Monday, 17 March 2014

In a perfect world this stuff wouldn't matter

As our family anxiously awaits Xavier's surgery date, we are struggling with the range of emotions associated with another hospital stay.

Unfortunately, the sad and most stressful part of it all is the feeling of having to rush back to work. Not because we want to, but because we have to.

Even with the latest addition to Employment Insurance for parents caring for critically ill child, it is restrictive and difficult to qualify (like most programs to get money from the government). And it is only up to 55% of our wage (although I would take what I can get).

Then there is Short Term Disability through work. Again, very challenging to get and the constant inference from the insurer is almost not worth the effort of applying. Plus, it is not my disability. It is my son's. I am not sick. However, I could argue the emotional toll it has on my psyche affects my productivity at work.

And the last option: to use up all of my sick days, all of my vacation days and all of my leui days to ensure I am paid for my time off. But this option leaves me no time to get sick or be with my family when everyone is healthy.

I am not interested in abusing the system, but unfortunately because some people have chosen to do just that, the rules are strict.

Taking a month off with no pay to be with my son while he recovers would be a huge financial burden for our family. I admit, it's our fault to have put ourselves in such a tight position with money. After the first tragedy with Xavier it would have been prudent to save and nice emergency fund. However, we were also recovering from nearly a year of both my husband and I not working to be with our sick child.

And do I regret our family vacations? NEVER. As important as money is, the time spent together as a family somewhere away from the stress and reality of his sickness, is PRICELESS.

But the point of this entry isn't to sob about our money problems (because everyone has them), but rather to highlight the unfortunate reality that there are many others put in this difficult situation. When a child needs surgical invention for a serious medical problem or is very ill, a parent should not have to worry about short-term money problems.

It would be nice for employers to step up and say, "Hey, we are behind you and will support you. Take a few weeks (up to 3 weeks) and we will continue paying you during this difficult time."

I know I know, only in a perfect world -- the one I often daydream about -- would this actually happen.

Aside from figuring out the finances, there is also the logistics of the situation. Only one parent can stay overnight in the hospital. Mark and I plan to share this responsibility but where will the other parent go. Especially for night one neither of us would want to be far incase of a complication. In this case, we are hoping there is a room available at Ronald McDonald House by McMaster. And this accomodation wouldn't break the bank. Having to book a hotel while on a tighter budget would not be feasible.

Then there is where our daughter will go. Sitting for hours at a hospital would not be appropriate for a 4 year old, but we want her to feel involved. She is already saying she is going to miss her brother during his hospital stay.

However, these things are minimal compared to dealing with the emotions of a 4 year child who has been told he is going for brain surgery and another 4 year old who knows her brother is going for brain surgery.

Neither can fully understand the situation and while they appear normal during daytime play, subtle signs and frequent night wakings are a clear indication this is weighing on them both.

I would like nothing more than to take away their fears and concerns.... and pain. It's a difficult journey. I am scared too, and feel sick to my stomach thinking about it and everything that he and her have gone through during the inital diagnosis.

But we are a damn tough family and although it's not a perfect world, we will make the best of what we're given.

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