Wednesday, January 28, 2009

Magical Thinking.

I'm reading  Joan Didion's "The Year of Magical Thinking."  It's about her husband's unexpected death during the same period of time her daughter was in ICU with septic shock.  I'm sure you're wondering why I'm reading something so depressing.  And that's just the thing, as Didion points out, we hide our grief because it's ugly.  It's too depressing.  We're uncomfortable with it.  So, those who are experiencing pain, loss and grief, well, they too know the rules and quietly slip away behind a locked bedroom door.  

We shy away from those who are grieving.  We don't know what to say or do. So, we say things like:

- Oh, you'll have another baby
- He'll be fine...he'll catch up
- The implants look real 
- This was given to you because God knew you could handle it
- You will learn patience from this
- It was her time to go
- He's in a better place
- An important lesson will come of this
- There must have been something wrong with the baby, so it's a good thing
- Time will heal

 Some of these words are true, some of them are horrible but usually it's not the words grieving people need.  There are no perfect words.  You will never find the right words because they do not exist.  

I believe it's more about the being there.  And giving that person the freedom to grieve, to tell their story, to cry, to talk about it or to not talk about it.  Maybe help them realize that pain does not equal weakness.

Didion describes grief in the following passage:
"Grief is different.  Grief has no distance.  Grief comes in waves, paroxysms, sudden apprehensions that weaken the knees and blind the eyes and obliterate the dailiness of life.  Virtually everyone who has experienced grief mentions this phenomenon of "waves"."

Oh, yes, the waves; the waves crashing down with all their weight.  And the gentle salty waves that constantly wash up against the still raw nerve that runs through you.  Sometimes I truly feel like everything is completely fine. And that is happening more and more - a good thing.  I think to myself, oh this is easy, no big deal at all. Special needs, Williams syndrome, whatever.  I have this under control.  And then, there it an electrical shock that comes on quickly and shakes my bones and zaps any notion of control I thought I had. 

That's the scary part about grief; that you never really know when one of those "waves" might break on you.  I'm fortunate to have a friend who also has a child with special needs. She feels like home.  We say things we would never say to anyone else.  We stand in the park crying because we started talking about our diagnosis stories.  That's rare...that we cry, by the way (see...great example of shame for feeling sad, for crying, for grieving!).  Our eyes get watery on occasion, usually when talking about the future, that scary place for parents with kids like ours; but more often than not, we are watching our kids play and talking about recipes or something simple and ordinary.  But on occasions when things are anything but ordinary, it's nice to have a friend who really understands all the intrinsic challenges of parenting a child like Louie.  She provides an anchor when I need it most.  

The day we received Louie's diagnosis was the day I began my own journey of grief.  And a journey it is.  I vividly remember the date (October 2, 2006), time (5:05), what I was doing (feeding Louie dinner), who I called (my friend who lived up the street; I needed someone there until Chris could get home).  Chris was able to get home quickly.  I remember how I hyperventilated and breathed into a paper bag and collapsed on the laundry room floor.  I don't remember anything after that.  Things just went dark.  

I also grieve for the person I was before that day, the person who endured 16 months of wondering what was wrong with my child.  After having Louie, I was strangely fascinated with pregnant women and I wanted to talk about my own pregnancy and labor over and over.  I don't know why; maybe I thought the more I told my story, maybe I could change the ending somehow.  If I could just go back, I could eat more and maybe then he would have grown bigger in the womb, or not needed an emergency c-section, and not weighed 4lbs 14 oz at full-term.  Maybe I could go back and fix things; magically give Louie the genes he needed, the 7q11.23 region of chromosome #7.  

I haven't finished the book yet.  But just its title, "The Year of Magical Thinking", evokes such emotion and imagination.  Magical thinking.  I wonder how Didion came up with her title and what exactly it means to her.  

For me, experiencing grief has opened the door for magical thinking.  Grief has changed me; molded me into someone I wouldn't have recognized five years ago.  It has made me face my fears and run from them at the same time.  My spirit has been broken; my life unhinged.  But again and again, it is rebuilt, restored and oftentimes, magical.   

You know that bag I said I hyperventilated into?  That's a picture of it above.  I later wrote the word "Breathe" on it and dated it with the day we received the diagnosis.  I plan to destroy it someday.  I'm not ready yet.  I still need it for something; just not sure what.  Proof that October 2, 2006 really happened? Something tangible, something that I can touch, something less ambiguous and painful than those clinical cold words like syndrome, retarded and health issues.  

