Saturday, March 8, 2008

The wonder of the human spirit

So after 14 days in hospital we finally were able take A home, with a future hospital appointment for a hearing test in 4 weeks time. Apparently we needed to wait 4 weeks in case any residual brain swelling from the meningitis might effect the results of the hearing tests.

At that point, the smallest reason for our greatest joy at that time was having our boy home in our house, sleeping in his bed, his parents finally being able to sleep in the same bed together. His brother able to have some semblance of normality to his life - after 14 days of being looked after by relatives, picked up here, dropped off there, when all he really wanted was the normality of home, and Mum, Dad and A. It was great to be home, all 4 of us together in the same house.

For awhile at home one of us sat behind him, as you would a baby learning to sit upright, in case they topple and hurt themselves. He would still topple completely unexpectedly. He couldn't tell us what he was feeling but he always looked quite confused about how one minute he could be sitting up right, then next lying there staring at the ceiling.

Before meningitis A was the happiest, cheekiest little boy. He loved life with a capital L! The broken little boy we brought home was not the cheeky monkey he was 2 weeks before. He was one angry little monster. Prior to hospitalisation he was toilet trained, when he came home, forget it baby, I'm not doing it, you can't make me, was his attitude. That changed back again over night, and so did his behaviour, but you will have to wait for that story to find out why.

Many a time, he would lean lovingly into his younger brother's pusher, loving and cuddling him or so I thought...til I heard the blood curdling wail and loud yelling and tears, only to see a set of freshly made teeth marks imbedded in B's arm, leg or even hand.

However for all that anger, one day he made it very clear to me that this kid was a survivor and no matter what life threw at him, he was going to focus on that curveball and smack it clean back over the pitcher's head and out of the park! He was able to sit with balance and even crawl a little bit. He still couldn't walk at this point though, he just didn't have enough balance to stay upright for that amount of time.

One day I saw him playing with toys on the loungeroom floor, toys I didn't put in there for him to play with. So around the corner of the door I stood and watched him, unseen from where he was. He grabbed his ride on toy, a fire engine with a seat with that flipped up to store things inside the seat. Using the balance he had, he sat down turned it around and rode off to his room. Once in his room he went to the cupboard that held the toys he was looking for, and pulled the fire engine to a stop right next to it. Carefully he clambered off the fire engine and crawled over to the cupboard. After judiciously selecting the toys that were to be played with today, he began to pile them back into the seat of the fire engine. When it was full, he would put the seat back down, clamber back on and ride it into the next room, unloading his bounty onto the growing pile of toys. I stood there my heart breaking. On the one hand, my heart broke for the fact the he couldn't just walk in and out of his room and carry the toys like he had only 2 weeks before. The fact that he couldn't only served to remind me of how much damage one bacteria can do to the brain of a developing child, the fact that he couldn't reminded me of how unfair it was for my baby to be robbed in this way. But in amongst the hurt, the pain, the fear for the future, was the undeniable amazement of the strength of the human spirit. This not much older than 2 year old toddler was not going to have the inability to walk stop him from achieving what he wanted, and at that point in time it was TOYS! So damn it he was going to find a way around it and get those toys somehow. Which he did, completely autonomously. Through the tears I marvelled at what an amazing little guy we had been blessed with and what an amazing spirit he possessed. Our little survivor, he survived his meningitis and he was fighting back against the after effects, losing his balance for awhile was not going to stop this little guy.

Of course that 4 week wait til the hearing test seemed like a life time. So we did what any self respecting parents would do - we would sneak into his room at night and bang pots and pan lids in there trying to wake him up. Of course he didn't wake up, but again as parents it was our role and duty in life to deny the rational and the logical and cling to the hope and belief that he hadn't lost his hearing. He was just sleeping heavily, it was the brain swelling still effecting his hearing, that is what the doctor said right?

One really beautiful Spring day I decided it was just too nice for us to stay home. The boys and I were going to head off out for a walk in the sunshine, it would be so good for all of us.

So I loaded up my precious cargo into the tandem pram and we were off. It was just so gorgeous outside, the sun was shining, the birds were singing, it was just the most perfect spring weather. We walked for awhile in the sunshine, taking in the sights.

