Tuesday, June 23, 2009

Marriage in the Pressure Cooker

I have been thinking about marriage. Since our marriage is now in its 18th year, it is different from a new marriage. Living in the aftermath of Katie’s cancer and her passing, the marriage has changed and weathered a great deal.

It seems to me that in marriage, there is me, and there is you, and then there is “us.” Me plus you equals “us,” and me plus you plus our children equals another “us;” in our case, “the four of us,” and now, after Katie's passing, “the three of us.”

From what I’ve observed, some couples never move from "me" and "you" to become “us.” While lots of people can rub along just fine this way, when enormous stress or life-shattering events occur, it’s very helpful to have “us” as a place of refuge.

When we moved into Ronald McDonald House (RMcDH) to be near Children’s Hospital, we moved from a 3-bedroom, 2.5 bath home into a one-room, one-bath space. We shared a communal kitchen & pantry, living room, computer room, etc. with other families. David, Katie, Gregg & I all slept in the same room, the room where we also lounged, watched TV, used our computer, prepared and administered medication and got dressed. We could hear each other’s breathing in the night; we could hear when someone got up to use the bathroom. We could also hear other families walking down the hallway.

For the most part, the families we met were surprisingly happy, considering the circumstances we were all facing. All of the families were at RMcDH because one of their children had a life-threatening illness, and usually it was cancer. Most of us had given up the comforts of home; siblings had either left their regular school& moved to a new one near the hospital, or stayed where they were, which involved splitting up the family. Some parents had given up their jobs in order to be available as full-time caregiver to the patient; for those families, this meant a big disruption in income, and sometimes, financial & insurance worries. All of us were unsure of how (and when) this situation was going to end. We were together in a land of uncertainty, all in the same wagon, doing the best that we could for our families.

I remember a night when, in the wee hours, Katie woke up and found that her feeding tube had leaked formula into her bed. She awakened Gregg & me, and we changed her sheets (David slept through it, lights and all). As we were putting the fresh sheets on her bed, I heard screaming and swearing in the hallway outside of our door. I also heard banging and crashing sounds. I went to the door and peeked through the peephole, but couldn’t see anything. A few seconds later, a flash of bare fanny crossed my field of vision: the back of a person who was running down the hall, clutching what looked like a bedspread. My immediate thought was, “Oh, that poor lady. The stress has got to her, and she has cracked; totally understandable.” In other words, I assumed she was one of the residents of the House, the parent of a critically sick child, like us.

The next day, we learned that she was, in fact, a lady who had a mental illness & lived nearby, who was mistakenly let into RMcDH by a newly-hired security guard. She tore several of the handmade art quilts off of the walls and broke some of the furniture in the common area before she was stopped. I felt compassion for her, but the part that struck me funny later was that I thought her behavior was perfectly reasonable, under the circumstances. I thought she was one of us!

During that time of unprecedented stress, we grew in compassion toward ourselves and others. You couldn’t help it; your heart just opened as you witnessed the suffering of your fellow beings. We didn’t turn into saints, but we did grow. It’s not just about me getting what I want; that’s finished, in one sense, forever. I didn’t get what I wanted, and in this case, I never will; I will never get to see or hold Katie again, until I die. Learning to accept that is an ongoing process, & it is maturing my heart.

There are statistics that people often quote about the breaking up of families after the death of a child (and other life-altering events). I can understand why families fall apart, just as I can easily see why people engage in over-eating, gambling, drinking, affairs, over-work…anything that can numb the senses is understandable, when the pain is so debilitating and consuming that you want to do anything to make it stop. But of course, those behaviors do not stop the pain; it is still waiting for us, when we have finished distracting ourselves, and perhaps such behavior has even added damage to the situation.

