Celebration of Life

Saturday was David’s “Celebration of Life” ceremony. It was a beautiful tribute to a beautiful man. Hundreds of people turned out. The love and support was amazing. Much of the night was so surreal, as hundreds of people walked past offering kind words and consolations. There were moments where I felt like I was in a fog. Some sort of nightmare where I just couldn’t wake up. How could I be here…at my husbands’ memorial? How could this be happening? And at those moments I would start to shake. Like the night David died. I know this is when I’m going into shock again. Like I did that night. I start to breath shallow, and I get extremely light headed and a cold chills me to the core.

I tend not to even notice that this is happening until someone says something. Like last night, an old friend came up and asked innocuously…are you breathing? And I realized. I wasn’t. I don’t know if he noticed a change in me or not. But I wasn’t doing well at that moment. And as I looked at my hands. I was shaking all over. And I was so cold. But the moment passed and I started to take slow deep breaths. But I get this way sometimes now. When I think about that night. Or I think about my future without David. Or my future at all. And I think I tend to sometimes just start to shut down. But I pulled myself back together. And the moment passed.

It was good to see so many people from our journey through life thus far. At moments I was touched by the words of comfort people had, others were inconsolable…mourning the loss of David, and others were speechless. But all were kind, loving and compassionate. Many didn’t know what to say. But what can you say? He was too young. Yes. But what David crammed into that 37 years, many don’t do in an entire lifetime. And his “celebration” was so fitting. The live butterflies exhibit, full of peace and serenity. A symbol of life and metamorphosis for David.

The glass “guest book” was perfect as well and now is a permanent symbol of all the love and support that’s surrounding us and hopefully will continue to surround us in the dark days ahead. David had originally intended us to make a piece, but as he went quickly…there just wasn’t the time. But there never is. Not to do everything. But I went to a gallery and found this piece as I walked in the front door…and I knew this was it. It was perfect. The base is three figures; symbolic of David, Alec and Me. And the glass basin, is a fused glass piece made by a local artist who is too a warrior in the battle against Cancer. And as it was just waiting for us…for this celebration…I knew David was smiling. Because although it wasn’t quite what he had envisioned…it had the essence.

The “Sweets” that David had selected were a hit as well. He had been so specific. Brownies. Fudgy. No nuts…No icing. I can’t tell you how many times David bemoaned a perfect brownie ruined by those dastardly nuts. So…fudgy brownies it was. Also, there were root beer floats of course. David was a connoisseur of Root beer and that was the first thing he requested for his celebration. And then there was cake, a coffee bar, and a chocolate fountain. David always did love his sweets!

The dessert stations were spread through the streets of Old Milwaukee in the museum. And as I roamed the cobbled pathways, I was warmed by all the love. People were gathered in little clusters. Some laughing, some shedding tears. But all were sharing stories of David. Recounting little moments of his life. And it was beautiful. Because so many people were there that night, from so many different paths of his journey through life.

David’s celebration was perfect. Or as perfect as a night can be when you are celebrating the life of your beloved. But I could feel David’s smiling face and the joy from bringing all of those people from his life together in one room. To celebrate him. He wanted us to remember his life and who he was. The man and his amazing capacity for love and life. He understood that people would mourn his death, but he didn’t want to be remembered how he died. He didn’t want to be remembered in death, he wanted to be remembered how he lived. How he choose life over death, all the way up to the very end.

A Hollow Shell...

The morning after David passed…the sky was rainy and overcast. As if the world mourned the loss of such an amazing man. Honestly, I don’t know how the world continues on without David in it. And to be honest, I don’t know how I do. But that’s the beautiful and horridly painful thing about life. It continues. Life wretchedly moves on.

I feel as if my life stopped that day. Because David was such an integral part of me. When he died, so did a piece of me. Right now it feels like all of me died that day and now I’m just a hollow shell. Going through the motions. But not really living. And my future now seams bleak and lonely…because David and I were always meant to be together. And now that he’s no longer here in a physical form, I feel bereft and alone. I know he watches over us. David always said he would, and you know he always did what he said he was going to do…no matter how unlikely or improbable.

