's developed the kind of giddy, infectious laugh that could affect even the hardest heart. Best of all, Charlie is really trying to communicate. He makes strange yet completely endearing noises and shows real delight when they are echoed back to him. A broad smile and a few seconds later, he's off again! It's a conversation!...and it's genuinely heart-warming.
I've also noticed for the first time, he's actually starting to reach for his toys. This is a milestone I've been watching for for so long. Strangely enough, as if he senses my anticipation, his hands stay rigidly by his sides as I play with him. As soon as I move away (and he thinks I'm not looking) his hands start to twitch and he makes those tentative, stretching movements outwards. He's obviously inherited his sisters' cheeky streak!
He'll be having an EEG soon to check he hasn't any seizure activity. I don't believe he has but I think it will be an uncomfortable experience, bringing back too many sad memories of Claudia and Caitlin wired up in the same way and always with the most unwelcome results.

The girls themselves are doing really well at the moment. They still have many absences, especially when they're tired but the bigger fits seem to be in decline. Thank goodness! This lull has brought improvements in their development that have far exceeded our expectations. Their language skills are beginning to shock visitors who have gradually come to view them as 'quiet girls'. They've reached a new level of cheekiness - Caitlin's current favourite is a very 'talk to the hand!' gesture accompanied by her very forcefully asserting: "I'm not talking to you anymore!" Although she can't maintain her aloofness if I say it back to her. She quickly trots after me repeating: "Hello Mummy...yes you do talk to me!"
Claudia remains quieter, partly because that's her nature and partly because she's still a little further behind in her development. There's something about Claudia's general demeanour that seems to pull at everyones heartstrings. She has a beautiful, sensitive face that is just as likely to dissolve into tears as a grin and considering her autism she is incredibly affectionate.

I love spending time with my little family! Like so many mothers however, I'm sorry I don't have more of it to spend. Much is said these days about getting an appropriate work/life balance. Unfortunately, my idea of the perfect balance is 5% work, 95% life!

I'll keep dreaming!

Tuesday, December 26, 2006

A Year with Charlie

So I've spent a year with this gorgeous boy now and what has he taught me?

Firstly the capacity to love is infinite! I could never imagine loving anything or anyone more than Paul and I love our children, or each other.

Secondly he has redefined friendship for me; The friends I seem to have had a lifetime have proved they will be friends for life. I love and value them more than ever before.
Some friends I haven't had for so long have proved they are worth crossing the globe for! Most friends and especially Charlie's Godparents have simply 'been there', - quiet asides to Paul and I when it has been necessary, cuddles for Charlie and the girls, small things that ultimately mean everything.
I have also realised throughout the course of the year that people I had previously considered friends are actually just colleagues and that that's ok. We all have our own lives to lead and we all keep those who are the most important closest. In some ways this has been the most important lesson of the year. It allows me to spend time with those who actually make the most difference because I'm not so divided and I realise that I still care about and respect everyone else anyway. In almost every case, despite spending less time with people, I think no less of them than I ever did.

Thirdly family are, as they always were, fabulous! I wouldn't have thought it would be possible to become closer to my siblings as I have always loved them so dearly. Charlie has also changed my view on that! I spend less time with them out of necessity but value them more than ever and thank God for them almost daily, they are one of my greatest blessings! The Grandparents of my gorgeous children are as loved as they ever were but mostly, infinately more respected. They allow Paul and I 'private time' when we realise that as hard as it is to comprehend, we have a love, a friendship and a bond that exists beyond our children and is undoubtedly my greatest gift in life. There are some family members that Charlie seems to have forged more of a bond with and for this I'm also very grateful. I enjoy spending time with them far more than I ever thought possible before and I realise that ideas we have formulated over many years can be proved wrong and foolish in an instant.

Finally I have realised that there are some people who despite the opportunities and crossroads they are presented with, will never, ever change and I must allow them that. At the same time I don't need to agree with them and never see that as likely - that is also ok, because in all Charlie has taught me as I said initially, that the capacity to love is infinate. Those closest to me especially my gorgeous girls, my wonderful husband and of course the legend that is Charlie I have come to realise are all that is important in life. The most important gift Charlie has bestowed is that I hold no ill feeling towards anyone. Its probably the first thing he taught me! Many years ago I read that the last words Anne Frank wrote in her diary were "people are good." I remembered being astounded at the time that someone in her incomprehendable circumstances could think that, after all she had witnessed. I know nothing of her heartache and trauma but have realised in a year of adversity that strangers are kind, friends and family are 'soul food' and yes, basically people are good!

Charlie in one year you've been quite a teacher!