Day 13: Books on Grief

I have not read very many books on grief.  Most are just too hard to read. I can imagine a day when reading books on grief will be more helpful but I am not there yet.

There are two books that I have read and found helpful. One is written by a mom while still fresh in her loss. Her young daughter died in an accident. I appreciate this book because Mrs. Chapman's words portray the rawness and reality of such loss. She holds on to her faith in God but shares honestly her struggles with her faith as well. The second is written by a dad who is ten years down the road from his loss. His daughter was born with an undiagnosed syndrome that carries an intellectual and eventually physical disabilities. She passed away at the age of ten. This book gives a longer range perspective on loss and grief and faith that I appreciate very much. It offers hope while acknowledging the years long struggle with grief and its impacts on every facet of life.

"Choosing to SEE: A Journey of Struggle and Hope" by Mary Beth Chapman

"Megan's Secrets" by Mike Cope

This post is part of Carly Marie's Capture Your Grief Photography Challenge in honor of Pregnancy and Infant Loss Awareness Month. To learn more please visit http://carlymarieprojectheal.com. 

Day 12: Article

Today's assignment was to share an article that I have found helpful or meaningful in grief. An article I found shortly after Julia passed away described grief as a piano. I still love it. It's about how grief starts out as an overwhelming, intrusive, looming force. A force that requires your full attention. Over time, although the presence of grief does not diminish, grief can be integrated into the background of our story. We can engage it or not. We can make it center stage at times. What we do with it can make it beautiful as we remember the beauty of the love represented in the grief in the first place. To read it please see this post: One Month.

Another article I recently read about grief is a good description of how it affects the bereaved. It is called "Grief Intelligence: A Primer" and can be found at http://m.huffpost.com/us/entry/3716013.

This post is part of Carly Marie's Capture Your Grief Photography Challenge in honor of Pregnancy and Infant Loss Awareness Month. To learn more please visit http://carlymarieprojectheal.com. 

Questions and Pregnancy

People love to ask pregnant women questions. When are you due? Is this your first? How many other kids do you have? Is it a boy or girl? Aren't you so excited? You have how many more weeks left? The same is true when you have a tiny baby. Many questions and comments. How old is she? She must be brand new! Was she a preemie? How early was she? How much does she weigh? She's so tiny! Were your other kids small, too?
I have come to dread these questions from strangers. When I was pregnant with Julia I tried not to give people the chance to ask me questions. The answers were so hard and so complicated. I had too much amniotic fluid, so I always looked further along than I was. I was so anxious and worried about her various conditions. After she was born I would also answer questions in an intentionally vague manner. Yes, she was born early. She has a genetic condition/heart condition that keeps her small. Yes, she is tiny. During this pregnancy, the questions are still hard. Yes, I am excited, but I'm also grieving. No, this is not my first child. It is my fourth. Yes, I will have my hands full (but not as full as I wish).
I truly do understand that people mean well. Most of us think of pregnancy and the newborn stage as a happy time. My first two times they were. When you have a difficult pregnancy or when you have suffered infertility, infant loss or a miscarriage, pregnancy can be full of fear and worry. This is not because of a lack of faith or hope, but because some of us have been there, and we know that sometimes things are not okay.
I wanted to write this just in case the next pregnant woman you see is the 1 in 4 (!) women expecting a baby after a loss of some kind. Wish her well if you'd like, or just give her an encouraging smile -- something every pregnant mom-to-be will always appreciate.

One Month

Today it has been one month since we lost Julia. I have no words to adequately describe life without her. However, I found this piece on grief that seems significant to me.

Profound grief is like being in a stage play wherein suddenly the stagehands push a huge grand piano into the middle of the set. The piano paralyzes the play. It dominates the stage. No matter where you move, it impedes your sight lines, your blocking, your ability to interact with the other players. You keep banging into it, surprised each time that it's still there. It takes all your concentration to work around it, this at a time when you have little ability or desire to concentrate on anything.

The piano changes everything. The entire play must be rewritten around it.

