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Sands through the hour glass

How does that intro go… “Like sands in the hour glass, so are the days of our lives”, or something like that. I never really understood that metaphor, well to be honest, I never really gave it a second thought whenever I heard it as background noise as I went about my business and someone had left a television on. It seems that father time has no limits, cares or concerns for those around him. With everything that is going on, that sand just keeps on falling. I am not sure who I should really blame for that falling sand, Newton or Einstein, your theories are just a right pain in my backside. Why can’t our lives just be suspended in time so we can return when it is normal. But, alas, it is the complete opposite, as it continually seems like time is just accelerating and we are on this whacked out roller coaster. So fast are we accelerating that we have not had a chance to jot down any of our thoughts and experiences with these two amazing boys.

Where do I start. one may say from the beginning, but that would be too logical. Logic left the building sometime ago, and similar to a “No Junk Mail” sign, there seems to be a “No Logic” sign painted on the driveway. Yes, the driveway, for those that were not aware, we are home. Our beautiful, if not somewhat in need of some repair and TLC home. We had a visit from that dark mistress called depression, who just decided to swing past and grab a coffee and overstay her welcome. It was sort of like one of those long lost relatives who just turns up on your door and asks to move in, sort of awkward but you know that you just can’t get rid of them. Let’s just cover the last month, that seems like the best place to start.


On the 1st of March Jude hit the day 100. There were no balloons just another sigh of relief as we travel this road. Around that same time we were given the green light to come home. Needless to say, we were sort of experienced in this, though it still amazed us as to how much crap one collects in such a small amount of time. After several attempts at packing, we watched as RMH disappeared in the rear view mirror. Coming home was wonderful, this was the first time that Jayde had actually been home since October last year, so it was a real novelty for her. I managed to persuade our wonderful neighbour to pop in quickly with our impending arrival and run a vacuum across the floor which was gratefully appreciated. As the car was unloaded, and the back deck quickly overpopulated with bags, Jude was running on all cylinders. The ability to run from one end of the house to the other did not grow old. He was happy, happy to be home, happy to have his own room back, just happy.


It was back to work for me the following week, it was obvious to anyone that saw us that all was not well with our world. The boys were happy but we, not so much. I don’t want to bore you with the details, depression in itself, and anyone that has experienced it, is, well, depressing. It is normal to feel down, I would even go as far (with my not so extensive medical background) to say it is healthy. But the ability to bounce back, is what makes depression truly terrifying. By experiencing the lows in life, you truly appreciate the highs. Though when this mistress called depression came knocking at both our doors, it was a visit that was not unexpected and long overdue. I say that as this is not a sprint to the finish, this is like an endurance race, and we have both been running for so long. In the words of a colleague, “you look exhausted”. Those words couldn’t have come at a more appropriate time. We are so tired, in fact, we have had conversations about this, we need to create a new word as “tired” is becoming a bit tired. One thing to note from my personal experience in the last month, is, if someone ever tells you that they are depressed, the last thing they need is time to reflect. Loneliness may be a good aphrodisiac, but rest assured, it is not a cure for depression. So, this is as it was for a couple of weeks after we returned home. We became reclusive, family took a back seat as we continued with our lives. The occasional message from friends asking how we were doing was appreciated, though it became very hard to talk about it, so we both got very good with deflection.

On that note, both boys are doing extraordinary. Levi is coming ahead in leaps and bounds as he is progressively weaned off his medicine and although we are still so far away from a date that everyone is happy with, we are never the less closing in on it. Jude on the other hand still has a long road ahead of him. Coming into this, we were both worried. Thinking about the potential outcomes often brings us both to tears. But, he perservers to defeat all odds. Though, this is what makes us scared. Jude is the sort of boy that can hide things really well. We have said since he was born that he is either going to be an awesome street performer, or Australia’s leading neural surgeon. He is Brain to Levi’s Pinky, and Levi is very bright. His ability to act tough, makes it really difficult to pin point when things are declining. So we watch him like a hawk, looking for any little sign that something may be going wrong. His bloods are always an indicator for this, though that is an issue in itself. Having had so many needles, his veins have begun scarring, making it very difficult for them to take bloods. He holds the record for 5 punctures to get a full blood count.



Last week we attended yet another clinic visit. We were a little concerned as the boys consultant had specifically requested this clinic visit so she could catch up with us. Consultants are funny things, they are the brains behind the operations and you really only get to see them when things are going wrong, or in this case, they are on clinic that week. So it was with a sigh of relief that our consultant popped in to give us a regular, if not ordinary update on the boys and tell us that she was extremely pleased with their progress. During the visit, we were also engaged by a journalist for the Daily Telegraph as part of the upcoming hospital’s gold week charity event.


So as we come out of the month of March a lot has happened. Not so much with the boys and the medical side but more so on the emotional and phycological side. I have lost count of how many people have commented on how strong we are and how lucky the boys are to have such rocks as parents. But in reality I don’t know any parent that is hard all the way through. There has to be somewhere inside that hard egg shell to keep the soft squishy love, pain and fun.

3 replies on “Sands through the hour glass”

Oh jayde thanks for sharing i think often about how you are going. Having had that visitor come for coffee often and overstay her welcome i can somewhat understand how it can be. I have found that you are do busy coping in difficult times that its when you slow down a bit that it takes advantage and rears its ugly head. All i can say is its crap ontop of everything else i can only imagine. *hugs to you* xxx day by day 🙂

Jayde & Nate … Thank you so much for letting us know how things are progressing – not just with the boys, but with you both as well. You’re so right, logic is out the window here, because logic says that no one should have to go through what you have all been experiencing!!

We send you love & hugs from the West … not just for the boys to make happy & healthy recoveries, but for the both of you to fight your battles & come out even stronger on the other side!

You are an amazing family – and your honesty in talking about how you are feeling & coping, just makes us love & admire you even more!

Stay strong … And hopefully when things are brighter for you all, you can bring the whole clan over for a stay in the West!!!

Love Kylie, Ian, Benjamin & Samuel xxx

Hi Guys. Thanks for the update, and thanks for being so honest. It’s only by being so honest that people can appreciate all the dimensions of what having a children with health challenges means. This sort of honesty also provides such reassurance to all of us, because at sometime or other, we will all face challenges and the black dog will visit.

You guys are fantastic parents, you are well past exhausted, but you are not beaten. In fact you and the boys are doing a damn fine job of beating this rotten disease. Give the boys a hug for me M

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