11.30.2009

Out of the mouths of Baxters

Yesterday, right before naptime, Baxter said the following:

"Mama, there are three things that make me sad thinking about Daddy Mike.

1. when people talk about him.
2. when I look at the moon.
3. when I hear about any guys dying."

Then he asked what makes me sad thinking about him. I replied honestly,

"Sometimes, when I look at you and you look so much like him. But mostly, when I spend time with friends of ours who were close friends with Daddy Mike. It makes me feel warm and loved, but also makes me miss him."

Then I asked, " Does it make you sad when I say stuff like how you're a great dancer because daddy mike was? Or when I talk about things he liked to do? Like bake or perform on stage?"

"No. That doesn't make me sad. I get sad thinking about Brain Tumors and when he was sick at the hospital and stuff."

... now THIS is weird, cause I never talk about that with him. Ever. Once a long time ago he asked about how daddy mike died and I told him. But I never talk about it - or the hospital. There's an ad on NPR about Gamma Knife technology at a local hospital for brain tumors and brain disorders. I wonder if that jogs his memory. I don't know.

I asked Bax "Are you sure you're not just thinking about when you went to the hospital to see him? Do you remember going?"

"I don't think I ever went." he said. "Did I?"

"Yes you did - with me."

"When?"

"Well, every weekend."

"Every Weekend?" his eyes got big.

"Yeah. He was sick for a long time, so we went every weekend."

"Was he happy in the hospital?"

pause.

"He was happy when we were there and when friends visited. I think he was happy. Mostly he slept a lot, so I don't think he was thinking about it."

He rolled over in his bed.

"Bax, we don't have to talk about it anymore. If you ever don't want to talk about it, we don't have to talk about it. You just tell me."

quiet for a moment.

"I don't want to talk about it anymore."

*********
And then we moved on to chat about the big show we were about to see later on last night: White Christmas at the Academy of Music with PJ's folks. Which, by the way, was a hit with Bax. 2 and a half hours of live theater and Bax was in heaven. The best part? When the little girl (like 7 or 8 years old) sang and danced solo towards the end of the show.

Wide-eyed baxter: "HOW did she DO that?"

"Lots of practice and singing and dancing lessons."

"I want to do THAT!"

Anything you want, bax.

11.01.2009

Big changes, same battles...

May 29, 2009. Danna and PJ tied the knot...

Life has been quite amazing. PJ and I were married in May, surrounded by family and friends, including Mike's family. We honeymooned in New Hampshire in a beautiful tiny cottage on Newfound Lake.


In July we made the decision to try to grow our family and have a baby. So... in September, I learned I was pregnant (due May 19th, placing me at almost 12 weeks). We are thrilled! Baxter is over the moon about it. PJ and I just feel so lucky to have had such luck so fast.

Unfortunately, what has accompanied the pregnancy are many unbridled emotions that I feel ill-equipped to handle, hence my writing here. Unlike my relatively uneventful pregnancy with Bax, this pregnancy has me feeling seriously ill (nauseous) all the time, fatigued, vomiting, and generally miserable. Those factors have rendered me a bit raw - never mind the sheer volatility of hormonal emotions...

The most recent realization is how far I had been keeping PJ from me. For several weeks , I had been emotionally disconnected from him, except for the moments when I criticized him for one random thing after another. When he hugged me, instead of extending my arms around him, I folded them in front of me, hoping to be enveloped, but not left feeling exposed or vulnerable.

After weeks of this, I finally brought the subject up with David (the beloved therapist who I continue to see every 2 weeks to work through lingering issues of trauma and grief). I explained how I am with PJ, and, tears streaming, said, "you and I both know why I'm closing myself off from him."

To which David replied, "I think I know why, but why don't you tell me..."

I couldn't open my mouth. I couldn't just say it.

Like a minute of silenced passed between us with me shaking my head.

Finally he said, "You're scared."

I nodded.

"Can you say that?"

I shook my head. I couldn't say it. If I said it, maybe it would make it real. Maybe it would make something happen to PJ.

After several minutes of heaving sobs, I sputtered out , "I'm afraid He's going to disappear and I'm going to have to do this all by myself. and I don't want to need him. I don't want to be left alone again."

The fucked up thing about this is that thinking PJ is going to die is technically an "irrational" thought. But, based on my experience, the only thing my mind and body know is that getting married and having a baby is followed by acute terminal illness and the death of my spouse.

So, how "irrational" is it really?

If the brain is constantly storing constructs, emotions, events, senses, cognitions and physiological responses in long term memory, and stores them together when they are experienced together, then doesn't it make sense that the thought of early motherhood is hardwired in the same mental model as trauma, death, anxiety, and grief? Absolutely.

