Thursday, December 18, 2014

"O Christmas Tree! O Tannenbaum!

Want to go to the cemetery to take a Christmas tree to Brandon’s grave? Me neither. I don’t like to see the tombstone with his name and the dates of his birth and his death. Don’t like it. Too real. And I don’t really feel him there. I tend to feel him anywhere and everywhere else.

Yet as much as I know he’s not there, I’m also compelled to ensure he has a live Christmas tree where his ashes now reside. One with lights that work. The tree is small because I can’t handle or stabilize a bigger tree, but it’s just the kind of fir tree we both like.

I decorated the tree at home. Lights, gold-beaded garland, ornaments, bells, bows and a small Santa wind chimes. Why not keep the tree in a special spot at home where it would stay out of the wind and away from any inclement weather? I wish I knew. In spite of knowing he’s not at the cemetery, a real Christmas tree is a must. Go figure.

Brandon's Christmas tree 2014
And it has to light at night. The white lights I wound around the tree came with a battery pack and a 6-hour timer, which I’ve set to light from 4:45-10:45 p.m. EDT. Yes, I know the cemetery gates close at 5 p.m. and no one will see the lights each night. But like the lights place on windowsills each Christmas season to represent and welcome the Light of the world into homes, I want the spot marking the burial place of Brandon’s to have light. I can’t bear the thought of there being no light for him at night while I also know due to the unusual “vision” I’d experienced immediately after his birth that he lives in the perfect light. And I also want his spot to have sound, although I couldn’t give you a reason why. Still, the bells and the Santa wind chime are there for a reason.

Brandon’s 3-year-old daughter Morgan and I took the Christmas tree to the cemetery Monday. I staked the tree stand into the ground and then Morgan helped me add tinsel. I taught her as I’d taught Brandon and my other children how to carefully apply only two to four strands at a time at the end of a branch. Morgan loved adding the tinsel and watching it blow in the wind.
Morgan after adding tinsel
Late this afternoon I revisited Brandon’s gravesite and the Christmas tree. I was afraid the tree may have made it through a severe storm, which had swept through our area two nights ago. I thought it likely it had been knocked down or blown away, but there it stood little worse for wear! I had to reinsert several stakes in the stand to hold it in place, and a number of ornaments needed to be picked off the ground and rehung and others needed rearranging. Surprisingly, much of the tinsel was intact! And the lights went on as scheduled at 4:45 p.m.

I tried a chorus of “O Christmas Tree” before I left before the gates closed, but I don’t think I’ll ever make it to the end of that song. Ditto for “Silent Night” or even “Santa Claus is Coming to Town.” Maybe I should simply settle for “Cry Me a River”?

Wednesday, November 26, 2014

Prayer and positive thought gratefully accepted

And so it begins. Holiday season 2014. All children and families will be in from far and near, and will arrive here for Thanksgiving dinner in a few hours. 

Brandon preparing Thanksgiving dinner
I can do Thanksgiving, although Thanksgiving was a favorite holiday of Brandon, who loved to cook. It is Friday I fear. Friday morning we are to have family photos taken - the first family photos without Brandon physically in the picture. And I am so very scared. I don't know how to do this. I don't know how to be brave. I miss him. It won't be "right" without his physical presence. 

Sure, we have symbols to include in photos. Symbols aren't worth sh#t, but I think they sure beat no symbols at all.

Please send positive thoughts and prayers through cyberspace for me and our family this Friday morning (Eastern standard time). I want, I need these photos but I need your energy to get me through this. Our last family photo shoot - by Jenny of Fresh View Studio, the same photographer -  took place merely three weeks before Brandon's passing. I can't begin to tell you how many tears have been shed just thinking about this session without him. I want this. I need these family photos. But I'm so scared. 

A blessed Thanksgiving to you all. Hug each other and let each know how thankful you are to have each in your life. 

Saturday, November 15, 2014

I Just Want My Baby Back

It has been an incredibly busy summer and fall. Mostly in a good way. "Busyness" is often a synonym for "denial." Is numb the same as denial? I often find myself feeling numb. I thought numbness was an early manifestation of grief, but maybe this is early. I think “early” will last the rest of my life.

Sometimes I feel angry, but this anger is not directed toward anyone or anything in particular. There is no blame to be attributed. Still, I’ll find myself spewing snippy, snappy, cynical quips. When I hear it, I don’t like myself, yet I allow this behavior to continue. I see a harsher me in the mirror and I don’t know how to soften the look.

Mostly, I’ve noticed a feeling of numbness that hadn’t been there earlier. And I spend a lot of time in the land of Denial, which to most probably looks like me living my real life, but it’s not – at least, not precisely. It’s me, sort of being real and sort of pretending.

