Sunday, May 31, 2009

To Come Home To Yourself

by John O'Donohue

May all that is unforgiven in you
Be released.

. . . .

Graced with love.

Saturday, May 30, 2009

Just so Tired Sometimes . . .

I'm just so tired of trying sometimes.

That's not to say that I won't, only that I get so exhausted from trying to give a shit about the little things. And by little things, I meant paychecks, and house payments, and nice things to say to friends and family, I am just so tired. That's not to say I don't love, it's just that I'm tired and I'm pretty sure I'm going to fail at a good lot of what I'm supposed to do in the very near future.

'Cause I'm sucking at regular life right now, you know, the life where you're living a dream life with living children and not at dead child. This sucks. I AM SO GDamn TIRED.

This is one of those nights where I feel I have nothing left. But then the AM will come without my calling and I will rise again, and do the mundane as I always do. But I hate it more and more each day. But will do it none the less.

Times when . . .

I just don't want to try any longer. I don't want to figure it out, make sense, or make meaning. I'm just done.


Wednesday, May 27, 2009

To Those Who See Thestrals in Real Life

I'm veering onto a path of popular culture to share one of the ways I try to explain to others this phenomenon of recognizing death. The lens I use since Caitlin's death, and what I see when I look at the world through my eyes--the eyes of a bereaved parent. It's a little like Harry and Luna in "The Order of the Phoenix," one of the Harry Potter movies.

There's a scene where Harry is on his way to Hogwarts with his friends and he turns around and looks behind him.

HIs friends remain fixated at what lies ahead, but Harry turns around and sees what was and what is. Thestrals. Ugly creatures and yet gentle, because they know what they are. Visible reminders that death is real.

He asks, "Don't you see them? What's pulling the carriage." And his friend answers, "Nothing's pulling the carriage, Harry. It's pulling itself just like it always does." Ah, the luxury of ignorance.

He meets Luna, who assures him that he sees what he sees. She's quite calm about it as she can see them too. We find out later in the film that Harry and Luna see the Thestrals because they have witnessed death. And that's a bit what it's like seeing through bereaved eyes--We recognize each other. We know the look of seeing death. Other's will look past it, but we will see it in the eyes of our fellow bereaved. We will hear it in the careful words they choose to use in answering "How many children do you have?"

Other's who without this death experience believe that life gets pulled by itself "just like it always does," and those who have seen death know that sometimes what pulls us through life is the knowing that it (death) does and can happen. We need the Thestrals to pull the carriage, because left to ourselves we would melt in despair on the forest floor.

To those who see Thestrals, I echo what Luna says, "It's OK, you're not crazy. I see them too."

Tuesday, May 26, 2009

Caitlin's Tree is In

I went to the nursery and chose a tree, and wrote about it here and here. Well, on Memorial Day, our landscaper came out and prepared the bed and planted her tree. We should see blossoms in July and then in the fall we'll see the leaves turn. I love that we can see the tree from our front window of our home. And I love that it lives.

The tree was a gift from a group of DH's colleagues and so I took this picture of the butterfly sympathy card they sent us.

Monday, May 25, 2009

On Passing a Graveyard

On this Memorial Day, I am remembering and honoring those who died in service. 

On Passing a Graveyard (by John O'Donohue)

May perpetual light shine upon
The faces of all who rest here.

May the lives they lived
Unfold further in spirit.

. . . .

May we reverence the village of presence
In the stillness of this silent field.

Sunday, May 24, 2009

Remembering Her First Kick

I took this leave of absence from e-life to check in with real life. Part of the checking in was work-related. I attended a conference, a conference I attended with DH two years ago when I was pregnant with Caitlin. A conference which was also the time and the place where I first felt her kick. She didn't have a name then, but she made her presence known. It was bittersweet for me, because we had recently received the diagnosis that our child had DS (Down Syndrome).

I was a mother who had hoped for a "healthy child" and not a child with DS. Do you know the shame in that? My strength and my weakness is that I work to be honest with my feelings and look squarely at my thinking. I recognize that other parents had different reactions, and I won't invalidate those feelings, but I also will not invalidate my own feelings. I am not a bad person because I was overcome with fear--turns out I'm normal. What probably was less normal, was that I acknowledged how I was feeling. And I was incapable of hiding it. So, when others judged me, they did so with some evidence. It's a painful road.