The answer? What the answer always is: Time.

Time and communication, honesty, open reflection, and sharing with PJ, which I'm trying to get better at these days. The more I tell Peej, the better it gets, so we're on the right path.

My subconscious is certainly not helping me in this regard though. The vivid dreams that accompany pregnancy should be about puppies and rainbows. I, on the other hand, dreamt last night that Mike returned from the dead, was not quite fully functional, but thought he was. He came back to live in "our house" and raise "our son," unaware that I had remarried, that Baxter knew only PJ as his daddy, and that I was expecting a baby. In the dream, I had to figure out how to integrate Mike into our home and into our lives. I was refitting the basement, finishing it, adding a full bath, getting a separate entrance for Mike. I was trying to figure out if he could get a job at DiscMakers. The feelings I had for him were purely maternal - the dynamic of a care-giver and patient. And my joy at seeing his smiling face was coupled with a dread and a sense of being trapped. After "figuring out" that PJ and I would take care of him here in our house, I said to Mike, "You know what I think we should do?"

And he said, going in to hug me, "Smoosh all day long?"

I couldn't breathe. How do you tell your dead husband that you're not his anymore? It was like that awful scene in castaway where Tom Hanks returns to his house only to find that his wife has moved on to be with someone else.

In the dream, Mike tried to snuggle with Baxter, but Baxter recoiled, grabbing PJ's legs and looking so scared. In his mind, Mike's return meant PJ's departure, and the hurt in Mike's eyes at his son's response ripped me apart.

I have cried on and off all day at this dream. PJ consoled me for about a half hour this morning as I went into all the reasons this dream was fucked up. "I'm not doing anything wrong, right?" i sobbed into PJ's chest.

"No, babe.," he said, trying to hold me close, "Your subconscious is playing some nasty tricks on you. Its asking you to reconcile the irreconcilable."

And finally, "I didn't know him, but I know that someone as practical as Mike would think that you have done exactly what you should have done."

He's right. In 2000, Mike and I watched one of his favorite movies, Truly Madly, Deeply. I loved the film, but hated how it ended.

At the beginning of the movie, Alan Rickman (Jamie) dies, leaving his girlfriend Nina alone, paralyzed with grief, unable to function. Jamie returns as a ghost, to be with Nina - perhaps to help her cope - but slowly becomes a nuisance, with his ghost friends intruding in her home and his constant self-centered actions frustrating Nina more and more over time.

In the end (immediately following the scene below), Jamie leaves Nina, hence setting her free and allowing her to move forward with her own life - and we get a glimpse of a budding relationship forming between Nina and a new man.

Mike tried to explain to me that it had to end the way it did; that we should be glad for Nina; that Jamie was setting her free. But I didn't like it. Because I didn't get it.

And now, I get it. Because I am Nina.



The poem that Nina translates word for word in this clip is by Pabl0 Neruda - the same poet who authored a poem (Your Laughter) read and my wedding to Mike in 2003.

Pablo Neruda (the dead woman)

"No, forgive me.
If you no longer live,
if you, beloved, my love,
if you have died,
all the leaves will fall in my breast,
it will rain on my soul night and day,
the snow will burn my heart,
I shall walk with frost and fire and death and snow,
my feet will want to walk to where you are sleeping, but
I shall stay alive,
because above all things
you wanted me indomitable,
and, my love, because you know that I am not only a man
but all mankind."

6.09.2009

Our cat, Maggie, needs a loving home...


Click here!
Wonderful 7 year old Female Tabby Needs Home

Our wonderful and loving 7 year old female tabby needs a home. Our son has developed asthma and a severe cat allergy. So, sadly, the kitty must go. Our kitty, ...



I have asked everyone we know if they could take Maggie, and thus far, she's still at our house. As much as I do NOT want to do a public campaign to the masses, we must get Maggie a new home Asap. Baxter wakes up sneezing and wheezing. We don't let him snuggle on the couches. And in the meantime, Maggie gets no lovin' at all..

My hope is that friends and acquaintances will see this and help us spread the word. x0

6.04.2009

Mike Young playing ComedySportz Circa 2002 or so.

Mike Young playing ComedySportz Circa 2002 or so.

My favorite moment on stage with Mike: Him using my "kidneystone" as an oar.

5.29.2009

Wedding Day!

PJ and I are getting married this afternoon at 5:30 pm.

Bax is giving me away and is the ring bearer. He's so excited that mom and dad are getting married.