I don't know.  Maybe I keep it around simply as a reminder to breathe.  To breathe and hold on to the magical moments.   


Em said...

Reading this was so touching. It brought back memories of those early doctor visits. And nights crying in bed. Plus, recent losses in our extended family have caused us to think so much about grief. I used to avoid it. Now I tend to want to read how other people cope with it. I love your bag. And I may have to try this book.

Jenny said...

Hang in there, sweet friend. You are inspiring and such a great mom to Louie and Ace...

camille said...

You take my breath away with your writing. Seriously, you have a gift. Beautifully written.

I'm so glad you have a friend who has a child with special have someone to feel normal with. Such a gift :)

Noel said...

There is a song that was on the radio about the same time as your diagnosis( sept 2006) I remember because that was Abi's heart surgery. I can never remember the name of the song but it goes something like this "Just breathe, Life's like an hourglass glued to the one can hit the rewind cradle your head in your hands and Just breathe"

Thankfully you have a personal connection that understands on a level that most others never will.

Julie said...

That was beautiful. I have lived through my husband losing a son from a previous marriage and Noah's diagnosis. I have to say those were the 2 most horrible days of my life. I am definitely not the person I was then. I feel like little pieces of me were chipped away during both experiences. I try to be strong for everyone, but I have one friend. She isn't even the person that I consider my best friend, but she is the greatest listener and never makes me feel like she is sick of hearing about it. I call her when I am having a bad WS day. I am glad you have your friend. We all need that one person.

Workman family said...

You have a beautiful heart, Jen, and thanks for sharing it! I wish we saw more of each other and maybe when it gets warmer, we will, since we are practically neighbors now. I am looking forward to keeping up with you better through your blog. Don't worry, I enjoy the "long and heavy" stuff. It is what makes us real and helps us know each other better.

Ahnalog said...

I came by to say thanks for "following" my blog -- You honor me with that. And now I get the chance to read some of your beautiful words, as well. This is a very poignant post. Your bag with "Breathe" on it is actually a better piece of art than I have seen in many contemporary galleries. I look forward to reading more of your insightful writing.

Nancy said...

The worst part of grieving for me was waking up each morning before our diagnosis had sunk into my subconscious memory and feeling everything all over again every day. It was horrible. Finally I became familiar with it and knew it even in my sleep. Thank goodness.

This is so gorgeous. Thank you for writing it. You really said it all.

Chris said...

That was one of the hardest parts for me too, but I have never been able to identify it like Nancy did. Man, am I glad those days are over too!

meredith said...

Thank you for sharing your stories. You are a beautiful writer. I read your blog like a good book that you can't put down. Your stories move me. You amaze me. You inspire me. You are unbelievable. What a wonderful mom! I hope to meet you and Louie and Ace someday.

Grace and Fam said...

Great post and soooo true. Thanks for sharing.
John 16:33 " I have told you these things so that you will have peace of heart and mind, Here on earth you will have many trials and sorrows, but cheer up, for I have overcome the world,"

Anonymous said...

You are inspiring and amazing. Although I have not experienced anything like what you've gone through with Louie, we will all experience some heavy, heavy grief in our lives. There will never be the perfect words because everyone's grief is so different. Keep sharing. Your expressions are a blessing to us all. Your friend in California.

Holly Nappi Collins said...

A great post... I went to work after my son's diagnosis of autism and MR--I worked part time in a bookstore.. and the work distracted me enough to help me that day...but when I took a break I found myself thinking about it--like a stab in the heart-- bit by bit--absorbing it all.. it sounds strange but I'm glad that I didn't call in sick..

vamcknights said...

Jen - I wrote you months ago and commented on your wonderful blog via the wslist. I was bored tonight - and doing anything to avoid cleaning my house so I started looking at things in my 'favorites' ... and saw your blog listed. It has been months since I have checked in on you and I am once again completely blown away. You write so incredibly beautiful. You have a way of capturing real, raw emotions - and making them thought provoking. Your blog isn't sad and doesn't give you cavities from being overly-sweet (well, usually) it is just so wonderfully done. I hope you don't mind the occasional eavesdrop - but you amazed me months ago - and I am once again in complete awe of your writing. Let me know when that book is done - I will be 1st in line ! Kelly