The land of Denial, the numbness and the anger help me compartmentalize. Attending events, enjoying family and friends, participating in professional activities slip into compartments, which is different than detachment.  It’s not that grief doesn’t seep into all compartments, it's that grief simply isn’t as deep or raw when I’m in one of the compartments I need for ongoing function. Trips to Denial, feeling numb and the anger are distractions from the real.

The real doesn’t slowly sneak in. The real is the sudden shock of a sucker punch to the gut.

The real is that I just want, but can never have, my second baby back. The real is that my family can never physically be intact again – the joking, poking, bantering of an integral member will always be missing. The real is that I miss Brandon the adult son so very much. The real is that an amazing little granddaughter is left without her daddy and a daughter-in-law who is beautiful inside and out is left without the husband she loved and had too little time with.

The real is a sadness so profound I cannot begin to adequately describe it.

I know life is short. I know God’s time is different than human time. I know our family will be together again on the other side of life on this planet. When I’m in the “right” compartment, I can appreciate all those things.

When I’m in the real, I just want my second baby back. I just want my baby…

Saturday, October 18, 2014

Dying As Healing?

It has been almost four months since I last posted. The gap is not due to having nothing to say. It may be due to too much to say and an inability to find the words to say it. I could blame it on a busy summer, since it has been a busy summer. It may be that I’ve entered some different phase or way of grieving. Quite possibly it’s a combination of all of those things. (More on all of this soon – I hope!)

I’ve started a number of posts in the last few months without finishing any. Then, a couple of weeks ago, I received an email newsletter from the nurse organization AWHONN (Association of Women’s Health, Obstetrics and Neonatal Nursing), which included a link to an article entitled A TransformationalJourney Through Birth and Death by Maureen Cavanaugh, DBioethics, MS, MAHCM, RN. The article is about a childbearing woman whose beliefs regarding birth and death challenge the nurse author’s (and her staff’s) concepts of care. Both the story of this particular woman’s journey and the struggles of hospital staff to let go of some nursing care beliefs and adapt care to meet the needs of this expectant, and then new, mother is what makes this article so remarkable.

It was a shock to read that the article’s subject, the expectant/new mother, was dying and had little time left to live. Still, this “high risk” mother was excited about her soon-to-be-born baby and believed in no or as little as possible intervention for her baby’s birth. The dying mother’s desires and the nurses’ usual practices initially seemed poles apart. During the subject’s prenatal and postpartum stay, a number of the nurses began to question “usual” practices and adapted care as much as possible to meet the mother’s desires for this birth and the time she might have with her baby. Never have I felt more proud to be a registered nurse myself as when I read of these nurses as they overcame beliefs based on routine versus research evidence and then worked to individualize nursing care and ensure the best possible experience for this mother.

As I came to the end of the AJN article, I looked at the references. A couple came with links to the referenced articles, which I took so I could learn more. One reference discusses the baby’s mother and her philosophy of birth and death, and I was struck by something journalist Jennifer Gish wrote. “Doctors looked…and saw the 42-year-old was dying. Renee… told them she was healing. Dying, she'd say, might just end up being part of that process.”

Dying as part of the healing process. Wrap your head around that. I know I’m trying to do so.

Monday, June 16, 2014

June as a dichotomy

The date of Brandon's disincarnation has come and gone for a second year. The date is one thing but I am more moved by the day of the week. This year the date was a Monday, but the day of the week forever remains Saturday. Then there are the days in between disincarnation and the funeral Mass celebrating Brandon's life followed by his cremation. (And who came up with the tacky term "cremains"?)

I expected a less-than-pleasant first week of June, but the intensity of feeling was unexpected. In many ways it hit harder this year than last. The sadness of missing someone so essential, so much a part of who I am is indescribable. (Being an intrinsic aspect of one's "becoming" changes a woman forever, and the child becomes part of the mother in a literal and figurative way.) The sadness of missing him came in waves of what felt like punches to the gut. It came with heart palpitations and a heaviness in my chest. The word "heartache" is so very apt.

Once past the days of the week and the dates on a calendar, I returned to my cute little vacation home in the land of Denial for a needed hiatus. Not sure how long I'll stay, but at least I can begin to appreciate the beauties that are June. 

That Brandon's disincarnation occurred in June creates a dichotomy. June has always been my favorite month with its magic, but now it is also my worst. How can such profound sadness possibly co-exist with the flowers, fragrances and fireflies of the month? (And some years June has also been the month when I've been privileged to watch the fairies dance.) However, I feel both the sadness and the joy that is June. 

Somehow I can't quite believe this is coincidence.