When Caitlin was born, I was overwhelmed by loving. Not love as a noun, but love as a verb, the powerful act of loving. That un-named force that bursts out of you. I was still very frightened of DS, but this loving force made me believe that I could by sheer will fix anything, and protect against anything. Me and DH became focused on helping her be happy and keeping her healthy. But, that was not to be. She died.

The physical and emotional memory of Caitlin's first kick is another step forward in this grief journey. A step forward by pausing to ruminate over the past. I sat on benches and stared a trees and birds. I surrendered to the desire to return to the past, when she was alive and there was still hope. Hope for redemption for fearing her DS. Hope for watching her grow and celebrating her successes. And simply celebrating her. Hope for an active role as a mother. Hope for--as DH said so many times "to bring her home and find out who she is."

I opened my mind and my heart to revisiting the past, and making peace with my feelings. I was supposed to be reflecting on ways to improve my profession, but I was in this place where she kicked, and I felt




One would probably prefer a romantic view, but every parent desires a healthy baby, and so joy and sadness were siblings in that first kick. One might imagine that any baby is enough, and I'm here to tell you that that is mostly true. It's also true that there is immense and seemingly insurmountable sadness that a parent feels as the dream of raising a child gives way to fear. Most parents experience grief with the birth of a child with special needs; grief for the life they hoped for their child to have, in effect, grief for the child they thought they were having. It's normal, but their family and friends are the last to hear of this expression of grief. Why? Because it's not acceptable. A parents' normal, expected grief, is misinterpreted as a lack of the ability to love. It's not true.

So, the parents suffer in silence with questions. Normal questions and reasonable fears. Will my child be able to take care of herself in adulthood? Will others treat her well? With love? With disdain? Will I be enough for my child? When you have a healthy child you will likely have the luxury of saying "goodbye" in death knowing you did the best you could. And you trust, that they will take with them what you took from your parents. You were OK, and so shall they be OK. When you have a child who is mentally retarded, you fear the unknown. You can trust in God, but there is plenty of evidence that others will mistreat or not know how to love your child. I can't go on. It's too painful. (If you are feeling the need to bible-verse me here, please refrain. It will hurt more than heal. Thank you.)

I breathed differently for several months, since the sensation of her first kick. With each inhale, I felt hope for the life I carried, and with each exhale, I felt hopelessness for the care for her life that I could not control. I regret those prenatal tests--the tests everyone spouts are so important. Tests that help parents make decisions for their children's future. I had no idea what few decisions I would have the privilege to make. She died.

The work conference was a time warp for me. I don't remember the words of wisdom shared by my peers in their presentations of research, because I was in this place where Caitlin was alive and not knowing how it would turn out. And I was wishing, desperately wising that I still didn't know how it would all turn out.

I miss you baby girl. I miss loving you in life. I am forever your mother, and I miss you. I'm sorry my old eggs gave you DS. If I could change it, I would, but I am powerless. And that is the worst truth ever, to know that as a parent, I could not fix it. I am powerless.

Thursday, May 21, 2009

Back from RealLife

Welcome ICLWeS! I'm back and happy to report some success in my endeavors to pay attention to real life! During my hiatus from e-life, I did have to go off and do a bit of work. But on my drive home, I took a few detours---into Wine country.
In celebration of engaging and enjoying real life, I visited three wineries. I tasted a few (make that several) wines and bought a couple of bottles. Who knew that Virginia is 5th in the nation for wine production? Well, now I know, thanks to a lovely lady who poured a Chambourcin for my tasting at Cave Ridge Vineyard.

I think I enjoyed veering off my path the most. There is something quite liberating in letting the schedule be and just go. I drove into the Virginia country side. I waved back at the people who waved to me as I passed by, as though they knew me. I drove slowly and stopped to take pictures and talk to strangers about grapes, vines, and whether chocolate or cheese would go best with a wine made from Norton grapes! And all the while, I'm intimately aware that this is evidence that I am a survivor, and that it's possible to engage, and yes, even enjoy, life after the death of my precious daughter. And, that it's OK to live again---it's OK.

