Monday, March 30, 2009

"In Silence" by Thomas Wolfe

In Silence

Was it not well to leave all things as he had found them,
In silence, at the end?
Might it not be that in this great dream of time
In which we live and are the moving figures
There is no greater certitude than this:
That, having met, spoken,
Known each other for a moment,
As somewhere on this earth we were hurled onward
It is well to be content with this,
To leave each other as we met,
Letting each one go alone to his appointed destination,
Sure of this only, needing only this--
And silence only,
Nothing but silence,
At the end?

[Since Wolfe's poem poses a question, my answer is no. The silence is part of the music, the vibrations of life that we cannot hear living, but perhaps we will become when we pass. His phrase "hurled onward" described for me that feeling of being put on this grief journey--not my choice, I was hurled to this path with Caitlin's death. And the letting go, is excruciating and once again, there is no choice but to surrender to it.]


Sunday, March 29, 2009

Show & Tell

My first time joining Mel's Show & Tell. On a recent outing I discovered these coasters. I love the natural look of the butterflies and of course they make me think of Caitlin. It's a way of continuing to weave her into our lives.

Saturday, March 28, 2009

Joining Baby Loss Mamas "Under the Tree"

Carly's latest "Under the Tree" prompts have already brought about many baby loss mama's to share beautiful tributes, thoughts, and healing meaning making. And her questions this week, have brought me to join them.

Do you have a special place in your home for your baby/ies? What is it like? Do you have any rituals that you perform in memory of your baby/ies?

We have pictures of Caitlin in our living room, work, wallet, and everywhere anyone with living children would keep pictures. In our home, I purchased a stand alone white closet that holds all of Caitlin's clothing, her toys, books I read and sang to her, her hospital combs, lotions, pacifier, and cards of congratulations and later sympathy. This is where I add other items that come to be Caitlin's. It's meaning for me is that she belongs in fabric of our lives, and this is one way I parent her memory. The closet also includes DH's things and some of mine. So, we use it on a daily basis.

The other special place is Caitlin's grave site. Her stone with her name on it is important to me and I go and visit when I need to be where her body is. I do have a ritual of sorts. I bring my iPod and play the "Caitlin & Mom" playlist of songs I sang to her, songs of healing, songs sung/played at her funeral, and songs since her death that help me think of her. I usually squeeze the toy to make funny sounds, because that's something I used to do for her in the hospital and she loved those funny sounds and followed the toy with such intent.

The toy still works, and some day I know it won't because of the weather or because it will get lost or taken--it happens I know. But for over a year now, I visit and squeeze and Caitlin and I listen to giggles, whistles, and bird tweeting. It used to make me cry because I miss her so terrible, but it also makes me smile because I remember her life.

At some point in my visit, I visit each of the other graves of those in the baby section, just because I know how important it is to remember our children. Before I leave, I touch and kiss her name, and I talk to her. Sometimes out loud, because it helps me to hear me say her name and feel the vibrations of my voice going to where her spirit is.

[I don't have enough energy to answer all the "Under the Tree" questions, but I'm grateful for the prompts to further healing for all of us who gather under the tree.]

Thursday, March 26, 2009

"Magic" by Thomas Wolfe


And who shall say --
Whatever disenchantment follows--
That we ever forget magic,
Or that we can ever betray,
On this leaden earth,
The apple-tree, the singing,
And the gold?

I have no idea to what disenchantment Wolfe speaks of, but for me the horrors of Caitlin's death threatened to make me forget the joys of life and the magic of the ordinary. That she lived, that she gave me the gift of motherhood, that she looked into my eyes and saw her mother and heard her mother's songs, is for me the "gold."

Peace. May all find what is gold in their ordinary lives.

Wednesday, March 25, 2009

Nothing in Me Today

I've had "nothing" in me today. Just blah and struggling to get the work in. I'm way behind in my ICLW comments, so will have a quite a day to come . . . Sorry. I think of my friends out in Blogosphere and thank you from the bottom of my heart for your loving comments. Peace.

****** I did it ****** ICLW comments are out there. And, actually, I feel a little better having read and focused on others. That whole sending the love out there works. Just does!!!

