Hello, I'm Jennifer. My family have now moved from London to Poulsbo. These are my reflections on random things.
A quick vignette. Flashback to our London life. I was on maternity leave for newborn Daisy and was dropping off Dylan at school. I didn’t drive at the time, I took the bus. 2 busses sometimes. Had the baby in the buggy and had to keep track of the baby bag, my purse, Dyl’s school bag and lunch and whatever coats, hats, gloves and scarves there were. I was tired. Mother with a newborn baby tired.
Ben asked if I could drop off a package at the post office. This was a reasonable request as it was on my journey path but I know my limitations and I honestly said I didn’t think I could be trusted to remember or keep track of one more thing. He really wanted the package sent off. He headed off to work, I loaded it onto the buggy. Made it to school, dropped Dyl off, settled him in, helped him write his name, hang up his coat et cetera. Caught the bus home. Got off the bus. Remembered the package. It was gone. I have no idea where it fell off. I called the bus depot. No luck. Said a prayer to St. Anthony. Of course I told Ben when he got home. It was a package with a faulty computer part inside. It was to go back to the manufacturer and a new part sent to us. I guess we just wrote off that part.
A few weeks later a package arrived on our door. It was from the manufacturer and it contained the missing part. A new part.
“There is no question whether an event has happened because of your prayer. When the event you prayed for occurs your prayer always contributed to it. When the opposite event occurs your prayer has never been ignored; it has been considered and refused,for your ultimate good and the good of the whole universe.”
- C.S. Lewis
I’ve been wanting someone to ask me how I am so I can tell them “I’m bouncing checks-running reds- reversing into cars- dropping phone in toilet- leaving back door open- leaving front door open- leaving car unlocked- fine.” I have been paying plenty of stupid tax.
Jung once said that the sole purpose of human existence is to kindle a light in the darkness of mere being.(TY Lawrence for the quote)
Are we kindling a light in the darkness of mere being?
To borrow words again – “I don’t for a second think that my job is ‘my job.’ Life’s interruptions are my job.”
But clearly, the lesson for me is to clear my mind and focus. One thing at a time. Multi tasking only works well to a point.
Dropped my phone in the toilet. Put it in a jar of rice which mostly saved it. It is operational.
A friend responded “Rice saved my phone, my marriage, my big toenail and 15% of my home insurance!”
Alright, alright. I don’t know about all that but it DID save my phone (mostly).
Ben randomly quotes NPR at me “Americans spend $330 million on Halloween outfits” he pauses for effect “on pets”. We had a pre-Halloween school event which all three kids were going to attend in costume. My total spend was $1.96 on makeup for Dyl. Ben’s response “What crazy lives we lead that we have enough clothes in our wardrobe to come up with costumes for an emo vampire, witch, and Minnie Mouse.”
I thought I was home and dry but I was mistaken. This was Halloween part 1. There was still actual Halloween and Daisy informed me she wanted a different costume for that. So back to the drawing board. Ladybug spotted red tights were bought, a sparkly red blazer and devil horns. Wallah, the devil had her costume. The emo vampire and Minnie Mouse remained status quo.
I insisted that the kids give half their Halloween candy to the hospice care center. Daisy wasn’t so sure about this. I said “Don’t you feel good that you did something nice?” She said, “I’m not sure. My heart and my brain aren’t talking to me.”
Not all Hospice stories have a happy ending.
“This was the will of God.” ”Things happen for a reason.” You can try again.”
No, no and Oh my God No. Don’t say any of those things please.
There really is no platitude or way to sugarcoat a parents’ loss of a child at any age. It goes against the natural order. However, the loss of a 1 month old infant, whether this was anticipated or not is especially difficult. The loss of a first born. The loss of the parents’ only child to date.
“On the night you were born, the moon shone with such wonder that the stars peeked in to see you and the night wind whispered ‘Life will never be the same.’”
(Enter stage right) parents Brittany and Jason. On first meeting you are taken aback by how pretty Brittany is. Unusual looks for this Viking town: olive skin, long dark hair, red lips and green eyes that draw you in. Striking, is a better adjective. She’s young too at 32 years old.
