Smoother road

I stroked his little hand as we both sat on the aircraft and I couldn’t help but marvel at how sweet his hands are, so soft, so small. Not at all like you would expect a hand from a 14-year-old boy to look like. It is so gentle, and not very strong, so I can easily hold it against his flapping arm as it threatens to be pulled out of my grasp. The flapping over, and he relaxes and ever-so-gently rubs his thumb and forefinger around my thumb. He stays like this for the longest time. It’s nice to spend time with Josh when he’s being sweet, even nicer when I just have to sit, no option of going off somewhere, like the computer or chat with someone else, to work or to play. It’s just me and him, all day together.

We had a big day ahead of us visiting his specialist at Princess Margaret Hospital in Perth and I was apprehensive, worried the Dr might suggest today to go ahead with the more difficult surgery on his pelvis. I didn’t want to hear this and I was concerned that he had been padding me, bracing me for this suggestion. Last time we were there I had a melt-down in front of everyone, he wouldn’t have dared to talk much of this, but it did come up. This morning I looked more like myself, a far cry from the crying, stressed out freak the Dr saw last time on our return visit. But I knew… a few words could change my day so very quickly.

Josh flies ok, but has trouble with the ear-popping as he doesn’t understand. I usually give him a drink and that helps, but today I thought I’d see if he could ride it out as he was being very good, reasonably quiet (for Josh) and happy. He does slip forward and he’s heavy for me to haul back up the seat, and ends up with the seat belt around his tummy – uncomfortable. I propped his legs up on a bag. There weren’t too may women on this flight, and I noticed a few people looking at Josh, perhaps wondering what had happened to him, why he was different, but they were kind looks, interested looks, smiles. Funny how no-one looks when Josh starts making loud odd “Josh noises”. It’s interesting watching people. You know, I always hear that there are so many bad people, so many who don’t care, but I don’t think there was any other than good people on our path yesterday.  Some days are just like that, and some people don’t get the opportunity to see it either, but with Josh I get to see a whole lot more of people than they would normally let on. If you know what I mean. Man, I am rambling tonight. I hope something makes sense.

Flying tends to cause Josh to crash low with his diabetes, and was passing out in the taxi.
“Oh joy, here goes” I thought as I searched his freshly packed bag in vain for a sachet of sugar. Once inside the hospital I stood at the reception for a little while, patiently waiting to ask if I could have some sugar. Waiting, waiting. Something inside me told me to be a little more proactive and I promptly walked out of the clinic, round the corner and onto the nearest ward. I walked in like I owned the joint, past the doctors and headed for the tea room. I appeared triumphantly with 2 sachets of sugar and was back with my boy, with only approximately 15 seconds gone by. 

It was much more comfortable in the clinic this time compared to last year and I must have looked at home as other Mothers were asking me directions for facilities. I am much happier when I know my surroundings, and I could sit and watch the other children as they made dress up paper dolls. I wondered who had cut out all those paper dolls and how much they would benefit from a Cricut machine. I saw a little poppet girl that you could just about put in your pocket, kids with disabilities, and those whose condition wasn’t something you could see. It was funny though, unlike the adults in the plane or at the airport who would politely not look up or stare, the kids in the clinic would all stop dead in their tracks and stare at Josh when he started hollering out his odd noises. I remembered what it was like being here all that time ago, our first time, listening to the room full of doctors telling me what would happen to Josh if we didn’t fix it. I remembered feeling my phone vibrating in my pocket as my brother called and called to see if we were ready to leave, and I wished he’d stayed with me instead of going to the auction. Things were different for me today, I wasn’t feeling needy, or dependant.

Our specialist and physiotherapist both gave us warm hellos when they noticed we were there and there’s something comforting when they recognise you and remember you. They must see hundreds of kids and parents, they are always busy.

After Josh’s x-ray we sat in the Dr’s office and the film popped up on his screen. He was showing me the bone, the whitish markings here and here… he was showing me the angle of the joint, he was showing me how nicely the hip-joint was seated in the cavity. All I was seeing was those dirty great big chunks of metal that were inside my kid. The plates, that you can feel as you run your hand down his side. The screws so large, so real on the screen. So scary looking. No wonder he can’t lay on his side.. no wonder it hurts.

So I listened and I waited. I listened to the Dr. saying it was healing, the bone was forming, he was doing well. I waited for the news that we would have to go ahead with the pelvis realignment… Waiting… waiting… and it didn’t come. He talked about the next surgery, to remove the pins, the plates and how long recovery would be and when to book time off and when to get x-rays sent. He spoke about another aductor release being done at the same time.  He said I didn’t have to come to Perth to see him if I got x-rays sent down from home. He talked about most likely not needing an epidural again, and 1 – 4  days in hospital.

To clarify I brought it up. “So, no pelvis surgery?” with a hopeful tone in my voice.
“No, it looks like we have had a win here” he replied. ” This outcome is as good as we had hoped, Josh will be able to continue to sit in his chair for many years”.

Oh, what a weight had been lifted from my shoulders. The shadow overhead seemed to dissipate and now Josh can look forward to the rest of the year off, just to get better. He still has a long way to go… but the road looks smoother now it’s been cleared for him.


10 responses to “Smoother road

  1. Oh lordy….I love hearing about your “adventures” with Josh…but god damn woman I’m blinking away tears…..sad tears that you and your boy have been through so much and happy tears that he has avoided surgery to his pelvis……and I love love love that photo of Josh!

  2. That is so great Josh doesn’t need the pelvis surgery, like Louise I’m blinking away tears as well.
    You are such a great mum Tania.

  3. that is great news for you all, especially Josh, what a releaf for you & Andrew, & a win that you can have the xrays done here, wow, finally a Dr that considers your challenge of living in the country, one less trip to perth needed. waho!! wishing Josh a continued safe road to full recovery, xxx

  4. So glad that someone is smiling down on you all Tan!!!!

  5. Just wanna say I love you and am so proud of you always in so many ways. You are an amazing woman my beautiful daughter, with strengths unknown to get you through all these trying times and the grace to accept those things you can’t change, the courage to face all your challeges and the fortitude to endure.Not to mention your funny sense of humour, your writing skills that bring tears to our eyes and your incredible talent, patience and skills in that amazing busiess you run. You’re a winner my child! Love always Mum xxx

  6. julie marchetti

    It has all be said.
    Thinking of you all as you keep on keeping on.

  7. I remember that day he went in for the consult. When we lifted him on the bed for the doctor he let one rip – “Pwowrr Joshy… …that’s rank”.

    The doctor also asked Josh to just “roll over a bit” whilst lying there.

    When I went to the auction, you didn’t see me sooking all the way to my car – feeling helpless for the little man.
    I can’t imagine how hard it’s been for you guys.
    Good to see things are looking positive. Give him a squeeze from Uncle Chris.

  8. So good to hear positive news for Josh and you all. Here’s hoping for a continuing smooth road

  9. Fantastic news. Some breathing space for the rest of the year. I think you should have a holiday somewhere warm. And I’ll come too. xxx

  10. Great to hear the good news Tania, fingers and toes crossed it keeps up and Josh is as comfortable as can be …. you sure are a marvelous Mum…. beautiful photo of Josh for sure….

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