I was recently asked to deliver our story at the kick off for the hospital foundations first big meeting for the year. With our boys condition, this was not the first time we have been asked to tell our story and I hope it is not the last. We have been told on countless occasions by people from all walks of life that it is a powerful story and one that is both inspirational and moving. Having lived it, I can see the resemblance to neither. Though, both of us deemed it as an honour to fulfil the brief of bringing a sense of realness to the meeting. So as I stood there, in the back, mentally preparing to once more tell our story. At that moment, my mind flicked to an article that Jayde had shown me a few days before. The article was written from a mum whose child also had a chronic disease and really placed a perspective on what it really means to be lucky. My reflection was quickly shattered as the group were asked to recount something positive and fun that they had done over the christmas break. I listened. I felt my eyes begin to water. I was thankful that they had opted to do this outside as I had the protection of my sunglasses. The stories that were recounted of the christmas break were amazing. They ranged from having a barbecue in the backyard to playing on the beach and letting the kids squeal with delight as the waves chased them up the beach and flatten their newly built sand castles. Thank god for the sunglasses. So this was what “normal” was.
It was at this point that I realised, I have no idea what normal is. I can never stand there and criticise another parent for allowing their child to take their hands from an unclean surface and stick them in their mouth. I have no right to make a comment towards a parent for allowing their child to lick dirt from the ground or eat a mud pie, or even share their food with a sibling. I do not have the experience to comment on someone allowing their child to not have at least one medication in a 24 hour period. If I was asked to take care of someones child that did not have a special need like line care, testing of a nasal gastric, administering medication every few hours, ensuring that the 1300ml of fluid intake was adhered to or writing down every bowel movement or urine output in a 24 hour period, I think I would freak out. I am sure by now, to the idle passer by, that we must make it look like a breeze. A simple process of “this and that, must equal everything”, but that couldn’t be further from the truth. The analogy of the duck swimming is befitting, but I would say that it would be more like a duck swimming up a waterfall. It is at this point that I measure our luck. I have often wondered if am a terrible person as I often find myself gauging my luck on the severeness of a the boys condition. I find myself thanking the stars that they have a chance as I look around and see the world around me that is a hospital. The care requirements of our boys shallows in comparison to some of the other kids out there and I find the tears welling in my eyes as I think how lucky we are.
As I spoke the words of our story, I could see that I was not the only one with something in my eye. For me, it is an easy story to recount, if they were only just words. But they are not. The experience is there, the highs and the lows, the laughter of seeing both our boys quite literally taking many of their firsts in the hospital. I spoke of many of the positives that we had experienced, glossing over most of the negatives as these are often too hard to talk about. Watching Levi taking some of his first real unaided steps on one of the wards, seeing Jude start to crawl across Levi’s transplant bed. How lucky I am, as a dad to have had so much time to spend with my boys as they navigate their way through some of the most difficult times in their lives, and they have not even made it to puberty. That is how I should be measuring my luck. I shouldn’t measure it on the success in the lotto, nor the ability to grab the perfect seats at a concert. Luck should be measured on ones ability to keep their child safe, from themselves, from others, from the unseen and from the unknown. How is this possible to keep your child safe from all of this if it is not for luck. No one has the right to comment on how lucky you are if it is based on their personal values and experience of what luck should look like. It would be lucky to see every bed in a hospital empty with the eradication of every type of cancer and genetic disease from this planet. But, I can’t take luck to the bank. What I can take is positivity, though more often than not, this is being tested more and more to the breaking point. Of late, I am more often than not, finding myself in an internal battle with negativity and disappointment swallowing any trace of positivity whole and crapping it out just as fast. I am worn down. How much more is left in the tank of positivity.
We have both had long discussions on whether we have done the right thing with putting Jude through the system so soon after Levi. With Levi only just recently hitting a year past day zero, this line of internal question has never sounded so much louder. Then, as quickly as the question is asked, we find ourselves countering our own argument by reminding ourselves of the importance of giving Jude the most out of his life. Both our boys are amazing, and I have always said, that if you were to take away their genetic disease and the need for all of the hospital visits, we would have the most perfect family in the world. But, there is always that dark shadow, that constant reminder, the fear of what tomorrow could bring. That is not “lucky”. As Jude approaches day 80 of his 180 days of protective isolation, the realisation of going home is becoming more and more real. With the thought that our safety net being ripped from under us and are once again thrown to the wolves of reality and “normality”, we are scared. The family will remain under strict protective isolation, and neither boy is cured yet. The possibility of a rejection for either boy will continue to remain. With the studies only showing 5 years out, we are in pioneer territory and the “wildness” is looking like a very scary place right now.
So is it ironic that I say that we are the luckiest couple in the world? I don’t think so, based on my somewhat distorted view of the world. We are blessed with two of the most amazing and resilient children that I have ever met. Their patients and virtue would make most adults blush with a level of shame. Their sincere honesty, although often heart wrenching, is an attribute that was striped from most politicians. They resist the urge to be disappointed when faced with the most disappointing situation that would make even the toughest adult disappointed. They hold back the tears as they are stuck with a barrage of needles for the seemingly never ending tests that would leave the toughest person a blubbering mess. Whilst all of the time, they turn to us, for the strength to continue, the strength to fight, the strength to persevere through the assault of treatments that they need to live a “normal” life. I fight the emotions, every day. The people that surround us whilst we are relocated can see the strain and pain written across our faces, and in the words we speak. We hide the turmoil and fear that we face daily, for the sake of these amazing little soldiers. This moment, this time, is theirs and theirs alone, and not a day goes by that we allow ourselves to forget that.