She says that she and Jason did everything ‘right.’ Worked on their careers (she a pharmacist and he in the Navy) got married, bought a house and waited for the magic age of 30 to try for a baby.
In January 2012 Brittany’s dad was 2 years into a cancer diagnosis and being cared for at Allegiance Hospice of Michigan where Jason’s mom happens to work as a Hospice nurse. That same month they discovered that Jason’s dad was also diagnosed with cancer (He died three months later at San Diego Hospice).
And finally, in January 2012, Brittany discovered that she was going to have a baby.
Being 30 years old and healthy with no history of genetic disorders on either side of the family she decided to forgo the genetic testing that was on offer.
At the 20 week ultrasound she discovered two things: she was to have a daughter and the daughter had a choroid plexus cyst. This particular cyst could be an indicator for Trisomy 18. Trisomy 18? What is that? Most people are familiar with Down Syndrome. Trisomy 18 is a variation on that theme: The 18th chromosome has three instead of the usual two chromosomes. They were told they had a one in ten chance of having a baby with this terminal illness. They were offered the chance to find out for sure via genetic testing done through amniocentesis. Brittany and Jason were given 20 minutes to decide. ”Although it wasn’t a situation that warranted laughter Jason and I were aware of how absurd it was for us to be given just 20 minutes to make this huge decision when we can’t make a decision on what to eat for dinner most nights.”
They decided against it. She was not going to terminate in either scenario, with amniocentesis there is a slight chance of losing the baby and finally there was the chance that Alivia would NOT have Trisomy 18.
Brittany was now considered a high risk pregnancy and her pre-natal care took place at Madigan which has a special unit. She describes driving to Madigan all the time for her scans and ultrasounds and check ups. Again, there was no big finding, no big ‘hurrah’ moment of either ‘You are safe’ or ‘Your baby has this illness’. However there were small indicators: slow weight gain, the previously noted cyst, a spot in the kidney. But no webbed fingers or toes and a perfect little beating heart.
As the pregnancy progressed they debated about whether to make a nursery or not. ”If I bring home a baby, I need to have a room to put her in.”
August 29, 2012 the c-section was scheduled. Jason’s mother (the hospice nurse) was over from Michigan and staying with them to help out. Brittany says “There was so much unknown for so long and today was the big day.”
They lifted Alivia out and Jason held her as Brittany waited to hear the first cry. Finally, it came. There was no pronouncement at that point but when they wheeled Alivia in the incubator past Brittany, she saw. She saw and she knew. Brittany describes her feelings as being so happy to see her baby but also so very sad.
The doctor called them into his office after they had taken Alivia to NICU and confirmed what Brittany had seen. Hospice was mentioned. ”I just had a baby and we are talking about hospice.”
A military chaplain offered to baptize Alivia and Jason also decided to get baptized with her. ”That was a real special moment that they both shared”, remembers Brittany.
Part of the condition of Trisomy 18 is that the brain is missing the part that automatically regulates breathing. She would forget to breathe. ”But funnily enough if she was being held she would remember to breathe. I was afraid to put her down.”
They decided no interventions. They decided they would leave the hospital and take her home. Alivia would get to see her nursery.
They knew she would die but did not know when. Brittany imagined Alivia would simply stop breathing one night and they would wake to find her.
That was not how it happened.
It took her nearly 24 hours to die. Gasping for breath, going for 2 or 3 minute stretches without breathing, turning blue, then reviving. Again and again and again. Fighting, ever fighting, two tiny fists punching the air.
She died in Jason’s arms.
I will start with something I read from a facebook page ‘Confessions of a Funeral Director’. He posed the question to his audience “What do you say to a bereaved person as a comforting statement if they or you are not religious? ‘ Nanu, Nanu?’ ‘ May the force be with you?’ ‘Live long and prosper?’ I think the general consensus was that whatever you say, if it is meant genuinely, will most likely be okay.
Recently I was asked the question of what to say (and what not to) by someone who has a friend who has recently become a patient on hospice. The person who asked it has been friends with this patient for a number of years, and is a sensitive, aware person herself, in hindsight, the very fact that she even asked the question shows a level of sensitivity so my initial reaction was A) pleased that she felt comfortable enough to talk to me and thought that I might have some way of helping her and B) befuddlement that she was even asking the question as I was pretty sure she was doing everything right anyway.
