Royal Children’s Hospital Stay

Just when I think things can’t get any more intense, life seems to crank up the stress lev’s that little bit more. The past week has probably been one of the most challenging times for our tribe and mostly for little Chiara. There’s nothing worse than seeing your child in pain, and the post-op ward definitely magnifies this.

 

Maur and I sat in the parents waiting room, along with other anxious parents waiting to hear our child’s name called. We both leapt out of our seats, as soon as we heard the doctor call out “Chiara”. We were both so anxious to get to her quickly, as our last post-op experience was harrowing seeing her wake up in so much pain and delirium.

 

We felt a huge sigh of relief to find her quietly sleeping, the only sounds we could hear were the beeping of various machines and faint cries of other children. You could literally see our shoulders drop with relief, both exchanging how thankful we were to see her relaxed and pain free. Although, as parents, we were both still very much confronted to see her hooked up to machines, breathing tubes and wires. But as long as she was comfortable, we felt in control.

 

So often, Mauro and I have witnessed Chiara endure huge amounts of pain. Her little body has been though huge amounts of distress and discomfort. As we stood at either side of her bed, looking at her so peacefully she began to stir. Then all of a sudden she was screaming in a way we had never, ever heard. Doctors were concerned, as she had a pain-block similar to an epidural, as well as morphine and other very strong pain relief. So why the cries? All we could do was lean in close to her body and try to calm her down. Yet nothing, not even the pain med’s were helping. In these moments, all you can do as a parent is surrender and pray, because everything else is unbearable.

 

Oh my God please help her, please make this stop…. Mauro and I took turns to lay next to her while nurses, doctors and the anaesthetist tried to work out why she was so hysterical. This level of intensity from Chiara went on for so long, it was harrowing. Especially because we could not hold her, as she was bound up in a heavy hip-spika cast and attached to so many medical leads. Every tiny movement, seemed to cause her a crazy amount of pain.

 

At one stage I held the top half of her body, closed my eyes and prayed with such force. I silently called in an army of angels, Mother Mary, Goddess’… please work though me so that Chiara can feel some light, please, please… tears were streaming down my face. The pain is as infinite as love, so deeply woven together in these moments. The pain in seeing my child suffering, coupled with the knowing that when we do leave the hospital, Chiara will still have her brain-injury, she will still have many battles and challenges ahead and that we still need to solider on, with love.

 

Like so much of this journey, we have to accept that some things are just out of our control. And that is a very difficult thing to accept, when it relates to your child and their health. So I hand it over to God, quite literally. I ask for help, I ask for guidance and I ask for strength. And you know what, it always comes. Because that’s what Chiara brings to us, an undoubted connection to faith, belief and hope. Our little miracle, along with her phenomenal sister Grace, continue to shine an incredible and powerful amount of light and love to our family. So no matter how dark things get (and for the special needs parent they can get very dark at times), we are always held in divine light. The blessings in the paradox’s.

 

We have been back and forth from the RCH since Chiara was only 10 days old, we’ve had over 300 appointments, three operations and many more to come. Not to mention three overseas intensive-therapy trips (no, they are not holidays, no even close!) and weekly therapy appointments in Melbourne. And through all of this, we have been deeply humbled by the continued support of our family, friends and Chiara’s community at large.

 

Our days are full with therapies and so much more, to ensure both Grace and Chiara reach their highest potential. We have adjusted to our new normal and sometimes we get so used to the way life is, that we almost get shocked when we are reminded that life, is for us, very different. These seem to come when we have big hospital stays, or when we see Chiara next to children her age, we see the discrepancy between physical abilities, and communication. I remember reading a Father’s account of raising his daughter with cerebral palsy and he said life was normal, until they left their front door, then they were reminded how delayed their child was when they went out into the world…

It can almost feel like an explosion on the day you receive the initial diagnosis, and together as a family you pick up all the debris and try to put it back together again. But it is never the same, as much as you try to create the life you previously had, the foundations that were once there, have fully disappeared.

So through the rubble, the dust and the fog, you find your way back to the light.

For us, our journey has been life-shattering, life-changing and life-affirming all in one.

Looking back over the past three years, I watched as the foundation of our family, our marriage and life as we knew it fall to pieces. It had to, because life needed us to change, we had to re-adjust and find a new way forward. Just as Mother Nature shows us with her brilliant seasons, some things need to die and fall away, in order for new growth to shine.

And that’s exactly what we intend to do, shine forth with faith….

 

If you need some extra inspiration, you must watch this!

 

 

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