He said he would be there for the rest of our days, watching over and taking care of us. And that he would always be listening if we wanted to talk, although he might not always be able to respond. And he said before he went, that he didn’t understand how this “whole thing worked” but that he would be waiting for me. And I know that he will wait, like he said he would…because honestly we could never go anywhere without each other. And sadly, that is the one thing that gives me comfort right now. That someday we’ll be together again.

I try to be strong. David wanted so much for me to be happy and enjoy the remainder of my days until we could be together again. But I feel I'm a pale shadow against the greatness that was David. I feel that along with with him...left my strength, conviction, will to live and enjoy life. As if all hope left my world along with my best friend.

I know I have Alec. And I adore him. And I will be his mom and love him…because he so desperately needs me. But skye…the woman. She is a sad, shell of what she once was. And I don’t know how I will survive today…tomorrow or the remaining years of my own life. I hope I can find the peace that David so desperately wanted me to. I hope that I will be able to move beyond the pain and loneliness. But in the days following the loss of my soulmate, I can’t comprehend it. The moment we met…we were connected. And although that connection will never go away and we will always be a part of one another….it seems like an eternity until we will be able to be together again. And I not only mourn my love…but I mourn the loss of our future together.

My Brave Warrior is at Peace…

David passed Monday night at 8:53 pm. And I feel like I died the moment he did. He went very fast and skipped most of the “crap.” They said he couldn’t skip the crap…it was inevitable with a brain tumor…but he said he would. And you know David. When he spoke in that one tone of conviction and he said he was going to do it. He did it. So, he said when it was time he would go fast and easy as possible. And he was true to his word. He skipped the seizures, the delusions, and the coma. He skipped much of the nastiness. He was David to the very end…which in itself is unheard of. But David always did like the break the rules. He was up and moving about Saturday morning and by Saturday evening he was bedridden in a hospital bed. By Sunday he wasn’t very communicative. He no longer opened his eye, spoke or moved much. Periodically you could get a nod of understanding from him when you asked him if he was cold or needed pain medication. And he would hold my hand and periodically stroke it. But that was all.

That night I knew he was getting close. I crawled in beside him on his hospital bed. Like we had done so many times before. But this time it was different. Because when he was in the hospital…he was just recovering. Just tired. But he would hold me and stroke my hair. That night I was the one who held him. Stroked his chest and soothed him. At first I was unsure if he even knew I was there…but then he tried to roll over and hold me like he always had. And he would try to reach out for me, although his arm wouldn’t cooperate. And I knew he could feel me beside him and he seemed at peace. He always said he was a peace if I was near him…and it was all I could do at that point. So I lay next to him all night. Held his hand and gave him peace.

By Monday morning he no longer was able to nod or move. He was unresponsive to my touch and was unable to even squeeze my hand. I know that even then he still knew I was there and it soothed him. You could tell by his breathing and at one point as I was talking to him…he even gave me one last smirk. I talked to him a lot that day.

At the end he took his last breath as I sat beside him…holding his hand and stroking his arm. He waited for me to get back into the room and then he went after one last big breath. He went peacefully and I knew the moment he was gone. My Brave Warrior is at peace now. His is no longer in pain and he will no longer be encumbering by a failing body.

Me? I’m no so well. I am not at peace. I feel like a part of me died when David did and that I will never feel peace or joy again. My body is hollow and I’m just going through the motions at the moment. Unable to feel like I will survive this…even for another moment.

The pain is unbearable and sometimes I feel as if the pain will drive me to insanity. And yet I’m still here. My beautiful warrior has been gone for almost three days and I’m still here. I don’t always want to be. But I am.

