March 18, 2020- COVID-19

We are 6 days in to a self isolation/ social distancing lifestyle as a family with the threat of the COVID-19 looming around us.  We are staying home as much as possible, only going out for necessary outings or low risk appointments, and being extremely cautious and careful when we do.  Our whole family knows that we are on protection mode for Heston.  We know that for the rest of us, this virus would likely be mostly a minor inconvenience, but for Heston, it could be a threat to his life.

Heston has regressed to the point where his brain doesn't always give the signals to him around proper swallowing, etc.  He drools a lot, and while we don't see too many other symptoms in this area, he does sometimes cough and have slight trouble managing his own saliva.  This puts him at a great risk for aspiration. Should he be infected with a respiratory virus such as COVID-19,  whether it be from the virus itself, or from aspiration around the symptoms of the virus, it would almost surely lead to pneumonia.

Now this is not a new threat to him.  In fact our family has spent the last 2+ years trying our best to keep any such illness from our boy for this reason.  To be honest, we are used to carrying the weight of this reality and the stress that comes with the fears associated with it.  But there is a difference this time- a new heaviness, an added weight to the stress so to speak.  

I have been following news out of Italy where the virus has caused all sorts of shortages, where medical equipment like ventilators have become in short supply.  We hear stories of medical professionals having to make unthinkable decisions of who gets the equipment and who is left to suffer simply because there is just not enough to go around.  And while my hope would be that there is no way our system would come to that, if it does, realistically I don't see a boy who is in his final stages of a terminal disease getting the equipment ahead of someone who has potentially many years left to live.  The thought that we could not only face Heston suffering from this illness, but on top of that not having life saving or at least suffering limiting equipment because our health care system is overloaded is a fear I don't even want to visit.  If our seniors population (which is very high in Victoria I might add), is greatly affected, and those with complicated health are all affected at the same time, this could become a reality.  And even if Heston himself doesn't get the virus but takes a natural turn for the worse with his disease, we could struggle to get the help he would need if there is no room for him.

And so I am doing my best to make the most of each day, not allowing this new heaviness to weigh me down.  It has been especially hard without our Canucks hockey to look forward to, as it is usually such a great mental distraction for especially Jordan and I.  Our boys have been absolute champs and haven't complained about being home at all.  They are constantly entertaining each other, finding all sorts of things to do, mostly in the form of various games.  In fact, with a large family like ours I am finding it harder than ever to get some alone time which seems ironic since we are technically socially isolating.  And we are finding ways to be thankful for things we normally would take for granted- like that boys naturally use less toilet paper than girls;)  Thank goodness we have so many boys!!

Oh how I wish we were on the other side of this pandemic, that the fear of the unknown was behind us and life could go back to normal.  But since we are in the beginning stages, I want to enjoy and make the most of this added time with all of my boys, particularly with Heston.  I know I will look back and realize that this quality time is a gift and I need to do my darndest not to let it go to waste.

So I want to say thank you to so many who are making the extraordinary effort to self isolate for the elderly and the vulnerable, like Heston.  So many times we say it takes a village, and in this situation it really does.  If we all do our part, we can move past this sooner rather than later.