However, it can play out another way: stress can forge greater strength in a family. It can bring out better qualities than we knew we had. We suffered, we disagreed, we were fatigued, we misunderstood, we fell short…but we did our best under the circumstances, for Katie and for one another. We laugh at ourselves, and at life, more freely now. We have more empathy for others; we talk more. We give more leeway, more “benefit of the doubt” to one another. Gregg, David, Katie and I are now “us,” more profoundly than ever, as are Gregg, David and I, as are Gregg & I. Our bonds were forged & became stronger in the furnace of adversity. That is one blessing for which to be thankful, in the midst of this pain and unspeakable loss.


You can also find this posting over at Hopeful Parents.

Thursday, June 18, 2009

Taking a Break

Dear Blog Friends,

I am going to take a break from the computer (email / caringbridge / facebook / blogs) for a bit. Everything is okay; no need to worry about me.
I will be posting here & over at Hopeful Parents later this month, but otherwise, it will be quiet here. I will think of all of you and, of course, I'll be writing in my head!

Right now, it's time to focus my attention on my family as the summer begins. See you soon.

Sending love and blessings to you!

Monday, June 15, 2009

Relay for Life - Inspiration from Shannon

Our friends, the McRae family, go way back with us. Gregg knew Dave (the dad) in high school and college, and they were roommates after college. They took trips together, went boating & sailing, and shared a lot of laughs. Dave & his wife, Cary, are responsible for introducing me to Gregg.

In 1989, I was working in banking (public finance) with Dave, who had just married Cary (Gregg was in their wedding). Cary and Dave held an Oktoberfest party at their house, and they invited a group of friends, old and new. It was my first party as a "single woman," since I was going through a divorce at the time. My soon-to-be-ex had walked out, filed for divorce, and was moving to California, so I was on my own. Dave thought I might like to meet some of their friends, so he invited me to join in the fun.

At this time, I was renting a guest house from a family (they had four kids), living behind their beautiful, waterfront home. As a party guest of Dave & Cary's, I brought a crate of freshly-picked apples that I had bought from a farm near my home (and chips and dip, from the store). When I arrived, about an hour after the time the party was to commence, Gregg was the only other guest in attendance...yet. I remember being taken in by his large, clear, beautiful blue eyes, especially as they were offset by his dark hair & green shirt. I noticed how short (conservative?) his haircut was, too. My soon-to-be-ex was an actor, an artist, and a horseman...he had long hair and an earring. Hmmm: quite a contrast.

When my ex left our marriage, I made a promise to myself: the next guy I date is going to understand why I live where I do (in the country, by the water), isn't going to get me away from here, and is going to have to love the outdoors. At the party, Gregg asked me, "Where did you buy those apples?" I told him that they came from a farm near my home, in a place called Lemolo. He asked me, "Do you mean the old Johnson farm?" and I said, "Well, it was on Johnson Way," so he told me that he knew exactly where I bought the apples, because he grew up less than a mile from there. He lived a few miles from me; he had recently moved back from the city. Interesting...
Things started to get more interesting in the kitchen, as I was mixing the dip. Gregg was with me, and a bee got into the house. I was allergic to bees when I was a child, and I still steer clear of them. Gregg was trying to catch the bee...and I immediately questioned his ability to do it successfully. I watched for a moment, and then said, "Well, if you're going to try to kill it, be sure you DO, because if you miss, he'll be mad, and he'll come after us." I recall that he didn't say a word to me, but did I see the tiniest, pitying glance? I'm not sure, but he killed the bee easily and cleanly.

Gregg seemed to be everywhere that I was, during the Oktoberfest; I was mingling, moving from room to room, and he seemed to appear, silently (as if by magic), next to me. He asked me for my phone number, and I gave him my business card...with my work number, not my home phone. This was in the days before everyone had a cell phone!

The next morning, as I was washing my hair in the shower, I winced as I remembered the scene in the kitchen. Did I really have to tell that guy how to deal with the bee? What was his name again? Was I turning into a woman who didn't trust men? It kind of looked that way.

Gregg called me a few days later, asked me out, and we went on a date...and then another. Various "ups and downs" followed - mostly ups. A year and a half later, we were married, with Dave McRae as one of our ushers. They loaned us the family condo and car for our honeymoon on Maui.

