A journey (every day in May)

When I was eight months pregnant we took a trip. It was a sort of last hurrah as a family of four. We booked a cheapie Tiger flight at five to midnight, drove the long hours to the city and hopped on a plane.

We enjoyed the sights that Melbourne had to offer by day and retired to cosy family homes by night (have I mentioned before how convenient it is to have relatives in interesting places?) I remember getting stuck in a turnstile at a tram stop at the Docklands. I remember huffing and puffing up the stairs at Fed square. I remember old ladies smiling sweetly at my enormous bump, then looking at my other two grubby toddlers and giving me looks that expressed condolences.

We ate, we drank, we were merry. Well, we did all those things before 7pm bedtime but we still had some fun. Looking back, I may have been a stickler for that 7pm bedtime because I was the tiredest... did I mention I was EIGHT months pregnant? Or that 'little' number three was 9 pound 3 and I am not quite 5'2"?!

On our way home, we hung around the airport and I decided to do some waddling rather than sitting (those of you who've birthed a giant baby know what I mean).

It was then I saw a beautiful sight - one that will stay with me forever*. A greying man in maybe his fifties, holding the hand of his son. His son was jumping up and down with sheer excitement. I could overhear some of their conversation and it was clear that they were queuing for hot chocolate with marshmallows. The older man looked into his son's face, smiling with the enthusiasm and joy reflected back at him. The boy was polite, and just so grateful to be out with his Dad doing something so grown up. And with PLANES nearby, no less.

But... this was no ordinary sight. The son was not a child. He was maybe twenty years old. He had Downs Syndrome. I looked at the father and I looked down at my own four year old son. One day my son would grow to resist holding my hand. One day my son would buy his own hot drink without a thought. One day my son would be bored waiting in an airport full of planes. But not that man's son. That man would get to enjoy the purity of childhood for as long as they were both able to stand side-by-side.

What a beautiful thought - having a child that needed you indefinitely. Being someone's 'Mummy' or 'Daddy' forever.

I'm not in any way trying to diminish the hardships that come with having a child with a disability. I know that life is harder for some than others depending on the needs of their child and of the resources at hand, but I just looked at that grey-haired man and KNEW he felt blessed by what some might see as a burden.

I feel I was meant to see that little vignette at the airport. God was preparing me for a world of patience and trust and love for the unique little person I was about to meet.

My own little number three. He has taken his time growing up. When I realised that something was different about him, I found it hard to put my finger on what it was. So did everyone else around me. As a baby, he was so happy, so sunny, so calm, so quiet - he barely even cried.

This is the Small Boy at around 3 hours old. He just lay there looking at

me while I lay looking back at him. It was such a lovely experience

He is so funny and determined. He is such a blessing to our family. It took time and patience and determination to trust my mothers' instinct and to keep pushing until we worked out exactly what it was that was wrong. I have been so lucky to have been able to access the help he needs to propel him on his way.

These days, he stands out less. The other kids at kindy complain, "He won't talk to us," but little by little he is reaching out and trying to fit in with them. When at a distance, you look at him as part of a group, he no longer stands out.

He's growing up! He's finding his way! His test results have moved from 'profound' communication disorder to 'moderate' and every day he unlocks new words and ideas. It's all just a grand, happy adventure to my gorgeous Small Boy.

He has taught me patience and faith in a way that nobody else could have. I've found it easier to count my blessings and forgive my own short-comings as the mother of this perfectly beautiful little boy.

Because he IS perfect. In spite of his dodgy ears (which are now repaired) and the crazy little wild thing he became while we were working him out, he is just amazing and gorgeous and beautiful. And I wouldn't trade any of it. In fact I relish the fact that I get to stretch out these toddler years a little further than most.

Here he is at 14 months. We were just starting to investigate his issues - not

responding to his name, poor gross motor etc.

And while I really believe that in ten years, he'll be as able as my other kids, I'll be OK if he needs me just that little bit more than Mr Z or Miss Piggy.

It's been a journey of growth for me. I hope it's been a journey of growth for him, too. That his struggles will make him a patient man who takes challenges in his stride. Who embraces unique people and situations with warmth and kindness.

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* Incidentally, the last time I'd seen a breath taking sight was ten years previous in Brisvegas, in front of City Hall. There was clearly some sort of ball about to start. In the square were people in their finest, standing in small groups but not a word was spoken. All you could hear was the flapping of hands as people signed to one another. I desperately wanted to take out my camera and record this amazing scene but instead I chose to just take it in. One night in Brisbane out of maybe two for the year. But I was there THAT night. Things ALWAYS happen for a reason.

Houston... we have a problem

I caught up with an old friend last week. A friend I hadn't seen in eighteen months, despite the fact we live within walking distance of each other. I brought fruit, she brought coffee and cake, we both brought kids and met at the local park.

After all the greetings were done, and we let the kids loose on the playground, I saw her watching my Small Boy extra carefully. It's a look I've seen before. "What's wrong with this picture?"