PJ's giant family, my family, and our friends are here in town. Lonia (Mike's mom) has been staying here at the house since Sunday and is a wonderful help as things have gotten nutty over the past few days! I feel so supported by Mike's family. His mom, sister, and brother in law are going to be in attendance today.

Here's to new beginnings, to the amazing partner and best friend I've found and to the exceptional dad that Baxter is so blessed to have in PJ.

5.11.2009

May 11.

At left: Picture from Mike's friend Michele Kellemen from Penn circa 1986 or so... She just came upon it and sent it my way. He looks so young without his beard!

This morning:

Out of nowhere. Driving down 295 on my way to UDel like every Mon, Wed, and Friday. And there it is. A big Pile of Terd. I'm crying. Images of Mike juxtaposed like a sloppy mess in my mind. Us in love in Hawaii on a hike in 2000. Him firmly and confidently critiquing comedysportz rehearsal. Us driving around Tahoe on the honeymoon on June 2003.

Then him in a hospital gown in a chair, eyes drooping, feigning a polite smile. Speaking only when spoken to.


I had a dream last night that echoes the dream I have various iterations of every few months. He's in the hospital. He's not quite right. But he's right "enough" for them to continue with therapy and to keep him in rehab. Sort of the way he was right before the July 7th "Hail Mary" surgery from which he temporarily returned and then quickly vanished in swelling, cardiac arrest, and organ failure.

In my dream he was loving and smiling... faintly. He was quiet and childlike. He would respond to things sarcastically when the context was appropriate. But I felt a sense of dread and sadness. Knowing this was not the life he deserved to live.

Knowing that if he could see his "new self" through the eyes of his "old self," he would wish for death above this.


After about 25 minutes of crying in the car this morning, I turn off the music, and decide to reorient myself to the present moment with a little NPR. I tune in to whyy at the beginning of a story from the health/science desk about the lack of palliative care options for people who are dying.

http://whyy.org/cms/news/health-science/2009/05/11/a-bereaved-moms-story/8327

The concern here (one that I think about and talk about often) is that the medical system is so "cure-oriented" that it tends to prioritize length of physical life over quality of life. I often reminded Dr. Andrews or our main goal: for Mike to have a life of dignity and autonomy. Or none at all. It was this set of goals that set the stage for the high-risk final surgery on July 7th. High risk with slim possibility of high reward. And even as late as July 13-14, I kept reminding Andrews that Mike "alive" was not the goal. He totally understood and explained to me that because Mike was so young and otherwise in wonderful health, if we could "weather" the storm caused by the swelling in the brain from the tumor and the final surgery, we might be able to have Mike back.

"It's not time to hang up the kleats, Danna. I promise you. I'll tell you when it's time. But it's not time yet."

And he did tell me when that day came... 3 days later when Mike's brain was in the constant state of seizure, inevitably rendering him brain dead.

I feel grateful that Mike's hell ended. I sometimes wish it had ended sooner. I often wonder if his reluctance to move forward with radiation therapy in the winter ... and his desperate need to go to Charleston, SC in March instead of rushing into radiation treatment then - was his attempt to reclaim control of his life. To knowingly reduce the likelihood of his living a longer - yet less dignified- life. I don't know if he made these choices deliberately and willingly, but I like to think so. I am grateful that I am not in the place where I have to visit my husband at an adult daycare facility. I am grateful that Baxter does not have to grow up in a world steeped in gravity and the profound pain that would accompany such a situation. I am grateful that Dr. Andrews did listen to me. I do wish that we would have gotten off of the fucking gerbil wheel earlier. I wish that we had taken him back home in May or June. I wish he had died in his own house. I wish he had seen baxter again.

But, I am grateful that his hell ended and yet his legacy continues.

Where we were three years ago. May 11, 2006.
Mike’s having a good day. Not a great day, but a good one. I was there from about 1 until 4 pm. I washed his hair and face and gave him a nice shave. He ate half of his lunch. His sodium is still too low: 130. They’re working on getting that closer to 140. The low sodium might be responsible for his extreme fatigue. In spite of it, he was sweet and smooshy and pretty content. Always knows who I am. We listened to Rufus Wainwright and he tapped his fingers to the music.

I told him it was Nurse Appreciation Week while nurse Nicole was there in the room. He looked up at her face and said with a nod, "Well Ok then. I appreciate you." We laughed.

I think today I figured out some of Mike’s vision issues. It seems that not only does he have no peripheral vision, but he also has no vision down low either. Anything below the plane of his nose disappears. Put it this way - I put my face right in front of his, just 2 feet away and told him to tell me when he could see my fingers wiggling. I then brought my hand (with fingers wiggling) up from my lap in front of my face. He couldn’t see them until they were in front of my own eyes – basically right in front of him.