Fast forward...Dave and Cary now have three daughters. They are a happy family, with Cary working part-time at the girls' private school. Cary was diagnosed with cancer shortly after Katie received her diagnosis, but fortunately, after treatment, Cary's cancer went into remission. Unfortunately, last spring, the cancer returned, and she passed away in the summer; I wrote about it here and here. We were all heartbroken for her family; they are brave, strong and very close. Cary would be proud of them. [You can read about Cary, and see photos on her caringbridge site.]

Dave and Cary's middle daughter, Shannon, sent me a note and a photo recently. I have her permission to post them here:
"My school team had our 3rd year of relay and every year I'm the captain. You might like to hear that Katie was well represented in the central Seattle Relay for Life just about every year... The team name is Cary's Angels. I've been the team captain for Cary's Angels for 3 years. This year, we had the biggest team of 50 middle school girls and we won the most inspirational award and got second place for fundraising at $4,094.34. We had many Cary McRae luminaria and also a few Katie Gerstenberger luminaria from the McRaes."
This photo shows Katie's luminary in the center, along with Cary's.
A long relationship, with many happy memories (and some sad), brought about this great kindness, generosity and caring among some motiviated middle school girls. Thank you, Shannon, for remembering Katie and for honoring her, alongside your mother. We appreciate what you and your team are doing to raise awareness and funding to find cures for cancer!

Simple Pleasures

I love simple pleasures...a walk, a nap, a fresh salad filled with home-grown lettuce, a bit of quiet time, and time spent with loved ones.

This weekend, we enjoyed all of those things.
Liger demonstrates a nap (under a rose bush, in the dirt, for some reason):











David and Latte, spending time together (look at those BLUE eyes):
a salad filled with good things, grown in my parents' garden (including edible flowers, one of my favorite ingredients):

my parents.

I had the pleasure of taking walks & a nap with Gregg, playing catch with David, having my parents over for dinner, worshiping with friends at Mass, and visiting with them afterward, over coffee.
I received the wonderful news of a new friend's spontaneous remission from cancer, celebrated a graduation with family and friends, and enjoyed the sunshine & the view from our deck.
I hope you had a good weekend, too.

Friday, June 12, 2009

Dear Wrigley...

Dear Wrigley,
This is our neighbor, Louie. He is a Golden Boy, like you.

He & his Jack Russell brother, Buddy, love swimming, and chasing sticks & tennis balls, especially if there are kids to play with.
They have had a lot of fun with David & Katie over the years.

Maybe you could come over for a visit, and he could show you a thing or two about how much fun it is to go swimming in the Sound...then you could run, swim & chase tennis balls with him & Buddy...and David.

Love from your pals,

Latte & Liger
P.S. We like to ride in boats, too, but we don't have a life-jacket like yours, you lucky dog!

The End of the School Year

This time of year is bringing mixed emotions with it.

Next Wednesday is the last day of the school year. David will be finishing his junior year of high school, and will officially become a senior on Wednesday.

Katie would have been graduating from middle school, and moving up, with her classmates, to join David at the high school. She would be starting 9th grade, when her brother starts 12th.

Her friends are graduating from middle school, but she isn't here to experience it with them. I would have been involved somehow, but I'm not.

I am thrilled for her classmates, but sad for Katie and for us. It's a jumble of emotions.

David has a good summer planned, since he now has a job with Argosy Cruises, working at their Tillicum Village site on a nearby island. His "commute" involves 4 boat rides to & from work; not bad for a summer job! We are very proud of him. He has worked hard in school, taking three AP classes and a challenging math class, and has kept his grades up to "the family standard" (with one exception, which we won't go into here - it's complicated, & not my story to tell. Ggrrr).