Friday, May 30, 2014

Reflections on "Done"

Tonight marks 52 x 2 = 104 weeks since Brandon whispered, "Done." I asked if he understood what the oncology resident was telling him and offered a quick explanation of what she had said. Brandon's eyes locked with mine and he again whispered, but more decisively this time, "Done." 

The sound of his "done" haunts me. I hear each "done" over and over and over -- the first resonating with the struggle to get one word out when it was taking everything he had to simply inhale and exhale; the second resonating with the strength of his decision. For a long time I interpreted that second "done" as meaning he knew his body could take no more. His cancer had gone too far. He knew, and his second "done" meant he accepted. 

In the first year after Brandon's death, the sound of that second "done" so rang in my ear that I didn't realize I was missing a crucial element. It suddenly struck me at some point in this second year that his expressive eyes, the window of his soul, were trying to tell me his second "done" meant much more. Yes, I think he knew and accepted, but I believe his eyes were telling me he had accomplished what he was supposed to accomplish during his too short life. He had "done" what he'd come to do.

Oh, something my soul recognized during our eye contact and the second "done" -- a "reverse birthing" process had begun. And the labor contractions triggered by his whispered "done" were thousands of times more painful than those preceding his physical birth. 

Thursday, May 29, 2014

No, I’m Not Angry With God or Cancer

Once in awhile someone tells me I must be angry. Angry with God. Angry with the universe. Angry with whatever caused Brandon’s cancer. Sometimes someone says surely I ask, "Why?" 

I’m not and haven’t been angry – not with God, the universe or whatever caused some of Brandon’s cells to go whacko. And I don’t ask, “Why?” Why my baby, our Brandon? Why our family? Why now instead of many years from now? Why not someone who isn’t a good person – why not someone who hurts others? Why not me instead of him? But my work is in health care. I know “shit happens” and shit is nondiscriminatory. So perhaps the question should be, “Why not?”

A few weeks ago I finished the book The Fault in Our Stars (TFIOS) by John Green.  I hesitated reading it, as I knew it was about young adults with cancer. I wasn’t sure if I could handle it, especially when others told me how they’d sobbed through several chapters. Still, like a moth to flame, I was drawn to it. Since the movie is soon to debut, I figured it was safer for this moth(er) to check out the book in the privacy of her home rather than the film version in a public movie theater.

Although I confess to a few moments of teariness, I did not cry as I’ve come to know “cry.” No tears rolled down my cheeks. I did not sob. I did not hear the guttural sounds I’d never known I was capable of uttering until moments after Brandon’s soul and body separated, but which I’ve heard many times since. I’ve cried my river in the last 1 year + 51.9 weeks. At times I feel as if I’m crying a new river. I guess much of TFIOS seemed to be no more than “been there, done that.”

Still, I found myself highlighting several passages. Those passages spoke to me. I include a few here.

“What am I at war with? My cancer. And what is my cancer? My cancer is me. The tumors are made of me. They’re made of me as surely as my brain and my heart are made of me. It is a civil war… with a predetermined winner.“                                                            Augustus Waters                                                            

Brandon didn’t lose “his” battle with cancer, because if he battled his cancer, he’d have been battling himself. Some tiny thing that was part him forgot to act properly and it became a big thing. He did his best to put a stop to it, but puny humans cannot always put a halt to this part of themselves even with today’s treatments.

And that brings me to another statement of TFIOS “hero” Augustus Waters:  
“Even cancer isn’t a bad guy really: Cancer just wants to be alive.”

Augustus may have referred to dealing with cancer as a civil war, but when the cancer, the part of the body that’s gone haywire, overwhelms its own body, the cancer dies too. In wanting to be alive, cancer sets up its own demise. I feel sure Brandon would have been willing to “share.” Hell, he’d have been willing to serve as the poster boy for cancer if it meant he (and his cancer part) could have stayed here in this world with his wife, daughter, family and friends for a long time.

“The pleasure of remembering was taken from me, because there was no longer anyone to remember with. It felt like losing your co-rememberer meant losing the memory itself, as if the things we’d done were less real and important than they had been hours before.”    
                                                              Hazel Grace Lancaster   

Relationships come in all shapes and sizes: couples, parent and child, siblings, friends. For every relationship one is part of, there are shared moments that are special. Such moments are brought up, discussed, laughed at, enjoyed and savored over and over as time passes. TFIOS narrator Hazel nails the feeling when one’s co-remember is no longer present and will not be present to co-remember ever again.
Creation of a co-remembrance

This weekend marks 2 years – 104 weeks since Brandon and his cancer died.
It seemed like forever ago, like we’d had this brief but infinite forever. Some infinities are bigger than other infinities.”                                                                                     Hazel Grace