Yesterday was the four year anniversary of Tony's first ALS diagnosis. I remember it very clearly... we met with the doctor, then went to the parking lot, hugged each other and cried. Then we went to Target...
It sounds flippant, but that's kind of an example of how Tony approached life with ALS. He just wanted to get on with things. He didn't shrink.
It is astonishing how much ALS changed our lives in those four years. Obviously, the biggest change is that Tony's gone now. Ninety percent of ALS patients die within 2-5 years of their diagnosis... he lived 3 years, 5 months, and 5 days after his. Losing him is an immeasurable loss.
And there's no "but" that can go with that.
Those years transformed us. We did things that average working parents of two young children wouldn't dream of tackling. We gave up everything to just be with each other. To borrow from another ALS patient, we collected moments, not things.
And now, the girls and I are thousands of miles from home, exploring the country where Tony was born. A trip that would never have happened if ALS hadn't entered our lives.
There's the horrible, and the silver lining. It's a conversation I have with myself nearly every day... it knocks me to the ground, and I try to reason my way back up. It's a conversation that'll take longer than 4 years, but I'll never forget what I've learned along the way.