We were passing a house with a painted galvanised iron fence. Why is it that people paint a big piece of rippled metal in colours like green or beige? Do they honestly think it makes a hunk of metal look more natural, or part of nature? Anyway we approached this house, my little unit of 3 out together having fun. Of course behind this fence lived a dog, but of course we did not know that, did we? From nowhere it ran at the fence, hidden from our view but the panacea of beige metal, and it loudly barked its disapproval that we should be passing its house. Well as you can imagine, this came as quite an unexpected shock. Lucky for B he was still in nappies, no-one would ever know, me on the hand well it was lucky that control had not entirely deserted me! B and I jumped out of our skins, literally levitating from our positions, as we were taken by surprise by the nosiy canine on the other side of the fence, barking right along side where we were standing. A didn't even flinch, didn't turn his head, didn't react, nothing, nadda, nil! My heart sank, oh sure I could right off the unconventional pot banging hearing test, I could right of the fact he was soundly asleep.....but here before my eyes this really loud noise was going on less than a metre from his head, and nothing, no reaction, nada. My precious boy, he had beaten the odds and survived meningitis (which the strain he had, has around a 20% mortality rate did you know?) Yeah right great let's celebrate his survival of meningitis and then when you think you might be out of the woods lets just kick you in the guts again because hey folks it looks like he has a hearing loss. I couldn't stop the tears that flowed down my face the rest of the way home. It wasn't a blood curdling wail, it was just the silent flood of tears, of soul destroying reality.

However somewhere inside, that human spirit kicked in when I walked through the door. If this was what we were dealing with now, I needed to know. I needed to have this confirmed so we could start sorting out the what happens next bit. I rang our paediatrician, we were on first name basis by now! I asked if we could move the hearing test forward because I was absolutely sure this little guy couldn't hear. I will never forget his next question; "What ear do you think he can't hear out of?" With all the self control I had to muster and to this day I brim with pride that not a single "f" word did I utter in response (yeah yeah I know you are shocked, because I am not adverse to dropping it every now and then) response "Ah how can I tell what ear he is not hearing out of, if he isn't responding to a single sound?" The paedatrician said we needed to wait the last week or so out and do the testing at 4 weeks. So great we had another week or so in which our imaginations could run wild with the worst thoughts and then again the false hope ridiculously daring to believe that maybe the hearing loss was temporary and in a weeks time all would be fine.

As we waited out that time, I found I had to become a different parent to A. I had seen him not react to the sound of a man eating monster of epic proportions barking less than a metre from where he was sitting. If he couldn't hear that, then what could he hear? Me talking to him, me calling him, me asking him not to continue that inappropriate behaviour? What if he was naughty and I thought he had heard me tell him not to and then I told him off. What if this little guy had no idea that I had spoken to him and then the next thing he sees is this angry mummy face and suddenly he is being punished and he has absolutely no idea why? I had seen that look of terror and confusion when his parents allowed those nurses to stick a horse size needle in his tiny chicken leg thighs. I couldn't risk having him experience that fear and confusion again. I made a commitment that unless I caught him in the act red handed where he could see my face right then and there when he was up to no good, then there would be no telling off, no discipline. I couldn't risk hurting this little boy anymore than what he had already suffered. That is the way it would be until we knew exactly what we were up against and what the future would hold.

Til then it was a slow and agonising wait, til we could see the audiologist and find out exactly what he could hear, and what, if anything, we could do about it.


Jodi Cutler Del Dottore said...

You are such a natural. You are creating a beautiful blog that will only grow and you will grow with it. It's about time you started! I'm really happy for you and as you know, I'm a HUGE fan...sending a lot of international love your way...Jodi

Kath Lockett said...

My eyes misted up when you described the dog-barking incident...

Keep this up girl!

Rachel said...

Unreal! Someone else's following Jodi's, my and other's paths! Welcome to the blogging world!

Naomi said...

Hey Rachel

thanks! I think I am a frustrated writer so this is all very therapeutic : - ) A would probably kill me of course LOL