The essence of Christmas,  of which we celebrated the first round yesterday, in a few photos.

As I sat there, wet hair being combed and snipped, it struck me that the last time I’d been here — in late May — Mum was alive and healthy. How can so much change in between two hair cuts?

People ask me how I am — and I know they mean it. I say that I’m mostly OK. I mostly am. There are moments, lots of them, when my thoughts collide with reality. My counselor says I’m still in shock. It doesn’t feel like it. So how will I know when I’m out of shock?

I tend to get saddest at night, before bed. Perhaps because the day is finally quiet and I have time to do more than go from one activity to the next. I started crying the other evening and Adam held me and said something to the effect of, “You haven’t cried in a few days, so this is probably good.”

Sometimes I’m not sure if I’m supposed to talk about Mum or not to other people. Today I’m wearing a shirt she bought me. A coworker complimented it and I mentioned it was from my mum. Then wondered if I should. But then I remembered that it’s only a terribly sad thing for me. At most it might make someone else feel a bit awkward, if they don’t quite know how to react. I’m not always sure how it will make me feel, to talk about her. Sometimes it feels warm, sometimes hollow.

A better answer to how I am is that I miss her every moment, ever day, but most of the time I deal with it all right. Some moments are harder than others: Duncan’s birthday (which I was sure she’d still be here for), getting my haircut and realizing my hair dresser knows nothing of how my life has changed in a short interval, holding Berry while she cries, loudly missing her Nanny.

At Mum’s memorial service, Christopher told a story about her ability to hold onto things for years.

He used the example of yarn that she used in an airplane sweater that she knitted for him as a child. She carried that yarn all the way from England, to Barbados, to several houses in Florida all the way to Oregon over the years. And she used those same balls of yarn for the same sweater pattern thatbshe made for his son, her grandson last year.

I now have that yarn in my garage. I may need it for a sweater for my grandchildren…

My story about Mum holding onto things is about her curtain rod. It hung in her bedroom in England. It travelled to Florida, by way of Barbados to hold up her bedroom curtains for years. Then it came to Oregon, where it fit none of her windows, yet she still kept it.

And now? Now it’s in my car, the very last of her things to empty out from her house. It’s clean and vacant in there now. I said goodbye for one last time and shut the door. Time to go home, unload and see if it the blasted curtain rod fits in Berry’s room, where Mum’s curtains, that I made for her from bed sheets, now hang.

That moment was hard. I’m grateful for it – that it’s sold, that we have the money for it, that we don’t have to move it or deal with it anymore. But it was hard to see it go. It’ll go in the bedroom of a girl, upgrading from a kid twin-size bed to a mature, pretty bedroom set. Her mom offered her condolences, and I told her and her daughter how much Mum loved that furniture.

Yesterday I took Mum’s cable TV modem and box back to Comcast. Initially, the customer service rep balked at someone other than the account holder returning items. “She’s dead,” I said. He accepted them without another word.

On Tuesday, I went to vital records to get copies of her death certificate (in case folks like Comcast thought I was merely ripping the cable out of my mother’s apartment, denying her the pleasure of Desperate Housewives — my favorite vapid show, not hers). The woman behind the counter (after she got back from a long break) offered her condolences, too. She said she couldn’t imaging not having her mama around. I couldn’t have, before, either. I made it back to the car before I started crying.

I took the kids to the airport this morning to spend 2 weeks with Kevin (I picked Kevin up from where he was staying at a friend’s house down the road and took him, too). Now I’m back at home, in an empty quiet house with the summer sun warming up the world outside. Their bedrooms seem empty. I know I’ll see them again soon and that they’re fine.

In fact, they just called. They’re safely in Chicago, looking for the pizza place that Duncan likes to eat at (it’s his favorite pizza restaurant). They love me very very very very very very very very very … very very very very much! And that makes me cry a bit too – with gladness, at least.

There’s a way that Duncan looks at me sometimes that fills me with joy. He looked that way this morning in between rub-a-noses and kisses goodbye at the airport. There’s a sparkle in his eye and a little crinkle in his freckle-covered nose. It melts me. And makes me realize that any of the things I’ve let go of or given up in order to succeed at motherhood are entirely worth it.

Being strong and put together is hard work. I’m grateful for it, though.

Here’s the eulogy and song.

I’m glad we’re moving through all the things that need to be done, checking each one off. It’s hard, though. I’ve been slowly going through the things in her apartment. We’ll keep some of it, but most of it needs to find a new home.

I sorted through her clothes and shoes and donated them to Womenspace on Friday. She had 42 pairs of shoes — most of which were high heeled sandals. Shame we aren’t the same size. I’m packing up her multitude of books which I think we’ll donate to…oh, it’s name escapes me now…but my mother-in-law-equivalent has that covered. They sell them on ebay and use the funds for the legal services they provide.

I need to post some of the larger items on craigslist: her bedroom furniture, patio furniture, couch, dining room table and chairs. And then have an estate sale, hopefully next weekend.

The kids are doing OK, although are showing signs of regression — like both Duncan and Berry peeing in their beds last night. And Emma woke up with growing pains. There seems to be more frequent breaking down into tears, too. D and B will be going to their Dad’s for two weeks soon, which I think will be a good break for them. They’re looking forward to “Daddy Camp.”

The last two days of her life were difficult for us. She rapidly became less able to communicate and seeing her unable to make even her basic needs known was heartbreaking.

On Sunday, we brought her to my house, realizing that it was her last trip, that she wasn’t going back home again. Hospice ordered a hospital bed — which made helping her sit up to drink a lot easier. She ate breakfast that morning — some fruit and a cup of red rooibos tea, shuffled to our house, and went to bed. That turned out to be her last meal.