I have been working on quilts, fundraising ideas for Seattle Children's Hospital and writing. I haven't said a lot about the fundraising ideas here, as the outcome is yet to be seen. I will say that I had a lovely meeting with the president of Seattle Children's Hospital Foundation and the president of the Guild Association, and they listened to what I had to say, borrowed my notebook and have followed up twice with me. I believe it was more than just "polite interest," but we shall see. I want so much to help them raise funds and get lots of homemade quilts for the benefit of their patients. I am trying to let God lead, and to remember that He is the Spirit that moves within all of us and our desires to bless. I want HIS LOVE to be done (as in, "Thy will be done"), in His way. Please, feel free to pray with me!

I think back to the wonderful summers that we spent here as a four-some. The kids had lots of time to enjoy the beach, the woods, the warm weather, the cold water, each other, their friends & summertime freedom.
We would make picnics and go places for the day; the children would have lessons in warm-weather sports, music and/or acting. We would catch crabs with Kappa & Grandma and eat them on their deck. The children would pick vegetables & berries out of Kappa's garden and eat them, still warm from the sun.
We ate many dinners on our deck, and watched the boats going by; we walked the docks of our town's marina & ate in our favorite restaurants together.
We stayed up later, since the sun sets later in summer.
It was great fun all around.
I love my job as a full-time homemaker, sharing in the rhythm of our children's days.

I hope the end of the school year brings happiness in your household, and that summer begins with great promise of joy for you and your family.

Wednesday, June 10, 2009

Some Notes & A Poem

Yesterday, I was going through some things in my nightstand, and I found a few pages from a notebook that I had with me at the hospital, when Katie was first admitted. They are notes about what we needed to get from home, who was coming to visit, who we needed to call, what the ICU rules were, who had sent cards/gifts, etc. This was very early in our cancer journey...the first week. I had also made a note about something that Katie said at the time.

I don't know if I've adequately described how funny she was. She was very frightened, as we all were, but she was also very, very strong, sparky & feisty in a feminine, pre-teen way. This is what she said to me, at one point during her first days with the knowledge that she had cancer: "I could die. This could affect your chances for grandchildren. Don't let that get around."

Obviously, I'm now letting it "get around." I want you to know how bright she was, how she thought, and how different the world was, with her in it.

My brother and sister-in-law just had their wedding video transferred to a DVD. He was describing it to me over the phone, and saying how he felt when he watched it. That brought up memories within me. Jim & Caroline got married a couple of months before I became pregnant with Katie. When he was talking about the DVD, I thought, We didn't even know Katie then; we didn't know what we were missing. We were happy, before we knew her. Yet, we were much happier after she was born into our family (just as we were happier after David was born, than we were before we knew him). Now, Katie is gone...and we know what we are missing.

I'm glad that I kept those notes.

Some time ago, I met a creative, energetic and funny woman (through CaringBridge) named Heide Randall. She lives on the other side of the country. Her beautiful, talented daughter, Jessica (www.caringbridge.org/visit/jessicarandall) died of a brain tumor. Heide is very active in raising awareness about pediatric cancer, and she posted this poem on Jessica's site yesterday:

I know your names
You were here for hours, days, months or years
Too young to die
Too young to leave your parents, who will never be the same
Your names are written on their lives forever
They will remember your birthdays, with "if only" and "would have been"
They will count the years and measure you by your friends
They will mourn your graduations, ball games and marriages
They will hold you in their dreams
They will cradle your teddies and sleep with your blankets
They yearn for the scent of you, long gone from your clothes
They will walk into your darkened rooms and hope that tonight you will be there
They fear they may forget your faces, your smiles, your voices
They hold onto the grief that binds their love to you
They will remember the insidious unknowns that stole your breath, stopped your beating hearts
They will relive your last days, last touches, and last breaths
And rewind them again and again until they are tight in their mind’s eyes
I weep for your mothers, your fathers, your grandparents, your siblings, your friends
And all those who will never know you
And when time silences the voice of solace
I will say your names and remember
-Author Unknown

That describes this journey pretty accurately. Thank you for posting it, Heide.


I'm over at Hopeful Parents today.