Monday, March 23, 2009

"Finding Our Tongues" by Dean Falk

I've been reading "Finding our Tongues: Mothers, Infants & The Origins of Language" by Dean Falk. I've encountered the "putting the baby down" theory a few other times. In summary, our ancestors lost the ability to grasp and hang on to their mothers as mothers swung from trees and gathered food in the forest. Primates rarely vocalize to infants because the infant is usually attached. However, if the infant is dislodged or left then the infant cries and the mother returns to pick the infant up. Anthropologists' studies of hunter and gatherer societies (what few there are left), found mothers used slings to keep infants attached and that when they had to "put the baby down" they would have to reassure the baby and how was this done? That's right, singing, vocal soothing melodies that say, "I'm here and you are OK." Falk believes that these melodic vocalizations led to the first baby talk. And that first baby talk/sing played a crucial prehistoric role in "kindling the first sparks of language." Motherese or these melodic vocalizations are found across all cultures and are the first steps in language acquisition.

There's more, but why am I writing this here?
1. I miss singing to Caitlin, holding her and singing. It didn't matter if she was sleeping or awake, I sang whenever I could. I left a digital recording of her songs so she would know I was there when I wasn't. I sang her to heaven when she passed, I didn't sing for a very long time after she died. I sing at her grave sometimes or play her songs and think, "Do you hear me? Do you know that even in death I am here with you?" I guess most view the dead singing/saying to those left behind, "I am here with you, I'll never leave." But, I'm more worried about Caitlin knowing that I am with HER.
2. It breaks my heart that some adults view "baby talk' and "singing lullabies" as not needed, or they are embarrassed or believe they are "tone-deaf," or they just don't know that that fabulous CD by the latest children's star is not what your baby needs. Your baby needs YOUR voice, your love, and your interaction. Please, sing. Our children need to know that we are here and they are OK. Your voice performs the amazing feat of taking the intangible (love) and making it tangible (real physical vibrations that move through air).

Sunday, March 22, 2009

Grown Stronger and yet . . .

I have grown significantly stronger since Caitlin died. I've gained much on this journey, but I've noticed also that with that strength there are a few things I've lost. Yes, lost.

I've gained an ability to intellectualize more readily painful and challenging situations. Many times, I can actually see my emotions and discover where they germinate and then make a rational decision about how to proceed. Not all the time, but more frequently. With that intellectualism, I've lost some sense of emotional connection to Caitlin. In grief, tears and sadness felt like all I had with my daughter in death. These were real and tangible, reason---seems less real and, feels, sometimes cold.

I've gained strength in recognizing during casual conversation when talking about Caitlin fits. And I've lost the fear to talk about her most of the time in those casual conversations. I've lost the fear of making others uncomfortable. If the talk is about babies, I share what I know about my baby. If the talk is about special needs, I share what I know. I don't stay there, as with other "normal" conversations, I allow the conversation to morf into other topics. And I allow others to share whatever loss (though sometimes stretched "friend of a friend that I heard about") they have experienced. After all, everyone wants to connect in some way.

I've gained introspection, and lost some of the poetry that came so vividly in the acute stages of grief--when words tasted and came to my mind in images and combinations that I didn't know I had in me.

[ICLW friends, welcome. If you haven't been here before, you can read 25 Things about Me (Bereavement Version). That will catch you up!]

Thursday, March 19, 2009

Pouring another's Pain with My Own

Somehow, it's comforting.

I asked a friend who had lost her mother, if I can expect to do this again. What is this? Pouring another's pain with my own. I don't know why, but it helps. I suppose because I feel less lonely. Perhaps, it dilutes my sorrow? Feels more like immersion, so that's not really it.

Well, it's no sleep night. I'm in a familiar, but different grief place. I watched all of Caitlin's videos and cried and stared and felt my heart hurt. The poetry has subsided, but what still helps is the community of other bereaved mothers (fathers too, but I know so few). I read the blogs of others, scattering a few comments, and then read some new blogs--a mother with a baby with DS who died, a mother who feels the pain of seeing a mother with her living child, a mother who expresses her anger for remarks that ignore the birth of her child, and so many more.

I read until I feel better? No, it's more than the comfort of knowing I'm not the only one whose baby died. Some comfort comes in being understood, but it's not a particularly warm comfort knowing others hurt this much. It's horrifying actually.