It's kind of hard to blurt it out. How can you tell people your child has a problem without feeling like you are letting our child down? Every time I tell strangers, "He's hearing impaired, I'm sorry," when he takes the lollipop/balloon/whatever they are offering without a "thank you", I feel like making those excuses for him might be hurting his little ego.

I find myself pushing him around Coles in the trolley saying things like, "Oh, you are a lovely boy! You're so handsome and I love you so much" just to sort of reaffirm to him that he is just such a delight to mother. I don't want him feeling anything less than the wonderful, smart little person he is. I suppose I'm putting myself in his shoes. Imagining how much I would hate for everyone to know that I was behind in such important skills - listening and talking.

You might be thinking, "why isn't she worried about him being trapped in a body with no way to communicate his ideas?" and that's because despite the lack of speech, he communicates beautifully. He has an expressive little face with dimples when he smiles. He does some signing on the important things. Apart from this - between his pointing and showing he always seems to get his message across. And when he can't? Well he does it himself. He's been pouring his own milk and cereal for eighteen months now (sometimes at 3am if he gets hungry). He drags a chair to reach for things like the secret m&ms in the fridge. He pours his own water and peels his own bananas. He can even turn on a computer and put his favourite show on iView! So, there's no need to be feeling sorry for him. He's quite content.

So... back to my playdate.

I have a system of sorts. When I need someone to know what is wrong with the picture I sort of casually slipped the following phrase into conversation, "...since the surgery..." For some reason, if you mention surgery, people will always always say, "Oh... what surgery?" That's my cue to let them know about his ears and how now he can hear and how with only a few months of hearing under his belt he's doing quite well with his talking.

It's the only way I know how to put a positive spin on the whole thing.

If we open with surgery, people are suddenly filled with admiration for my brave boy. They want to hear about his successes with his talking instead of commiserating the fact he's behind. I don't want to hear anyone saying things like, "Oh, he'll catch up when he's ready" or saying things like, "Must be because he has older siblings to do the talking for him." I want to hear, "...wow - it must be like a whole new world has opened up for him! Isn't he doing well to be so happy about it all?"

He's ready. He's working hard. I have no doubt speech will happen and the less pressure on us, the easier it will be. It makes me feel so much more confident when people acknowledge the effort he's making, how brave and smart and happy he is.

In the next few months, we find out if he needs more surgery. I believe in the power of prayer... if you do too, please add us to your list? Pray that this first surgery was enough to correct the issue in his ears and the only other hurdle we have is getting him speaking.

Thanks for listening  :)

Long overdue

Wow... it has been a long time since I touched this poor neglected blog! I'm not making an excuse but so much has happened over the last nine months.

In amongst the usual craziness that comes with work and three children, I ran myself a bit thin. And... I started to doubt myself as a mother. I really got myself into a place where I started to doubt my ability to cope, to judge, to understand my own children.

I felt something was wrong with my youngest but listened to everyone who told me, "He's fine. He'll talk when he's ready." I started going to seminars on autism when people told me that his reluctance to talk may be behavioural. But I couldn't quiet this small voice in my heart that told me what I knew.

The signs were there. Not responding to his name. Communicating with his hands and with a series of grunts. Slow reaction time. Siblings who just stopped talking to him. Thank God for a GP who didn't treat me like a hysterical mother and who sent me for another hearing test - this time one that used technology to measure hearing rather than the behavioural tests I was sure the Small Boy was fluking.

I knew it. I knew it. Now I was mad at myself for not making more noise, for not making someone listen to the truth I already knew. My son was deaf.

I saw was because when we were told (two and a half years into his little life) that he was hearing practically nothing, a crazy medical machine was put in action. Suddenly, after being told on a Tuesday that he was impaired, we were booked in for a Thursday exploratory op with surgeon I'd just met in the hospital where every elderly family member seemed to go at the end. At end of term, no less. And with Miss Piggy's birthday on the Wednesday.

I felt like I was being sucked into a tornado - the very same people who told me his mutism was selective were now saying there was a very real and medical reason for his not talking. I started worrying about the affects of anaesthetic, of staph infections, of doctor error. I started trying to convince myself it wasn't his ears. I cried and I cried and I howled hysterically. I rang our GP at home to ask a billion questions. But in the end, what choice did I have? I knew they were right. I'd known before they'd known.

So... my Small Boy is no longer deaf. Thanks to the miracle of modern medicine we have a temporary 'fix' that means he now hears in excess of 95% of the world around him. We have spent the last few months teaching him about the hearing world (along with dealing with floods and tornados, but that's another story). Is anyone out there interested in hearing about our journey? Is there anyone out there with tips on teaching a now three year old to talk? Has anyone got a similar story to share?

I'm doing OK - really I am! I'm feeling positive about my Small Boy and his ability to cope in the big world. He's learned that people talk with their mouths open, that hand dryers (despite their ugly growling sound) won't hurt you and that saying, "Maa," is bound to make his mother cry.

So far to go... yet we've come so far already. Thank you for listening :)