This is my story of that day.

–

October 5, 2010.

Time: 7:17 AM.

Today Gracie has her checkup MRI.

Yesterday I was in stress mode.

Worry mode. Upset about every worst case scenario I could imagine, from her dying under general anesthesia to them finding a tumor they have to operate on immediately to them finding cancer everywhere and we start on the draining progression of chemo and radiation, spiraling downward until we hit hospice and the end.

I imagined what I would do without her. I think I would just leave. Pack a carry on bag, empty my bank accounts, and just leave, disappear for a while among untweeting strangers in nowheres without 3G or broadband or unlimited mifi.

But I’m not thinking about that today.

Or at least not much.

Today I’m in handle mode.

I packed a bag with craft stuff and Dr. Suess books and healthyish snacks and juice boxes and water and a plastic bag just in case she needs to throw up in the car. I have post its with directions and a checklist of what else goes in the bag when she’s up (a sponge, shoes, a change of clothes, her Dora doll).

I don’t have time to be upset.

And as soon as G is awake, I can’t be flipping out, I need to find my calm so she stays calm and unscared and able to handle everything.

So I rely upon text messages and DMs and @replies and FB comments for support and sanity and grounding.

To remind me that she’s probably fine, that they really isn’t anything to worry about, that she has no symptoms so there’s no logical reason to be concerned. To know that someone out there is on my side. To feel that I’m not alone.

And now it’s time to go wake G up. Sigh.

–

Time: 9:27 AM (originally written in my Moleskine journal)

Triple booking.

Apparently they schedule three people at the same time at the MRI (which takes 45-60 minutes per body part), perhaps so they can always keep the MRI going all day and never have to wait for a patient.

So, instead, my five year old is waiting. My five year old who has not been allowed to eat or drink since last night. So far, she’s been waiting for 45 minutes. She’s doing great, playing with her daddy, drawing pictures, looking at the florescent colored fish in the tank they just turned on.

But mommy is getting pissy.

The soap here is the same.

That same pink antibacterial soap as the parent’s bathroom in the PICU, the same smell I used to rinse myself off with every time I went two or three days without a shower.

I hate that smell. It means artificial and survival and out of control.

There is something about hospitals and medical facilities that is dehumanizing.

Where there is no information, you are just lucky to be here and have them service you. However long you have to wait.

#hospitaltime

(a few minutes later)

Now we are in a second waiting room. Perhaps this is progress. It feels like it for Gracie, who is having fun with the toys in the second waiting room (the first waiting room had nothing to look at).

We are allegedly “waiting for the doctor” (the anesthesiologist?).

That’s another aspect of Hospital Time — everything is about waiting for multiple disparate parts to coordinate themselves. The facility. The nurses. The doctors. The staff from a different department. The person who pushes the gurney that is apparently impossible for anyone else to push, perhaps due to the secret pro-gurney action committee.

All separate, all inefficiently coordinated.

–

Time: Now

I was going to keep journaling all day to share the rest of my experience.

How comfortable G was with getting up on the table, being hooked up to machines, being sedated. The line of 20+ at Starbucks, necessitating that I go get a diet pepsi at Panda Express (and I didn’t get orange chicken! a miracle!). The fact that I peed every 15 minutes all day long (where did all that liquid come from?!).

How my heart jumped when they came out asking for “Gracie Weinstein’s mother.” The adorable way she rolled over, pulled out the air tubes on her nose, and cuddled up with her Dora doll, as soon as she flipped from full sedation to napping. How she wanted to take steps on her own as soon as we walked 10 feet down the hall so she could use the restroom.

How when we got home, she was excited, playing, eating everything in sight … and I felt hungover, like I wanted a nap or a pizza or the largest coffee sold in Northern California.

But I didn’t write any of that.

I needed to do nothing.

So nothing was what I did.

I read a novel that I’ve already read a dozen times. Watched the special features of Lord of the Rings: The Two Towers extended edition. Talked on the phone. Played with the kid. Ate. Stared off into space.

–

I don’t have news yet – we don’t find out the results of the MRI until next week Monday.

So until then … I’m going to try to not be insane.

We shall see how well that goes.

Gracie 10 days after the tumor was removed

What I have experienced in the last 15 days since my daughter was diagnosed with a brain tumor has proven yet again how blessed I am to be friends with the most generous, smart, caring, and supportive people on this planet.

Thank you to Allison, Ori, Ken, Carla, Sarah, Alison, Scott, and Dave for being in my inner circle, people to whom I could send the most shocking text ever (“gracie has a brain tumor”) in those first few dark hours, people who all immediately found the best ways they could support me – via f2f, texts, phone calls, messages, tweets, blog posts, taking stuff over, and everything else you all did that I don’t even know about. You are all amazing.

Thank you to Allison Nazarian for being the first person I told, who called me immediately as I was still sitting in shock in the doctor’s office, who talked to me on the phone for the one hour drive up to the UCSF children’s hospital. Thank you for being on constant text alert, checking on me, crying when I couldn’t, reminding me to drink water, worrying for me, and every other way you support me every day.

Thank you to Alison Kramer for dropping her life (with 3 kids & her own business) to fly from Toronto to be with me, face to face, in San Francisco for a week. When she texted me the day after the diagnosis asking if it was okay if she came, it was so hard for me to say yes, I felt so uncomfortable accepting such a generous gift of time and support … but I really did need her. Not only did Alison bring Starbucks & breakfast for me every day, and regular snacks for me and Gracie … Alison also brought peace. Alison was a playmate for Gracie, and a friend for me who was 100% on my side. Alison listened to the hospital talk, and also made sure I got out & had fun conversations about anything *but* the hospital. You were an angel for me, Alison.

Thank you to Ken Moorhead for the calls and texts, for immediately taking over my business without asking me (since he knows I would have said no) and for quickly writing a blog post to let everyone know the short version of why I was MIA, even before I could think. Thanks to Ken and Carla Young for doing the heavy lifting of taking over my blog, email, facebook and twitter until I was able to handle it again. Thanks to Carla for being practical and doing research and doing thinking when I couldn’t and for sending an hilarious present to the hospital. Thank you to Ken, Carla, Allison Nazarian, Sarah Robinson, and Johnny B. Truant for volunteering to write guest blog posts to keep ElizabethPW.com online & the traffic flowing. You all made it easy for me to drop everything to just take care of me & Gracie.

Thank you to Ori Bengal for always being available for a phone call, whether to just talk, to listen to my insanity or to distract me with tales of his. Thanks to Scott Stratten for lending me Alison for the week , for keeping tabs on what was going on with Gracie, for the video and the texts & tweets & posts on FB. Thanks to Sarah Robinson for keeping tabs on me & supporting me & worrying for me, even as her own life is crazy/awesome. Thank you to Dave for checking on me, grounding me, always getting me, and reminding me that I’m more than a mom with a kid in a hospital. Thank you to Britt for bringing me desperately needed Starbucks, snacks & toiletries & distractions, and tons of toys and craft stuff for Gracie.

And … thank you to all of you.

Thank you for your emails, texts, tweets, @ replies, DMs, phone calls, facebook posts, facebook comments & likes, blog posts, and blog comments. Thank you for your thoughts, prayers, wishes, energy work, and rituals.

I really don’t know what I have done to deserve having all of you in my life.

I hope someday that I am able to return some of the generosity, caring, and support that you all have unconditionally shown to me and Gracie.

Thank you, and I love you.

#thatisall