Having a child with a disability can be heartbreaking. And terribly difficult. Having two? Or three? I can't imagine. Sometimes I try to, and it's a good perspective builder. Our lives are hard, but they could be harder.
Sometimes all I have to do is think of my parents, who lost a child. How on earth can you survive that? They did, though, even if they thought they wouldn't. They epitomize strength, grace, and optimism. I love and admire them so much. And I have always been grateful that cancer is not one of the things we've had to confront -- not yet, anyway.
But now we may be joining the ranks of people with two sick kids. Because it's looking increasingly likely that something is wrong with Saskia. For the past year or so she's been under medical investigation. There are signs of an autoimmune disease like lupus. There are also signs of a hematological disease. Those signs are still ambiguous. We may not have a definitive diagnosis for another year or more. And I am scared to death.
The visits to PCP and specialists have begun again in earnest after six months' reprieve. I am trying hard to avoid Google. Trying hard not to imagine the effects steroids would have on Saskia if she has lupus and has to take them. I'm reading the headline Nick Cannon says, 'Lupus is eating my kidneys" and thinking, Shit.
But then, there are entire towns in the south and mid-west that have been wiped off the map. Entire families have died, sucked up into a deadly maelstrom of wind and debris. What we have, we can live with. I think.
We have two people to help us on this journey -- they've helped us through all our journeys -- who have lived through any parent's worst nightmare and come out of it whole. They'll get us through -- won't you, mom and dad?