There are many things I’m grateful for:
Your prayers and loving thoughts.
Being with her and taking care of her with my brother, Christopher.
Sitting up through the night with her, playing reggae music and singing songs, until Christopher sent me to bed for a couple of hours.
Talking with her, letting her know we love her, that we’ll be strong for each other and letting her go.
Putting on Goddess Inside and Another Star in the Sky (my recordings). She took her last breath during Daydream Song.
Knowing that she’s no longer trapped in a dying body, that she’s free, that she has peace.

Some photos from her last couple of weeks.

After Berry and Duncan’s ballet recital on June 4.

At her apartment on June 12.

Saying goodnight to Berry after dinner on June 15.

Hugging a somewhat reluctant Duncan the same day.

Having a rest on the couch on June 18.

Leaving her house in her PJs on Sunday, June 19.

That’s the last picture I took of her.

Watching her during the night, that Sunday, she still looked beautiful. I curled up in bed with her for a while, knowing that soon I wouldn’t be able to do that anymore. She always gave good snuggles.

Mum seems to get a bit weaker every day. She’s on medication for high blood pressure and a diuretic for swelling now. Along with a steroid to give her some energy, cough medicine for the previously unending cough, something for her liver and narcotic pain medication. The Hospice nurse brought over a medication sorter-outer, with boxes for each day, but I have yet to figure out what to put where to get it set up.

She’s having a lot of visitors. Which is nice, yet an exhausting whirlwind. Hospice comes again today and I think a bath aide starts next week at 3 times a week.

Mum’s not up for reading and answering emails at this point and talking on the phone is getting harder for her. I’m happy to read email to her (although I may not manage a reply either), so feel free to send it to me at joanna.y.bartlett@gmail.com. My cell is 541-525-5144.

At this point, I’m not holding out hope for a curative miracle. Kevin and I have talked to Duncan and Berry via Skype about Nanny’s body not working anymore and that, when it stops working, she’ll die. It’s a hard truth, but one they need to know is coming.

It’s hard to hold sentences together when you keep getting interrupted…

People are asking what they can do to help. I haven’t quite figured that out yet. Meals are helpful – although we’re something of a large and difficult crowd to feed. I’m gluten-free, Adam is vegetarian, and then we have 4 kids.

More later. I’m off to Mum’s now.

Today we learned that Mum’s bilirubin level is 3.5. About 10 days ago it was 1.8. Over 4.0 means liver failure. Things don’t look good. At this point, her oncologist estimates she has 2 to 4 weeks left to live.

I took her home from the appointment and a parade of hospice folks arrived: someone delivering oxygen and a wheelchair, a chaplain and a social worker. Their almost simultaneous arrival was unplanned.

Thanks to all of them, Mum now has oxygen at home and portable oxygen, a wheelchair in case we want to take her places, a lifeline alert system in the process of being set up, a volunteer to come over and record her thoughts and stories and a bedside commode on its way.

Christopher arrives from France tonight and will stay for 2 weeks.

I can’t imagine how Mum feels, having her time on Earth cut so short. I’m reeling, myself.

I’m not sure what we need at this point. Other than WiFi at her house so I can work from there in the afternoons. I want to spend as much time as I can with her, as heartbreaking as it is to see her body cease to function. I go between realizing that we’ll have to say goodbye soon to believing that she’ll somehow fight the cancer back and become a world-traveling evangelist for alternative cancer cures.

Keep sending those good thoughts. We need them.

Just finished making this delicious looking concoction for Mum. It’s Essiac tea, nurse Caisse’s original formula. The instructions said to brew it for 10 minutes, stir, cool overnight in the fridge, stir, boil again for 10 minutes, then strain. Mmmmm! I feel a bit witchy now.

We went to the oncologist on Wednesday. Really nice man. His son goes to the same school as Duncan and Berry. He was compassionate, kind and funny. Well, not exactly funny, but warm.

The news isn’t good. Mum has a lot of masses in her lungs and liver that shouldn’t be there. He clearly explained the chest x-ray, telling us what is normal (lots of black space) and what isn’t (all the white bits that look like cotton balls). In her liver, she has a 13 cm mass.

In terms of prognosis, she has a guesstimate of 3 to 6 months until either her liver or lungs fail. Chemotherapy is the only conventional treatment available and that may prolong her life, on average, for an additional 3 to 6 months. However, the treatment lasts 4 months and comes with a host of unpleasant side effects. There is no known cure.

The current plan is to reduce her symptoms (coughing, shortness of breath, difficulty sleeping) so that she can feel as well as she can, for as long as she can. We’re also upgrading her diet to include lots of nutritionally supportive foods — flax seed oil, chlorella smoothies, fresh vegetable juices.

The oncologist mentioned a naturopathic physician he’s worked with. Mum has an appointment with her on June 20. Hopefully she can recommend the right supplements, dosages and diet to support her body’s own healing ability. We’ve got lots of people praying for us, too (which is very appreciated — thank you).

I seem to be compartmentalizing things. There are the things I need to do to make sure Mum has what she needs (insurance, medications, people to clean, make juice, help watch kids, etc.). There are things I need to do to make sure I’m OK (exercise, sleep enough, eat good food, keep my own doctor/therapy appointments).

At times it’s overwhelming but, so far, I’m so busy I’m handling it OK. It’s the quiet times when it gets hard. And I know there will, eventually, be harder times ahead.

But today, I have my Mum. Today is what we have.