The question of the hour…

Everyone has been asking me the same question as of late. “How are you doing?” Honestly I don’t know how I’m doing anymore. I’m surviving. That about sums it up. I’m doing the doggy paddle as I swim through all of this crap. Treading water really. Just trying to keep my head above water. I go under periodically but a kind soul is always there to give me a little help and pull me back up. And I continue on…

The days are beginning to blend and I’m not as aware of time passing because everything is a blur of caretaking, exhaustion, concern and sadness. We have little moments of joy each day and I hold those close to my heart...buoying me through to the next day.

I’m trying not to focus as much on the future…because that is just too much for me to bear right now. A future without David is unimaginable at the moment and best not to dwell on. I will have to face that future soon. But right now I need to get through today. Get through tomorrow.

My focus right now is to make sure that David and Alec are getting the care they need and trying to create little moments of serenity and smiles amongst all of this. Eat somewhat regularly and get sleep where I can get it.

David continues to remain David. Which is unheard of with a GBM at this stage. He still has his sharp wit and his memory is quite good. But he continues to get weaker by the day. Many days he doesn’t leave his room and when he does…he is only able to move a few feet before becoming exhausted and unstable. Watching the love of your life slowly fade away is brutal. And as I watch his body slowly fail…it is killing me inside because there is not a damn thing I can do. I can keep him comfortable and warm. I can make sure all of his needs are being met. I can love him. But I can’t stop the cancer that is slowly killing him. It’s an amazingly helpless feeling and I hate it. Actually there are a lot of things I hate about it. But really, who enjoys cancer?
So, I have no clue how I will survive the next leg of this journey but I will. Somehow. Because I always do.

And so it begins…

We’ve begun the next stage of this amazingly difficult journey. Things have progressed and hospice is now on board. It’s not altogether surprising…and yet it’s still tears at my soul. We don’t need round the clock care but we do need pain management support.

We progressed to the next level last Saturday night. We have all noticed the gradual decline in his strength and energy. But Saturday night things spiraled downward at a rapid pace and it was bad. Really bad. He was acting a bit wacky and was in so much pain. The vicodin wasn’t touching it and there was nothing I could do except make him as comfortable as possible and try not to go mad watching David get sick and be in pain.

I don’t want David to ever have to be in that much pain again. Ever. So that’s where hospice comes in. We’ve met his nurse, who was recommended to us by a dear friend in the field, and she is lovely. She’s kind, gentle and proactive. Exactly what we need. She’s helping David to manage his pain and gently preparing us for the next stages as things progress. This whole thing sucks unbelievably…but at least we know that David’s needs will be met at any time of the day. I have someone to call if things go down that dark path again. I won’t be alone at 3 am, helplessly watching David in pain ever again.

So here we are. Just trying to get through the days. Sometimes just trying to get through the hours. David is still “David” and that is a gift…especially at this stage of the game. But it is still hell. No matter which way you slice it…and it will continue to be hell.

Alec is doing amazingly well considering that his entire world is topsy turvy. He’s taken up more of a “caregiver” role. He gets daddy his cane, covers him when he’s cold and pulls up his little chair to sit beside him…”petting” him as he likes to say, to make daddy feel better. Basically he’s mimicking everything I do. The other day he pulled up a chair and declared he was going to read to daddy. It was so precious and yet heartbreaking. To see our little boy by his daddy’s bed, reading him stories and curling up beside him. I’ve read many books on children and bereavement and they say that Alec being a part of events happening is the best thing we can do for him. Otherwise, if we hide it or exclude him from it…it will create serious issues down the line.

So, although the things he’s doing for David are simple…they mean everything to both Alec and David. And I’ve been told that these memories of Alec reading to his daddy and snuggling up beside him while he rests…will carry Alec through the years. Will help him somehow move beyond all of the pain and loss. Because even at 3 ½ they want to help and be a part of it. And being able to do this has given Alec comfort and a feeling of usefulness in a helpless situation.

So, I watch my husband and our son snuggle on the couch...watching shows or just resting together in peace. It’s one of the most beautiful and tender things I’ve ever seen…and it breaks my heart.