Let's see if I can describe this phenomena with an analogy. It's like I have a cup of liquid pain. I get another's cup and pour it into an already full vessel and then it happens, my cup expands and makes room. With each cup I pour, the vessel transforms into a boat to keep me safe and help me navigate this now ocean of grief. And the wind in the sails that moves me across this expanse, is the knowledge shared, and the expressions of love for our children in story, poetry, song, painting, and sculpture and photography.

And now, sweet sleep, as I have arrived on my home shore safely.

And, my friend? What was her answer? "No, expect something different." I'll be honest, even after Caitlin's death, I still have this sense that those I love will always be with me. Perhaps this irrationality is evidence of my "healing."

Tuesday, March 17, 2009

Buckup Facebook Friends

In modern life, or rather life in the 21st Century, one must get comfortable or at the very least, manage a life in a complex world--and one must get comfortable and manage one's e-life in an equally complex virtual world. The bereaved navigate emails, blogs, forums, work google docs, and social networking sites just like everyone else. Grief is a real and tangible experience, and expressing it in a virtual world is difficult at times. It's also quite lonely and in a society that seems to want only happy and no sad, it can be painfully isolating.

Of the places where e-life is difficult, Facebook poses numerous challenges. It seems many of us have given in to a life on the internet. We are becoming that kind of society. I can't imagine it ever being OK, for parents to not grieve their children. After all grief isn't virtual, it's real. You feel it in every cell of your body, every neuron in your brain, and every space in your soul. But, does grief belong on FB? It's a social networking site after all, be sociable.

Yet, FB seems to be a social network where "friends" seem to only want to hear happy things. But, wait, that's not exactly true, unhappy things can also be posted, but those should fall under the categories of "rambling on endlessly about nothing" or "self-indulgent complaints about none life-threatening situations" or "sarcastic rants about this and that." Post a real, raw and human emotion and be prepared to be ignored or deleted. I think most bereaved parents find it difficult to participate in a faux life--even on the net. Why wouldn't we post about the most significant event in our lives in the past year or so? The answer seems to be "we do" and frequently we are silenced because "friends" don't want to hear about it. To be clear, this is pretty much what we encounter in real life, too. So, we go to forums, blogs, memorial pages, and the like to express what few want to hear, but I digress.

It seems acceptable to gush honestly on FB, but grieve no. I would be all over it if Caitlin had lived."Name is watching her daughter throw Cherrios around." That post would get dozens of thumbs up and comments like, "wait till they throw soup." But, dare to post, "Name is visiting his child's grave" and more isolation may ensue. A friend with 400+ "friends" posted that s/he missed her niece who had died as a child and 2 of us replied with messages of support.

It's perfectly acceptable to whine on FB. That's fine, I guess, everyone ought to have a space to voice some frustration and irritation. "Name is sick today." "Name got a parking ticket." Numerous friends respond with "that sucks" or "I'm sorry you're not feeling well."

So, I say: Buck up FB friends! When you read "Name is missing her child today," try continuing to be human and respond with "that sucks" and "I'm sorry."

[There, I said it and I'm glad. I could have saved 477 words, if I had just started with that!]

Sunday, March 15, 2009

"Mildly Retarded" is Not a Punch Line

This true story goes under the category of "Oh, Scheeez." I've been off the blogosphere for several days while attending an education conference. I attended a terrific session where the presenter was upbeat, funny, and passionate about his/her subject. I'm smiling and laughing with the rest of the group when something in the system is that is not working and the punch line to the clinician's description was "And that's just mildly retarded." The group of 100+ participants all laughed. I felt like I had been stabbed. My smile was gone. My eyes began to sting, and I was in a panic. I thought about leaving, but something kept me glued to my seat. My body began to warm and then burn with anger. The tears subsided, and instead of continuing to take notes, I began to write the clinician a letter. Here is that letter exactly as I wrote it with brackets for explaining my thoughts more clearly here:

Dear [Name],

As the mother of a child with Down Syndrome, I'm asking you to re-think using "mildly retarded" as a joke line. This was so painful to hear a group laugh [around me], although, not directly about the use of the cognitive challenges of those with DS [it still hurt]. I can hear you are a passionate and caring educator and you know the power of [your subject] for all children. Please, reconsider.