Wednesday, May 13, 2009

Real Life, Not E-life

Today, I sat at the kitchen table with DH and was distracted, by a bright red cardinal perched on a branch protruding from one of the many pine trees that surround our neighborhood. The pine trees are full of green patches of moss and so the red seemed more stark than perhaps it was. We watched the bird for moments. Only moments and it was such a fulfilling spectacle, though short. We talked about the world around us coming life as spring prepares a way for summer. This preparation that the frogs sing out for us every evening. They croak an almost deafening sound when we are still enough to listen.

And so I'm thinking, I need a little more real-life and a little less e-life. So, like so many bloggers, I find it necessary to write about taking a break from the net, the forums, the blogs, email, and go offline into real life for a few days. (Besides, it's DH's B-day today and I have a few things to do!)

I mean the net has lots to offer, but a red cardinal in the mossy green woods---Can't beat that. And yes, that's one of our frogs (or is it a toad?) hangin' out with us on the deck. I think he thought the pine needle on his back was a nice disguise. Heh heh.

I've left the comments open so if you visit when I'm not "in," you can let me know you stopped by, talk amongst yourselves, or leave a message for the frog! S/he needs a name!


Sunday, May 10, 2009

Making a List of Mother's Day

Here's the thing about lists, they give us a sense of control. When I make a list, I feel like, "Hey, this is doable" and "Now, it makes sense." Well, as many can imagine Mother's Day for me feels out of control. How can I make it doable? How can I make it make sense? I've made a list.

1.) We sent my mother flowers and she got them from me, DH, and Angel Caitlin
2.) I cried in church today because:
  • The readings talked about asking God for what you desire and if you keep His commandment (belief in Jesus), then you shall receive--well we all know that doesn't apply to bringing a dead baby back to life after over a year
  • We sang an anthem to Mary. One my mother sang to me, and now I imagine Caitlin might be singing
  • A walking toddler in pink walks up the aisle and stops to stare and babble at me before she toddles off 
3.) I got hugged by a couple of women today, because they knew how hard it was for me. "Not my favorite day," I say. And their reply was not that platitude "in the plan" stuff, but a sincere hug and a "I'm thinking about you." 

4.) My DH greeted me this morning with "Happy Mother's Day" and then we hugged for a long time. 

5.) DH and I commence our routine of watching "Sunday Morning" on CBS. We skipped the tribute to and story of moms--I'd had enough. 

6.) I listened to my messages on my cell phone--My mother will send me a Mother's Day Card---that made me tear/smile up. 

7.) I didn't sleep last night. I listened to the frogs, took a picture of the moon, watched the White House Press Core speeches, and wondered is there anyway I would write this all away? Write grief all out of me, so I could be done with it. 

8.) No, it's forever. Fitting that this is list item number 8. 

Thursday, May 7, 2009

Mother's Day: A Call for Peace

It's the season of Mother's Day, again. A time when we typically hear on TV, Radio, and now internet adds, "get mom what she truly desires." "Yes," I and my fellow bereaved mother's scream everywhere, "Give me back my CHILD."

I discovered a year ago some of the origins of Mother's Day. Many note that the mother's day that Julia Ward Howe called for was one of peace---one where mother's took to public forums their protests of war so there would be no more dead children. Her mother's day proclamation called for women to "bewail and commemorate the dead" and "promote the interest of peace." You can read the entire proclamation here.

I found a bit of comfort in Howe's words and in recognizing that her vision of Mother's Day has become mine---a day when more children could be nurtured, than would be mourned.

So, I'm sending this "Honoring Mother's Day" e-message to the bereaved mothers whose children have died in war. With you I bewail and commemorate your children's deaths and hope, hope desperately for peace.

Tuesday, May 5, 2009

Dream Explained

I wrote about a dream where I saw myself sitting on a blue marble bench. Because it stuck with me in my waking hours, I wrote about it and that helped me release its hold to me. I have a personal conviction about dreams. I believe they have meaning. I believe that if I work at it, I can discover the reason why my mind needs to work on something in my unconsciousness, because I'm unable to work on it in consciousness. Sometimes that's because I don't have time or it's too difficult. Here's what I discovered about the blue marble bench.