Tuesday, June 9, 2009

Relay For Life

A number of our friends are participating in the American Cancer Society's Relay For Life across the country. It's customary to decorate luminarias to honor, or in memory of, a loved one who is your inspiration for participating. A couple of friends have put Katie's name on their luminarias, and I can't put into words how moved I was when I first learned about this.

One dear mom, Ann Vossekuil, included a whole group of kids who have passed away when she made luminarias to honor her daughter, Taylor (www.caringbridge.org/visit/taylorvossekuil). I met Ann through CaringBridge, and we have corresponded for a while. We live half a country away from each other, have never seen each other in the flesh, but here is what Ann has done:

Isn't that a lovely gift and memorial?

Love is a powerful thing.

Monday, June 8, 2009

Beachcombing

Gregg & I took a beach walk on Saturday morning.

We walked a long way, towards our town. It was a lovely, quiet time together.

We found all kinds of great stuff on the beach: an old green wine bottle that is half-covered with barnacles, beach glass, shells, part of a rake, a basketball, a float, driftwood and an old oar, among other things. Gregg carried the oar back, and he (the guy who usually detests house projects and craft projects) made a fabulous sign for us using the oar, a piece of driftwood & beautiful brass numbers. Isn't he clever?

We also had two staffers from Camp Goodtimes over for a visit. "Pineapple" & "Watermelon" came to pick up a few donations for camp. We gave them two bicycles, a large box of costumes/dress-up clothes, and a LOT of beach-craft-art supplies. It felt so good to share what we have, and to know that it's all going to Camp Goodtimes. Though it was hard for me to go through her things, I believe that Katie would like knowing that her dress-up clothes are going to bring joy & fun to kids at camp.

The weather was beautiful here today. I cleaned house, exercised, wrote & did some brainstorming for the hospital. I'm full of fresh barbecued halibut, and tired from working. It feels good.

Wise? Perhaps Not

One of the facts of life about being a writer (it feels very presumptuous to call myself that, but there it is, in black & white) is the amount of time that I spend alone, in my own head. I love to spend time this way, but it has a few drawbacks:
1. I think...a lot.
2. I become a bit self-absorbed.
3. I think I am right, perhaps more right than I actually am, because I'm spending so much time in a world populated by people who think as I do (me, myself & I).
4. I think my ideas have more importance than they really do.
5. Writing a blog and receiving kind comments can certainly swell a person's head.

These have the potential to damage perspective, and possibly even relationships, wouldn't you agree? (See, there I go, thinking I'm right.)

When you dear readers write nice things here, it makes my day sweeter. But I also take those kind words with a grain of salt, because you dear people do not have to LIVE with me. My husband and son, my parents and closest friends, those are the people who know all of the darkness and neuroses that lurk deep within this loving heart of mine, right alongside my good qualities. I know we all have dark places within us, but still...

I am not very wise.
I have some crazy ideas, many faults and plenty of obsessive thoughts.
I should not write a parenting book, but you are kind to suggest it.

I thought for years that I was a sub-standard parent, because I did not enjoy breastfeeding, diaper changing, children's games and picking up after little people. I did not join a mom's group; in fact, that was the sort of group that I wanted most to avoid when my kids were little, because I wanted some other kinds of input at that time. I wanted to stretch & use my mind, which was the main thing for which I have received praise during my life. I didn't want to talk about binkies and blankies, and who was teething, etc. I wanted to talk about legal issues, business issues, art, travel, and anything else but babies.

Nowadays, I love babies, and could sit quietly for a long while, just holding and rocking a baby or listening to other moms talk about their kids. Now I know how creative homemaking can be. But back then, I didn't know, and it was difficult. I was restless, and wasn't feeling complete within myself, so I thought that meant that I was lacking in maternal instinct. Now, I know this is not true. I learned from being with Katie and my family through her cancer journey that I am, in fact, a good mother...a much better mother (and woman) than I ever thought I was.

