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 is...like 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.