I talked it over with my husband and he asked whether I did any training of my volunteers on what to say and what not to say. Struggling for an answer, I realized I did not. (I have only put together one class I might add in my defense!) I suppose we cover the issues indirectly but not as bold as all that. I argued that it was intuitive what to say and what not to say. So he asked in all genuineness “So can you ask them, as a point of conversation, what their plans are?” “No, no!” I quickly responded, “And don’t talk to them about their illness unless they bring it up and… and..” I realized that this was an apple mac situation. What was intuitive for Steve Jobs is not necessarily intuitive for me and I sure am glad that the rules are written down somewhere for me to go and google.
So there are some points of guidance I have gathered from speaking to those clinicians at the ‘coal face’ and to a hospice widower who also happens to be a volunteer.
The widower (I’ll call him Glen because that is his name) recommended a movie. A documentary called ‘The End’ by Kirby R. Dick that follows the brief period of their life (before death) of 5 patients on hospice care in Los Angeles. Five different people and five different ways of approaching the end. So in relation to how you should talk to a patient on hospice care, Glen asked “What kind of person is she?” He describes his late wife as a ‘Home on the Range’ type of person ‘seldom is heard a discouraging word and the skies are not cloudy all day’. She was in total denial and you were not allowed to talk of the illness at all. You must remain positive at all times. In a way that made caregiving easy, you simply could not dwell on any sadness in her presence. However it also created a multitude of roadblocks to conversation. Her defenses were high.
Clinicians encounter those patients or the families of patients who believe there might be a miracle out there for them “We are still praying for our miracle.” “I am not here to take your hope away. Hopelessville is a lousy address. I am not saying that your miracle will not be answered but I don’t know whether it will be here or in heaven.”
Help them figure out what they are worried about. Be led by them. The ear to mouth ratio is double so do more listening.
Don’t say “I know how you feel” or “ I will pray you out of this.”
Don’t say “Call me anytime you need me” Show up to do something specific “I am here to vacuum your house” or “I’m here to make you laugh, remember when…?” Don’t forget to laugh. They just want to feel normal again and forget for a little while that they are sick. It is okay to put deeper issues on the shelf. They can choose when to take that book off the shelf.
Don’t shout about your good news. Don’t ask or talk about plans too far in advance, theirs or yours. Don’t discuss the illness.
If you feel like crying uncontrollably, that is not the right time to visit. They are not there to comfort you. Choose a time when you are feeling stronger. But by all means, keep visiting.
So Daisy tells me that she is now ‘too big’ to be taking a Peppa Pig lunchbox to school.
She is in Kindergarten stateside and has owned the lunchbox for three years. Back in England they start pre-school part time at age three and a half. I don’t have strong memories of going to buy the lunchbox and in fact, I am now remembering that she didn’t even eat lunch at school, being a morning bird, part time. I must have got it for her to eat her lunch at the childminder’s who picked her up at noon. But regardless, she loved that lunchbox.
We were always losing it, I was on public transport at the time and it often got left on the bus. When you are traveling around with so many children, with so many things each (school bag, lunch box, hat, gloves, scarves, coat, whatever else) times several changes on a bus to get to a destination, the chances for losing things grows exponentially. Obviously you do your best not to lose things, and to instill in the children these lessons; try to fit all of your stuff in one bag and therefore only have to carry and be responsible for one bag; Don’t take your bag off your back on the bus or at least have it looped around your leg or something so it is impossible to just leave it behind. Always look around you and ask yourself the question ‘Have I got everything?’ But despite all this, we still lost a fair number of things. I thought of it as acceptable collateral damage. But I would make special efforts to recover the prized lunchbox. I had the number of the different bus companies saved on my phone; I knew where the lost and found for the bus depot was; Once I stopped a bus full of passengers (I thought) I had been on earlier and asked the bus driver if I could have a look for the lunchbox. He stopped and let me on and I inspected the seats like I was on official business. There was nothing. I said ‘Thank you’ apologized to the passengers who were now running late due to my interruption and set them back on their merry way. I can’t believe the driver stopped and let me do that. He must have seen my desperation.