I think this black hole that exists down in his lap contributes to his confusion with what’s going around him. He often tries to place things down around his knees when he’s sitting in a chair, as though he things there are compartments or drawers or something down there. He also refers to objects that he thinks are there that are not (books, cats, etc), often reaching down low for random things. I talked to him today about how it might be helpful to “look” with his head and neck instead of just his eyes. He started doing it and it seemed to help a bit.

I also told his nurse Nicole about my observation regarding Mike’s visual fields. It proved useful for her when giving him pills to take. Usually she’d go to put a pill in his hand (down in his lap) and say, “Here Mike. Here’s a pill for you to take.” And he would reach randomly out move his arm all over, unable to find her hand. Instead, today, she said, “Mike, put out your hand. Lift it up.” And she put the pill into his hand when it was right in front of his face. It was much better. No guessing, no reaching, no random movements like before. As much as Mike has to learn new ways to do things, we need to learn how to best help him accomplish these tasks.

4.28.2009

Oh... the humor. the sick sick humor

On Friday, PJ and I had a guilty moment of awkward laughter at the sight of this envelope that came in the mail.

From Newsweek: FINAL NOTICE. Addressed to Mike Young. Something tells me he's not renewing his subscription. Call me crazy... but it's just this hunch I have.

Then today... I got THIS one (below). This one made me at once laugh and then furrow my brow in a "HUH?" kind of moment.

"Mike Young: for your recent purchase, Please enjoy this offer on your next visit. $10 off at Pep Boys."

So, several logical questions have arisen.

a) Mike Young made a "recent purchase" at Pep Boys?
b) Assuming, for a moment, that Mike did pass through town... Why didn't he stop in to say hi?
c) What the f*ck could he possibly be purchasing at Pep Boys? I sold Harvey (his 96 Saturn) in August 2006...

4.17.2009

A bird's eye view

Here is a wordle (www.wordle.net) i created of all the content of the blog. it bases the size of the words in the graphic on their frequency in the text.

It's funny - i think that as time goes on, the size of "PJ" will get bigger as the size of "Mike" will get smaller. And that's ok.

Things have been quite wonderful lately. Such a feeling of "normal life" going on around us. We're about 6 weeks away from PJ and my wedding, so naturally there are emotional moments here and there. I still worry that my marrying PJ is the equivalent of asking the cosmos to come sabotage me once again - but I'm working on that. But the details are worked out. We're having a church wedding - at an Episcopal Church, followed by a decent sized reception at a country club. PJ's family is sooo giant that we have ended up with a pretty big list of attendees. I have been spending my free time working on lil' crafts, trinkets, the wedding program, and other fun details. I LOVE this stuff.

And to make the day quite distict from my wedding to Mike, there are a lot of intentional differences.

a) mike and I had a small outdoor wedding, officiated by a Unitarian Minister. PJ and I are having a big church wedding, officiated by a female Episcopalian priest.
b) mike and I had a casual cocktail reception outside under a big tent. PJ and I are having a formal sit-down dinner inside a country club.
c) mike and I each had one attendant. Liz was my maid of honor and Kevin was his best man. PJ and I each have SEVEN attendants. ???? nuts, right!
d) When I married Mike, my dad walked me down the aisle. When I marry PJ, Baxter will walk me down the aisle. And I (and everyone else in the place) will surely fall to pieces.

I love planning this wedding. And even more - i love the idea of marrying PJ. He is an exceptional partner - and he's getting better all the time. He is also an amazing dad. Baxter is a lucky lucky boy.

I still have major fears that I will face for a long time. I fear PJ falling ill. I fear Baxter being abandoned again - either from my death or PJ's. I have physical and emotional reactions to some things that I cannot control. Certain sounds, smells, sights... throw me back. But it happens less and less frequently now.

I just found a lump on my thyroid that I need to have an ultrasound on... and that threw me back for a bit. Thyroid issues are prevalent in the women in my family - and the statistics surrounding thyroid issues suggest no real need for concern. However, when your husband is diagnosed with a brain tumor that has a 95% survival rate of five years or more... and then in 8 months he's dead... it messes with your ability to interpret risk and statistics properly.

So, I continue to struggle, but I try to be mindful. When I panic or react emotionally, I try to "get Meta" - "Why am I freaking out? What is the real source of this emotional response?"

But all in all, life is going on and it's going well. I wish the same for you.