Well not much to report in regards to Toby - he has been doing SO well. It is so hard to even remember what his body is dealing with when he looks so good. I’m getting very paranoid about winter coming and all the bugs it brings, but not much we can do about it!!!
I came across this post on Facebook last week by a Mum of a boy here in NZ that has Cancer (unfortunately a far more serious type than Toby). It really hit home and got me thinking:
“I should have just dropped baby off at crèche, we should have blasted the sounds on the way and sung or little hearts out on the way like we did every morning. I should be now sitting in my office, lost in my chapters. R*** should be at work. I should be clock watching so I can shave a good couple of hours off my day to pick bubba up early and go play. But I’m not - I’m packing a just-in-case overnight bag, getting meds sorted, telling our neighbour she may need to feed our cat tonight, consoling C**** after telling him he can't eat because he is having surgery, fixing my mascara from tears already and packing us into the car. Our actions are followed everyday by so many other families. We will chat in the waiting room, put on fake smiles, make idle chit chat to cover the angst we are all feeling inside. Just another difficult day on top of an Everest of difficulties to date, this one particularly so. If I ruled the world it would work on a trade system. I would have mums dads and grandparents lining up to trade places with their children and mokos in a heartbeat I’m sure”
“I should have just dropped baby off at crèche, we should have blasted the sounds on the way and sung or little hearts out on the way like we did every morning. I should be now sitting in my office, lost in my chapters. R*** should be at work. I should be clock watching so I can shave a good couple of hours off my day to pick bubba up early and go play. But I’m not - I’m packing a just-in-case overnight bag, getting meds sorted, telling our neighbour she may need to feed our cat tonight, consoling C**** after telling him he can't eat because he is having surgery, fixing my mascara from tears already and packing us into the car. Our actions are followed everyday by so many other families. We will chat in the waiting room, put on fake smiles, make idle chit chat to cover the angst we are all feeling inside. Just another difficult day on top of an Everest of difficulties to date, this one particularly so. If I ruled the world it would work on a trade system. I would have mums dads and grandparents lining up to trade places with their children and mokos in a heartbeat I’m sure”
I often have days like this where I think of what we should be doing as a “normal” family. Toby should be at afternoon Kindy having fun, learning new things and making little friends and I would be making the most of the time away from him by catching up with friends, having a wee nap, exercising, baking, shopping, running errands etc or perhaps by now I would even be sitting at home bonding with a new baby?
As a family we would get out more to playgrounds and fun public places and away on more family holidays.
As a wife perhaps I would be enjoying more date nights or weekends away with my husband.
Maybe I would have more time to do fun things with Sam instead of having my time taken up sitting around hospitals, keeping records of medications, appointment dates, beads of courage earned, blood test results etc, giving medication, making sure bags are packed ready for emergency hospital trips, packing and unpacking when we head to Starship, taking temperatures, making sure everyone is washing their hands and sanitizing so often, trying to entertain and educate Toby on my own, keeping blogs and of course fighting against people who try to claim they can cure cancer lol ;)
