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!