It was the adversity, the suffering, the strain, the pain and heartaches that taught me who I am. It wasn't through pleasure and getting my way; it was through endurance, and even that was not through my own goodness; it was God's loving grace in giving me strength for the moment, each moment. He formed me as the demands grew; he stregthened me, mothered me, walked beside me, gave me who and what I needed to do the job at hand.

Lately, I've been nostalgic for our days in the hospital and Ronald McDonald House. I miss those days only because I miss Katie so much, and that time looks rosy compared to these days without her. Living without Katie hurts. But I realized, this weekend, that I am looking at this with hindsight. During the hospital stays and the weeks in between, we were all suffering greatly, and no one was suffering more than Katie. We were putting her through hell to try to save her life, with the only tools at our disposal. But it was HELL, and I would NEVER wish for her to be back in that bed, with IVs running into her arm, delivering poison into her system. I would never want her to be living again with the anticipation of her own death, watching her body disintegrate from the inside out. NEVER.

Perhaps I should write a book about grief, or cancer, or living with a child who has a terminal illness, or life after your beloved child dies. Those are possibilities, and I would love to do something like that. But I am not any wiser than you are. I have simply lived some experiences that perhaps you haven't...but you have lived some experiences that I haven't, and you undoubtedly have some unique wisdom of your own, that I don't have.

On Saturday, I accidentally drank some tea with caffeine after dinner, and I lay awake after Gregg went to sleep, worrying. I was thinking, I can't believe I'm sending "my baby" to work at a job tomorrow! What was I thinking? He's only 16; he only has one childhood! Why did I feel so strongly about him needing this now? Then I went on to other worries, but each time I did, I tried to give the worry to God. I said to God, "Please help me; I'm yours. I can't do this on my own. Help me to listen. Help me to do what You want me to do. Show me, clearly. Please help me." I kept letting go, and I kept worrying, letting go & worrying. Eventually, I got some sleep.

David went off to learn his new job on the 7:05 a.m. ferry. He arrived in Seattle, walked to the Argosy pier, boarded the Argosy boat and rode over to his job at Blake Island. He worked harder than he has ever worked in his life, raking, sweeping, mopping, washing dishes (by hand and using a commercial dishwasher), helping to refill the dinner buffet, hauling firewood, greeting guests and serving fresh steamed clams to them. He met new people; he loved it! He is proud of himself, and we are proud of him. It's going to be fine.

No, I'm not very wise, but you are kind to say so. Thank you so much for reading and commenting kindly here.

Tuesday, June 2, 2009

David Got a Job!

David has been offered a summer job with Argosy Cruises! I can't quite put into words how happy I am about this.
I have been praying, "Thy will be done" while waiting for the answer, after his interview!

Argosy is a great company. They donate two cruises every summer to Camp Goodtimes, and that is just part of their generosity. If you go to their website, you can read about their corporate culture and history; it's interesting, and their values are excellent. We had the pleasure of meeting the owners at the Camp Goodtimes benefit in March, and they are a kind, caring and sincere couple.

It's so important to learn about the working world when we are young. David has been exposed to many wonderful, beautiful "things" (and experiences) of this world, and it is vital that he experience what it costs to earn the money for them. I think we choose differently, once we realize how many hours of our time will be needed to purchase an item that we desire. I keep telling him, You will pay for what you buy with your time, which is really your life. That's why it's so essential to listen deeply about what you are called to do. I didn't learn this in my education; I'm still working on it, and I want David to know better than I did.

Working for money raises a lot of conflicting feelings within me, because of my background and temperament. I worked for my dad's company when I was David's age, and during vacations from college; I worked there again later, after I was married. It's different to apply for a job with your dad, than it is with strangers. We were given mixed messages at home regarding women in the workforce. This was 30+ years ago, and the women in my family did not work for money; I did not expect to need to work for money, but it turned out to be necessary. I had a lot of anxiety around that, applying for my first job after graduating from college. I made a poor choice (the job was a terrible fit for me), and then I repeated that cycle many, many times, eventually finding work that I liked - but never work that I loved - until I became a full-time homemaker, nine years ago.
I WASN'T PREPARED.