But over time the piano is pushed to stage left. Then to upper stage left. You are the playwright, and slowly, surely, you begin to find the impetus and wherewithal to stop reacting to the intrusive piano. Instead, you engage it. Instead of writing every scene around the piano, you begin to write the piano into each scene, into the story of your life.

You learn to play that piano. You're surprised to find that you want to play, that it's meaningful, even peaceful to play it. At first your songs are filled with pain, bitterness, even despair. But later you find your songs contain beauty, peace, a greater capacity for love and compassion. You and grief -- together -- begin to compose hope. Who'da thought?

Your grief becomes an intimate treasure, though the spaces between the grief lengthen. You no longer need to play the piano every day, or even every month. But later, when you're 84, staring out your kitchen window on a random Tuesday morning, you welcome the sigh, the tears, the wistful pain that moves through your heart and reminds you that your child's life mattered.

You wipe the dust off the piano and sit down to play.

By Steven Kalas

One month down. A lifetime of months to go. I miss you, Julia, with every heart beat.

Quotes

The following is a sample of quotes I collected over the last year. Authors range from fictional characters to First Ladies and from bloggers to theologians. They speak truth to the journey I am on and give words to feelings I cannot always describe. Some express hope. Some express grief. All express love. These quotes resonate with me in some way and I hope they will with you, too.

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing you think you cannot do." Eleanor Roosevelt

"Hope is the ability to hear the music of the future. Faith is having the courage to dance to it today." Peter Kuzmic

"Sunday will come. After the Fridays of ur lives, Sunday always comes." From the blog of Rebekah Peterson (mom to 18 month old Aaron with trisomy 18)

"I have found the paradox that if I love until it hurts, then there is no hurt, but only more love." Mother Teresa

"Time does not heal all wounds. Love does. And there is a lot of love in my life." From the blog of Tanis Miller (mom of four, one of whom passed away suddenly at the age of 5)

"Has God brought you to a place of nothingness? Be still and know that He is really God. When this happens, your nothingness will be turned into something you will value for the rest of your life." Mother Teresa

"Sometimes the littlest things take up the most room in your heart." Winnie the Pooh

"Faith is risking what is for what is yet to be. It is taking small steps knowing they lead to bigger ones. Faith is holding on when you want to let go. It is letting go when you want to hold on. Faith is saying yes when everything else says no. It is believing all things are possible in the midst of impossibilities. Faith is looking beyond what is and trusting for what will be. It is the presence of God in all." author unknown

"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love." Washington Irving

"For what we need to know, of course, is not just that God exists, but that there is a God right here in the thick of our day-to-day lives. Who in one way or another is trying to get messages through our blindness as we move around down here knee-deep in the fragrant muck mad misery and marvel of the world." Frederick Buechner

"What we have once, we can never lose. All that we love deeply becomes a part of us." Helen Keller

"They say that time in heaven is compared to the blink of an eye for us on earth. Sometimes it helps me to think of my child running ahead of me through a beautiful field of wildflowers and butterflies; so happy and completely caught up in what she is doing that when she looks behind her, I'll already be there." author unknown

"Why did I suffer sharp pains of inward grief? It must have been the fresh wound caused by the break in the habit formed by our living together, a very affectionate and precious bond suddenly torn apart...Now that I had lost the immense support she gave, my soul was wounded, and my life as it were torn to pieces, since my life and hers had become a single thing." Augustine (Thanks to Jamey for this one.)

I love and miss you, Sweet Pea...so much.

Tigers and Dragons

The following article appeared in the New York Times Sunday Review this week. (Thanks, Lisa, for sharing it with me.)  The article was written by a mom to a child with a terminal illness. It is heartbreaking and powerful and true. I am thankful for authors like Emily Rapp for bravely sharing such difficult experiences.

Notes from a Dragon Mom

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

My son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

Thank you for reading this.  I believe Ms. Rapp has much parenting advice to offer all parents.  The best parenting books can offer no better wisdom than this: "Parenting, I've come to understand, is about loving my child today." I am thankful for today.