Once on the phone I made contact with the bus company and a driver asked me what was in the lunchbox so he would be able to properly identify it:
“Peanut butter and jam but I expect it was eaten by my daughter earlier”
“Oh that’s a shame, I was feeling hungry.”
That driver later dropped off the lunchbox at my work when he got off work. At that point, I was getting the lost lunchbox delivered to me!
So it’s the end of an era with that lunchbox. Luckily I have someone waiting in the wings to inherit it.
This is Just to Say – William Carlos Williams
I have eaten
that were in the icebox
And which you were probably
they were delicious
and so cold
When I was working as a waitress in a cocktail bar (that much is true), I was a spare roommate to a bunch of American girls that were a group of friends who had travelled from wherever they were from to live and work in London for a short while. They needed someone else and I answered an ad that was a piece of paper pinned to a cork board in the hostel. We weren’t friends, we lived together. They all worked in a pub and I worked all hours under the sun in the aforementioned restaurant/bar and that made me a different kind of animal to them. And vice versa.
If you have ever worked in catering, you know how full on the work can be, with no break and how friggin’ ravenous you can get. You beg stuff off the guys in the kitchen and if they like you they will give you something for free. Anyway, I must have had bad luck with the kitchen guys one night and I got ‘home’ late. Everyone else was either asleep or out. We all shared a room. One big room with different beds. Someone had made dinner and left a bowl of bow tie pasta out in this amazing sauce covered with saran wrap on the counter. There was a note: Do Not Eat. This is for my lunch.
Being that I worked all the time, there was no time to shop, I had no food left of mine in the house, it was too late to get anything from takeaway or I was too tired to try. I thought “Just one taste” I fished some pasta out from under the wrap. “Just one more and then I’ll stop” But no did I stop? I ate the whole goddamn thing. And then I had to go to bed knowing there would be reprisals in the morning and I would have to ‘fess up.
This is the kind of person you are dealing with. But you already like me, so it’s too late now.
Ralph Waldo Emerson described volunteers as ‘They who scatter joy.’
One of the Hospice volunteer’s is a disabled nurse named Bobbie Price. I am not sure exactly how she came to be disabled but her ability to walk is limited, she uses a walker and needs to rest her leg on a box when she sits down. Her job is to call all the patients and make sure they have enough meds to last the weekend. She sometimes gets into conversations with the lonely. If she is able to answer questions or troubleshoot problems with her nursing knowledge she does; otherwise she can refer to someone else in the agency. It takes her an hour to get to the office via the Dial-a-Ride assisted transport bus and an hour to get home again. Sometimes she is carsick from the journey, sometimes she comes in and the computers aren’t working well, or the list of patients hasn’t been updated. Our heating is broken so it’s cold, and mind the front door to our building doesn’t slam when you walk in because the air pressure on that is malfunctioning too.
I was walking down the hall and she called out to me from the office she was working from “You know how I feel every time I come here?”
I mentally braced myself for a complaint: Was her computer not working? Was her phone sounding fuzzy? Was it something I was even going to be able to fix?
“I feel such JOY.” “I am so happy to be able to do some nursing again. A nurse was all I ever wanted to be since I was 4 and then I became one and had to stop because of my accident. But I get to do it again here. I was sitting here in a moment of pure happiness, I had to share and waft some over to you.”
Received, over and out, thank you for scattering joy.
Me: “How are you?”
Ruby: “Doris says I’m fine.”
A story from my volunteer Ruby. Her brother in law Frank, used to answer honestly and descriptively when people asked how he was. His wife admonished him saying “They don’t want to hear your troubles, aches and pains! Just tell whomever is asking that you are fine!” From then on his response to “How are you?” became “Doris says I’m fine.”
Sundays are turning out to be my worst days. The stacking up of jobs to accomplish at ‘the weekend’, or ’le weekend’ if you are French, is horrific and the stress of trying to tick off those boxes and the disappointment when I am unable is fairly untenable. However I need to go into the working week with a certain amount of preparedness in order to do well. The tightrope balancing act.