1) It exists. In fact there are four of them outside the building that houses the preschool where I volunteer.

2) My volunteer work is teaching young children music, and I sing many of the songs I sang to Caitlin when she was alive.

3) I love teaching young children music. I teach them to use their voices, to learn to move creatively to music, to pay attention to life with their ears not their eyes, and to express themselves through creating their own songs and musical sounds. It's rewarding work, when teachers and parents tell me that their children love music, but more importantly when they tell me that they see that their children are musical (when they never were before). Of course they are! Music develops as a mode of expression long before speech, but I digress.

4) My heart was in deep sorrow every time I sang those songs and watched little precious faces light up -- faces that were not my child's face. And one of those cold blue benches was where my heart sat, while the rest of me nurtured other people's babies. I don't resent that nurturing, it's the kind of mother Caitlin has. I am, however, distressed that I nurture my child's memory and no longer nurture her in this physical realm.

And that I believe, is the meaning of the dream of the blue marble bench.

Saturday, May 2, 2009

More Comfort from Ann Hood

I wrote about attending a group meeting of bereaved parents shortly after Caitlin died. I attended too early after her death, but there was a special guest speaker, Ann Hood. I thought I would hear words of encouragement and see parents who survived and were thriving despite the death of their children. I left talking to myself, repeating the words "unacceptable" over and over. I found myself in a room of pain and received no "comfort" from Ann Hood.

Of course since then, I've grown a great deal and I understand that the grief group is likely the only place many parents can grieve openly, and that what I saw was not my future for everyday of my life. I'm still irritated that I get selling emails from Ann to sell her books, because it reminds of that most awful day. So, how did I receive more comfort from Ann this time?

A hug, "I'm sorry," and a look of sincere understanding.

I had not intended to attend a dedication ceremony at my place of employment, but when I happened upon the event as I was leaving the library, one of my students showed me the program. I glanced at the list of a series of speakers, and a name caught my eye--Ann Hood. I stayed, not to hear the dedication, but to hear Ann's speech. I wanted to hear that she could deliver an uplifting speech and I wanted to stop being angry with a stranger--one who has written beautiful books of which I have read one.

As I sat listening to the speeches of gratitude, and the listing of accomplishments, I stared down at my hands and felt that familiar horrible longing for being somewhere else. Somewhere where I was not a professional women, but a mom at home complaining about not being fulfilled. I see a little hand wrap her hand over mine. I feel my daughter's hand upon mine and I close my eyes. She leans her head against my shoulder and pushes it into my chest--that snuggling mothers cherish. And I rest there with my dream--or was it an angel visit--it felt real and I didn't seem to be actively imagining it--rather the images, the physical sensations came to me. I hear her tell me through love that "it's OK, I'm here." I exhale and open my eyes and wait for Ann's speech.

It was short and lovely--about books and libraries. There was sincerity in her words and she was smiling and I saw a bereaved mother who was surviving and finding a way to thrive. I had my computer and camera for later work and I snapped a pic, because it seemed to be a part of my grief journey. I thought about introducing myself to her, but was sure there wouldn't be an opportunity. While everyone was moving past the jazz combo, working their way toward the refreshments, I took the quickest way out. And it happened that Ann came down the podium steps at that time.

I walked up and introduced myself. "You don't know me, but I was at the parents' bereavement group meeting about a year ago, and I wanted to thank you for what you've been doing for bereaved parents." She smiled and let me hold her hand. "My daughter had only been dead 11 weeks so it wasn't a good thing for me at the time, but thank you." "Oh, I'm so sorry," she responds, and gives me a big hug. "Well, I know you aren't here for this, but I wanted to say 'thanks.'"

I was afraid she'd think I was a crazy person, but I shouldn't have worried. I think bereaved parents know that at any time you will feel grief and you will encounter others on a similar journey. And there is comfort in that.

An interesting side note: I had an appointment in a nearby city that evening and missed the exit I needed. In winding my way to my destination, I found myself in slow moving traffic on side city streets. At one point I come to a complete stop, and I look around--and see the congregational church where that bereavement group meeting was held.