Because of that extra chromosome my daughter's heart and digestive system were also retarded physically. These challenges contributed to her death at 11 weeks. I recognize this note is from a bereaved mother and perhaps some believe I should understand the ease some use this word for a smile. However, I must honor my daughter and voice my concern. Thank you, for considering my plea.

I signed it and spent much time sitting and staring with feigned interest as I contemplated whether I would deliver the letter. The pain had eased for me as I wrote the letter, but did I need to deliver it? I've been a presenter many times, and I would not have appreciated such a note because, I would not have had an opportunity to personally apologize. But, could I voice this objection and request in person? I knew I couldn't do it publicly; I didn't want to become someone others would gossip about through the rest of the days of the conference. "Were you there when that mother started crying and got so upset about something the presenter said?" "Who was she?" "What's her problem?" "I feel bad for her." That would have made it about me and not about educating someone who educates another to think carefully about the message he/she sends about individuals with special needs.

But, it was about me. It was about the real pain I felt when words were used that had the effect of dishonoring my baby and others with DS. It was about the need to advocate for sensitivity in this educational setting, after all, I hadn't paid a fee to see a stand-up comedian. I looked down at the session hand-outs and saw that one of the suggestions was to "be a risk-taker." And so I decided to take a risk.

Risk, being known as oversensitive.
Risk being known as "crazy bereaved."
Risk being a conversation topic.

Upon choosing vulnerability after the session, I patiently waited to talk with him/her. And I shook his/her hand and didn't let go. I pulled myself closer to him/her and said the words that I had concisely practiced throughout the rest of the session.

"[Name], I have a personal request. I'm wondering if you would reconsider using "mildly retarded" as a laugh line. I have a daughter with Down Syndrome and this was . . ."
He interrupts with a hug, "Oh, I'm so sorry. Of course. Of course."
But, I had more that I had rehearsed.
"Not only was she retarded, but she was physically retarded as well, and so her DS contributed to her death."
Another hug with an "I'm sorry" but this time I can see a true human connection.
"I'm taking a huge risk in asking you this, I know. But I think that it was because of the kind of person you have presented yourself in this session, that let me know that you might be receptive. After all, I am an advocate for Arts education, but I'm also an advocate for children with special needs. Thank you."
He hugs me again, and I leave.

There may be gossip. There may be talk. I hope there is. People ought to consider how easily they marginalize others with their words. People, especially educators ought to think carefully about how seemingly innocuous "jokes" can hurt and send a message to others that it's OK to use another's life challenges (such as mental retardation) to make themselves or others feel better through laughter. And people ought to make their voice heard when they feel the hurt when the ones they love are marginalized.

Now, some will read this story and want to know, "Who was that?" "Where did it happen?" I believe from the presenter's words and actions, that he/she was receptive and his/her response was sincere, and I was most appreciative. So, I ask that you don't go there--to focusing on details that blur the purpose of telling the story. Because, I'm certain that who and what is not what's important here, this is not a newspaper story. To my mind what's important is that we think about our words, and the intended and unintended messages we send to others.

Wednesday, March 11, 2009

Won't Ignore My Daughter's Life

You know, I won't ignore that my daughter lived. I won't remain silent when someone asks, "Do you have any children?" "Yes, she lives in heaven." And, I'm pretty comfortable with that. And on this journey, I have also encountered those who upon hearing me speak of my daughter get quiet, change the subject, or walk away--sometimes they actually walk away from me and sometimes they walk away electronically.

I will answer honestly with "It's been hard this past year and a half, because I'm surviving the death of my child," when someone from another life, another world, another time "finds" and "friends" me and cheerily wants to know how I am. I am more interested in honoring the life and death of my child, then worrying about whether I shocked the person into their own silence. I'm not happy about educating others about how to speak to a bereaved mother, but I'm not exactly shying away from my imposed task. And, if I could have spoken in person, I would have wanted to say, "It's OK to say 'I'm sorry.' Those two words show some empathy and compassion."