This is one of the things that I want to be different for David: I want him to be prepared, to expect to work, and to be so accustomed to seeking, getting and having a job, that he doesn't worry about it. But I also want him to love what he chooses to do, so that his life will be fulfilling. Having a lot of money isn't so important when you are happy with your daily life.

You can see that I may be projecting some of my unfinished business onto him; I can see it, too, and I told him openly that this might be the case. It doesn't mean that this is a bad idea for him. We just need to be clear about our boundaries: what is my inner work, and what is his work, are not necessarily the same.

Today, I am truly, deeply thankful for this opportunity for David to join a wonderful company, and give them his time and energy, as they teach him valuable lessons.
Above is a photo of an Argosy "Christmas Ship," on which we cruised in December, 2007.

Sunday, May 31, 2009

A Visit with Dr. Tom

We recently had a visit from one of our favorite doctors from Seattle Children's Hospital. He brought his family with him, and it was lovely to have them as guests in our home.

I've spoken about this man before. He took care of Katie, as her attending physician, in the ICU, when she was first admitted to the hospital (with the enormous abdominal tumor, that had given no signs of its presence until it was threatening her life). Because of the tumor's location, it was determined that Katie should have her first round of chemotherapy in the ICU, where she was hooked up to several monitors all of the time, and had a nurse dedicated solely to her care. That is, a ratio of one nurse to each patient.

The ICU is not designed to administer chemotherapy; therefore, the Hematology-Oncology department sent their own nurses up to handle the drugs, and to administer each dose to Katie. The equipment is all very high-tech, but the care is personal, and the best imaginable.

When Katie was moved to the ICU, we were marveling at the size of the room that she had, all to herself, without a roommate, and the windows, view, etc. Her response was, "It's a little too high-tech for me." This is a photo from that time, before the chemo made her hair fall out.

The ICU staff make you feel that, though they have the medical expertise, you are the expert on the subject of your child. Dr. Tom is the doctor who helped me learn what rounds are, and made me feel welcome to participate in the process of reporting on Katie's condition every single morning. I loved being part of her team, and Dr. Tom treated all four of us with respect, care, humor, compassion and calmness that became the tone for the entire ward. He never wore his white lab coat; he always wore a shirt & tie, with a pullover or cardigan sweater over it. He has a quick & witty sense of humor, which bonded him with us right away. He & David immediately developed a great rapport, which continues to this day. Dr. Tom and his family hosted David on several ski outings this winter, which David loved. With Dr. Tom's sons, they have also played what is now known as "the greatest game of tag, ever." On this visit, David and the boys even enticed Tom up to ride on our rope swing.

One of the most important memories I have of being in the hospital with Katie centers around Dr. Tom. In the beginning, we continually heard "Katie could die at any moment." Since the tumor had already entered her heart, she was experiencing an irregular heartbeat rhythm that was being closely monitored. The tumor was considered "friable" (flaky and unstable), so there was constant concern that a piece of it could break off at any time, travel swiftly to her heart or lungs, and kill her, instantly. Spots had also been detected in her lungs, indicating the possibility that there were small tumors present, which could also kill her. And they were administering chemotherapy to her, which is itself composed of different kinds of poison, designed to kill cancer cells - but having the side effect of killing all fast-growing cells in the body. She was in a very dangerous situation.

Trying to care for her without alarming her, when I myself was really and truly shocked and terrified, was taking a toll on me. I didn't want to leave her at all, but we were not allowed to eat in the ICU. I would go to the break room and have graham crackers and tea, but wasn't going out to exercise or eat unless someone else from the family was with her. I was sleeping with her in the ICU at night. They gave us a pager, so that they could reach us at any time we might have to leave the unit. Even going to the bathroom was stressful, because I had to leave Katie to do it.