Family time. I wrote a Facebook post expressing my disbelief that two parents would attend a child’s activity. There is always so much to be done surely one parent could be set free? The responses that came back were otherwise. There was talk of family time. I begin to re evaluate when we have family time. I ask the 6 year old Daisy how we are doing on family time: “Not good at all” is her reply. I mention that we eat meals together “That doesn’t count” she says. Due to the age differences of our kids (22,11, 6 and 2) and perhaps our own personalities and lifestyle – we have a history of splitting up to get things done.
Camping. All the work with less facilities. Does that sound like sour grapes?
Some good pieces of advice lately:
From Tama J Kieves: Today I practice receiving. I do not reject any conversation, cancellation, disturbance or shift in my plans. I pay attention to a higher love seeded in every encounter. I behold metaphors, transmissions and messengers of every kind. Everything comes alive in my presence as I am present to being alive.’
My interpretation: Let conversations happen to you.
And situations happen to enable you
to remove your ego.
‘Every situation created by the Master is a gift of grace meant to remove your ego.’
Yesterday I accompanied my son Dylan on a field trip to a ‘Young Writers Conference’. I was in charge of 16 eleven year old 5th graders from 3 different schools. I had to help them navigate across the Olympic College campus to different rooms to listen to presenters, lead a session on sharing their writing with each other, and keep them on task during a session when they were meant to do some creative writing.
One of the lead teacher/organizers had the same last name as a girl in my group. Although I had no previous knowledge of this, due to the uncommon last name, I took it that they were mother and daughter although the daughter was as Korean looking as the mother was blonde Caucasian. My inkling thought was confirmed when the teacher mentioned to me that her daughter had been in my group. Dylan and I were talking about the girl at one point and I mentioned that I think she must have been adopted. Dylan confirmed this – they were in class together last year and he’d commented to her that she didn’t look like her mother. “I’m adopted, that’s why I’m not tall like her.”
Like height, or lack of it, was the tell tale sign. The innocence of that, grabs me.
One of the speakers was children’s book author and illustrator Dana J Sullivan. He started off his session by passing out plain paper to his child audience with the explanation of “You are all here because you like writing. I hope this also means that you like drawing. I know that if your are ‘one of those’ you concentrate better if you are allowed to doodle while you listen.”
Now this brings me to another memory. Back when I worked at the Heritage Lottery Fund there was a formidable pair of eccentrics roaming the floors of the building. There was Michael the ‘Expert on old buildings and Whatnot’ and his assistant, Andrew the Self-Harmer. Andrew would call in to work saying he had made it to the train station but couldn’t come in to work as he felt a bout of self harming coming on. This was a completely acceptable reason to the powers that be not to come in, until it wasn’t. Michael was artsy, odd, sharp and sarcastic but meant to be an expert in his field. I remember the distraction of him doodling during board meetings where we were all sat around a massive french polished table. He made no effort to hide his doodling and he was so loud with it, like a 3 year old scribbling with a crayon.
But I digress. Dana asked the audience of mainly 5th graders with a few scattered adults whether they still enjoyed drawing. There was a resounding ‘Yes’ from the majority. He said that was great as children tend to drop off from drawing in the 4th and 5th grade as they begin to get critical of their own work and worry that ‘it isn’t good enough.’ He asked the adults if they still like to draw. ‘No’ was the answer from most of them and was certainly my answer which the little red haired girl I was sitting next to was so surprised to hear that she looked at me with a shocked, incredulous “Really?” “I had a traumatic experience” was my response. ”Oh” she said and returned to passing notes to her friend.
My traumatic experience. I guess my interest in drawing or coloring tapered off way before 4th or 5th grade. Art was a subject we were graded on in First grade and it was my first ‘C’. My parents were not pushy parents by any means but I was an eager to please child and I remember the disappointment of the C grade.
Another memory – In Guam I took the school bus home on my own. I was aged 7 and I got on the wrong bus and ended up getting home way later than usual. My parents were worried and I got in trouble when I finally made it home. I remember sobbing saying to them “But my report card was good!” My personal feelings were that good grades should have bought me immunity from any retribution from my other actions.
My parents didn’t buy it.