The first grandbaby- and the grandmas aren't here.

My daughter Charity is in labor right now.
Our first grandbaby is coming. His name will be Michael Ramon. Our house will be busy tonight with Charity and her husband staying with us to be close to the hospital, and all of the rest of us.

But there will be people missing. Really, really important people.

That's the thing with grief. And loss.

It never really goes away.

There is no magical "closure."

It goes with you wherever you are. On trips. To birthdays. Weddings. And the birth of your first grandbaby.

Closure is such a nice idea. You grieve. Then you find light, and it all slips away.

It's wrong. And nobody should expect it of themselves or anyone who has experienced a loss. You can't make up for a loss with a new happy event. You can enjoy the event, but the missing goes with you.

Tonight and tomorrow my daughter will be in labor, holding the hand of her new husband, looking forward to her new son. And she'll be missing her mom and dad, who are no longer here with us. She wishes they could see her smile. Her new family. Her happiness. I am sure they will, but they can't be there in person to hug her and see their smiles in their grandson's face. My heart breaks for Charity that she has to share such a moment with such sadness.

I'll be on standby as one of the grandmas. There are a lot of us in the family. And as much as I am eager to meet our newest generation and to see Charity holding her baby, there will be a hole in my heart. My Linda should be here. She watched Charity grow up as much as we could, and she wanted her in our family. She loved babies. MY Casper loved babies and helped make Charity a part of this family finally. She wanted nothing more than for the girls to find happiness and safety and security. To have a happy ever after. To take grandkids fishing and camping.

And tonight and tomorrow the rest of us will be there. We will celebrate. We will love Mikey heart and soul and share all our bad habits and fun as he grows. His aunties will spoil him. We will share the memories, and the sadness will be less. Because we have someone new to share the joy.

Four months later- why can't the world stand still?

December 9th, 2013.

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.

Four years, four months...anniversaries just stink

Tomorrow at noon it will be four years since my Linda breathed out her last breath in my arms. Four years since Casper told me I could turn off the O2 concentrator- "she doesn't need it anymore- it's not helping now." Four years since the hospital bed was in our living room and was piled full with Kerry and Chloe and Charity and Kelsey and Trevor and Fuzzy and Babbles, and since I tried to pat each head and keep an eye on each one as I watched the life drain from Linda after more than two decades of loving each other.  

It was Good Friday. She was dying. She did movie trivia at 6 am. Typical Linda, always remembering more than any of us would ever know. At 8am she was asleep. Shortly after she was unconscious. I panicked. We had a nurse there with us, but I wanted Casper. She was my touchstone. She promised Linda she would be there at the end. I needed that to be true. I used her personal number. The "don't use this unless it's really an emergency" number. She answered. She had a busy day. I described what I was seeing. I knew what I was seeing. I used to be a hospice social worker. I suddenly wanted to be in denial and not know what we in front of me. After all the days before of thinking it was the end, this time it really was. I can talk a good game. I can look brave. But when my wife is dying, really truly dying, it is so absolutely not okay. 

I took off the oxygen mask. I turned off the O2 concentrator. It was suddenly quiet after years of that noise. The house was full of people. All I could hear was that the concentrator  was off. Two hours of struggle later, it was over. I knew she was gone an hour before. My hospice training kicked in. The exhaustion kicked my butt. My back hurt. I wanted privacy. I had a crowd, and kids, and pets, and my wife was dead. The whole time in those last hours it was Casper whose eyes I looked at. Every time I looked up she was staring intently at me. I asked later and she said she was just checking to make sure I wasn't decompensating with all the kids and activity/ But her eyes, those intense baby blues, were locked on and calmed me down. It was "everything is going to be okay. We talked about this. It's okay." She called our doc and he escalated meds. The pump flowed faster. Linda has no pain, no discomfort despite dying from pulmonary fibrosis, one of the most evil diseases ever. She never felt short of breath. I knew I had kept my promise, and she went home, just as she wanted. She could not fight any further. She'd said her goodbyes. Every child had been given a Mama or an Aunt Linda moment. We'd hugged and held one another in her hospital bed, and said our final goodbyes. 

And yet... who can ever, ever be ready for their beloved spouse to die? I can tell you form where I sit- absolutely nobody. No matter the age, the cause, the relationship. It's never okay. It is survivable. But it's not okay. 

As I type this Casper's birds are asking for attention. Linda's kitties are too. I am finding that after four short years, years that feel like weeks to me, I am having to introduce Linda to people in my planet who never knew her. I'm explaining our kids adoption days; vacations; how we met; how she dies- the really important stuff that makes you who you are, who you were, how life was- all of that is now my memory and I have to make her come alive. When I say she was my Peter Pan someone may not know she had a grin that lit up a room. They don't have my vision of her on the dock in Catalina on our honeymoon where she was bent at the waist and smiling ear to ear in her overall shorts. They don't know she would do just about anything to have fun. My new grandbaby will never know that Mama Linda would have been the ultimate Tickle Monster with a grandchild and the most adoring grandma a baby could ever ask for. 

Four years, and it feel;s like she's being erased. ever so slowly, from the present. 

I sign her name to cards. I do flowers at church in her memory. I talk about her. sometimes to the discomfort of others. I know it's a little weird to some of you that I have been widowed twice now. That I married her nurse. That she died too. That Linda and Casper are mourned equally, in different ways, even though Linda had more time with me. When I miss one, I miss both. The loss of one is the loss of being loved, completely and totally and absolutely. That's not a complaint. Few people have been loved as I have even once in their lives. I have twice. And yet as I approach tomorrow, my thoughts are on the incredible loss of that love. The pain of that last breath. Not for her- for me. 

Tomorrow I have to show up for work.. Sit through a meeting. Sound like I am listening. Where will I be? In my other universe- the one four years ago. Wishing that they were both still here. There is no way I would have made it through that day without Casper looking directly at me. There is no way I could have let her body be taken away without trusting that she would be respected and protected. 

And now, four years later, I will spend time tomorrow with both of them, in theonly place that is safe and quiet and that has a place for them. I'll have yet another chat. I'll tell them both that this is really unfair to all of us. That our meeting has to be a cemetery. And then at some point later this week I will swing back into the here ad now and real life, and begin having to explain again who they were, how much I miss Linda, how yes, I miss Casper just as much, and that no, I am not toxic and do not kill people. I will smile at the stupid jokes, and keep my chin up. And then, at night, the tears will come as they are tonight. Because no matter how ready, no matter how terrible the disease, it is never, ever okay for your wife to die. Ever. And you never get over it. 

But you do keep on living. And smiling. Because that's what we do.