Here's my ridiculous question, that I know has no answer. "Why can people spew so much hate and find so many phrases and labels to hurt others, but can't find the air to whisper, 'I'm sorry'"? Why can some discuss whether I've moved on, lost weight, or am still sad, but can't find the time to mention, "I was thinking about you and your daughter today."?

Well, no matter. I am OK. I have plenty of family and friends and strangers too, who love me and do say those things. And so, because I have received what I need to survive, I thought I ought to pass it on. To my fellow bereaved mommies I say:

I am so sorry. I think about you and your children frequently and send you hope for some strength and healing.

Saturday, March 7, 2009

True Story

Out of no-where here comes True Story:

I once pulled out of a parking space so enraptured with how much I was in love with my new boyfriend (now my DH) and encouraged by "This Kiss" by Faith Hill on the radio I ran my car into a high curb and when people would ask about the dent, I would shrug my shoulders.

I heard the song on the radio today. It was sweet, until I remembered how I backed into a curb because I was giddy in love. was worth it.

DH is my compass, my true story, still.

Tuesday, March 3, 2009

Teaching and Tears

So, I've grown pretty strong since Caitlin's death. I carry my grief pretty well. But these last several days have kicked my butt. I begin with my economic stimulus plan day, then the holding a baby day, then ignorant-unthinking hurtful comment day (I didn't write about this one at length, but will as soon as I make sense of what happened), then Phoebe Snow story day, and then a brief hibernation (literally, we had a snow day), and finally today--the day of teaching and tears.

During a lecture that I've delivered a hundred times about the importance of singing to infants, I tear up in class. I see Caitlin in my arms. I hear our songs. I feel that hope that physically hurts me--the hope that she live, that she gets better, that we get to bring her home. It was all so sudden and extreme that I tears welled, and I had to turn away from the class. I choked out more of the lecture until it passes enough to go on. But the rest of the lecture offered more outward evidence of my grief, the stuttering and the slumped shoulders of defeat.

I am sick of the snow here, but long for a cave of quiet to hibernate until spring truly decides to join us.

[And in my cave would be a video phone with a direct line to my parents, because I owe them a phone call and I feel so crappy guilty about it, and yet in my state, I can't bring myself to call anyone. It just feels like I suck as a daughter, you'd think bereaved mother of a daughter would know better! Love you mom and dad. I'll call soon.]

Sunday, March 1, 2009

Phoebe Snow "A Mother's Song"

DH and I have a few TV shows we watch, and fewer still that we will record. Well, I love Sunday Morning, so we record and then after church we drink coffee and watch the stories about life, politics, art, music and bet on whether the nature scene will include birds or not (it usually does!).

Well, today there was a story about Phoebe Snow of "Poetry Man" song fame, but oh, that song is not what defines her. The interview with this songstress was poignant and real. She told her story of her daughter who suffered afixiation at birth, and lived until she was 31 with her Phoebe. Phoebe's grief was apparent and so what the strength and joy of telling her daughter's story. I was grateful she told it. She talks about how hard it was to sing after her daughter died, and the tears that were already welling in my eyes at last let go. Her friend Linda Ronstadt told her that she had to sing about Valerie. In Phoebe's performances, she now dedicates a song she originally wrote for her mother, and now sings for her daughter. I immediately went on iTunes to download below is a youtube vid if you would like to listen.

The lyrics that most resonate for me are "Everything good I am you taught me. Everything good I am." It's not that I started out as an unloving person, but Caitlin made me love in ways I didn't know I could. This growth of understanding and actively loving in deeper and more profound ways is typical of parents with living children, I know. But, my experiences is that another dimension is experienced when too soon that love must be expressed through grief. One struggles to express love to a child no longer living. You hug the air, stare at the moon and try to pull it to you, and wonder at how the world continues when all has ended for you. Then you struggle to love in this new strange world, and something bursts open in you--an echo of the first time you saw your child only louder than the first sounds of love in your heart, a bit of a reverse echo, if you will. And this something makes you love others more, love nature more, love struggle more. The possibilities for loving overwhelm you that sometimes you are rendered inert and other times you write, paint, and, as Phoebe shares with us---sing.

The song's title is "You're my Girl," and the album she describes as a "love letter to my daughter."

Here's another link to her story if you are interested.
Interview with WOW The Women on the Web