At 4:33 PM my Casper took her last breath. We'd had weeks and weeks of struggle. A full day of horrible labored breathing and sky high pulses and blood pressure. Respirations were through the roof. At 4 pm it suddenly slowed down. There was this surreal sense of calm. Part of me hoped it was going to finally be time for peace- a time to say goodbye like I'd had with Linda. Part of me knew all too well I was seeing Chaines Stokes respirations and that Casper really was at the very, very end of life. After so many weeks of anticipating it there was this surrealness to the moment. It was just Jay and Jill and Casper. It was quiet. I can't remember if the country music was still on. Then thirty minutes later- silence. Just. Like. That. Silence... The love of my life, my rescuer and lover and wife and other half- was gone.
Jay and I looked at each other. Really? I remember as I sit here thinking- this cannot be real.
But it was. My blue eyed butch love of my life was no longer here. She was finally, at long last, with her parents, her aunt, my Linda. And I was very much alone.
No- I am not feeling sorry for myself. I was alone. I was surrounded by caring people. I have a large and loving family that includes Casper's family. I am so very very fortunate for that. Nobody blamed me this time. Nobody felt I had done the wrong thing. They all wanted her to be released from the torment of the Lewy Bodies. But then they all had lives to go back to.
I was the one who had to go to bed that night in our room. Alone. Jay was the one who had to begin to figure out life without his big sister. Four months later we are still figuring it out, by text message, 3,000 miles apart. "Hey honey- how ya doin?" "I'm hangin in. Bad day. I miss her." "Me too. I didn't know it could be this bad." And so it goes. Our worlds keep going. Work. Kids for me. Nieces and nephews and sisters for Jay. Bills. Holidays. The rest of you keep going. Your lives keep going,
I have a kid getting married this month. A grandchild coming. A daughter getting ready to move away. I am busy, as always. So where is my head? Reminding myself that Casper isn't waiting for me. I can stay out late and not worry about falls and fears and what the Lewies are up to- and I hate it. I wish she were home calling and texting and telling me to come home. I am online with other Lewy Body families still trying to figure this damn disease out in their lives and what they need to do to cope. I offer advice- and go back to that moment in time. What I really want is for the world to stop. Just stop. To say "where is Casper?"
The reality is that grief waits for nobody. Grieve privately, and get out of the way. Someone else needs milk. Clean towels. Mom needs me to go shopping. The cats are out of whip cream or tuna. I'm supposed to go to work. Who thought that was a good idea? You get 12 weeks off for a baby- and three days when your wife dies? What I want to do is curl up under a blankie and cry. What I do is curl up with Casper's t shirt that still smells like her, and cry and snuggle. And grieve. Heart and soul and body. Until it can't hurt any more.
And then tomorrow the sun will arrive, unaware that I am without part of my heart. I will try to focus. To avoid that anniversary date. To tell myself good job- 4 down, 8 to go till I hit one year. Like that will hurt any less. Jay and I will remember. Sandy never forgets. Some of the family will get the date. I will awaken after getting though one more night without her. I will remember. Relive. Cope. Smile when necessary.
And I will remember. The love. That smile. Those eyes are strong arms. The happiness we had for a time. The hope for a better future. Most importantly I will remember.
Four down. Eight to go.
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