One day, during rounds, Dr. Tom & the team asked me if I was getting out at all, getting exercise, etc. I looked at them with tears welling in my eyes, and said, "I don't think you realize what they've told us. She could die AT ANY MOMENT, and I don't want that moment to come, and have her look around for her mother, and I'm at STARBUCKS getting a COFFEE." There was a silence, which felt sacred, to me. Just peace and compassion, filling the space around us. Then Dr. Tom said, very gently & quietly, "I don't think it's quite as imminent as that. I think you can get a coffee or go for a walk." This made a world of difference to me. It helped me to be a little more calm, and it freed me to take care of myself a bit more. That, of course, helped me to be a better caregiver to Katie.

I cannot give enough praise to the quality of care that Seattle Children's Hospital gives to its patients and their families; they call it "family-centered care," and it truly is so. Everyone, from the cleaning staff to the most eminent physician, is loving, caring, skilled and devoted to the children's welfare. It is not a place where anyone wants to have to stay, but if you do need to have medical help for your child, I can't imagine a better place to receive it. When asked to describe Seattle Children's Hospital in a word or phrase, Katie called it "hospitable." The reason that it feels this way is because of doctors like Tom. We will never be able to thank him and his colleagues enough for their care for all of us.
This relationship is an example of one of the blessings that was hidden in the tragedy of Katie's cancer: we worked with some of the greatest people we have ever had the privilege to meet. It doesn't make up for Katie's absence at all, but it is still a blessing to be recognized, and for which to give thanks.

Wednesday, May 27, 2009

Something New

This weekend, something new happened. I felt happy - deeply and truly happy - for the first time since Katie was diagnosed with cancer.

It's been over two years since I've felt this good.

I've always been a pretty positive person, looking on "the bright side" of things (cue Monty Python's "Life of Brian" music). I've always believed in the love of God, and had faith, hope and love as my companions. But ever since Katie received her diagnosis of cancer, with a life-threatening tumor that was not curable by medical science, it has been harder than ever to carry that resilience into each day and each situation. I think I quit trying, after she passed away. Instead, I worked to continue my relationship with God - with Love itself - in the moments that I've been aware and able to do so.

I have let go of most of my friendships, by necessity & choice. We have not had much company around here. Part of the reason for this is that we didn't want company; another part of the reason is that grief (and possibly menopause) has addled my brain, to the point that I cannot organize a large gathering, the way I used to be able to do it. That sort of thing would overwhelm me now -that is, since Katie passed away.

We have some relatives-by-marriage who I love very much. I have wanted to get them together with my parents (isn't this a cute photo of them?). When my parents came home from California, I started thinking about how and when to do this. I invited all of them, and went to the grocery store last week, to look for something to prepare for them to eat. Umm. The store had the largest hams for sale that I've ever seen. I bought a 21.5-pound ham for $0.99 per pound. Yes, you read that right: twenty-one and a half pounds of pork.

Now, I thought, I might want to invite a few others to share in the wealth, or we'll be eating ham for weeks. So I started adding family members and a few friends...and they invited a few others. We ended up with 20 people here...and it was good. It was better than good; I was ELATED.

Yes, you read that correctly, too: ELATED.
There were kids & adults on the rope swing, in the woods, on the beach, in the rowboat (even a CAT in the rowboat), & someone went swimming! We had a beach fire, fireworks and s'mores late into the night.

The funny thing is, people kept asking me what to bring, and I didn't know what to tell them, as I had most everything ready. They asked me what time I had said they should arrive, and I didn't remember what I'd said, so I just gave general guidelines. They asked how they could help, and I didn't have a clue, because I didn't need help; Gregg & David were already helping me. It was as if I wasn't in charge of this party; I was just hosting it, and it was a lot of fun doing it that way.

I realized, too, that I have a tendency, right before a party is about to begin, to suffer from obsessive-compulsive disorder. I start to go over the house with a white-glove mentality; no one and nothing (including me) is perfect enough for my standards.

The realization came to me as I was wiping up tiny specks of dirt from the wood floor, and once I recognized it, I knew I didn't have to suffer from its impulses. I could see that nothing IS perfect, and it doesn't have to be. I said to Gregg, "I think I get a little OCD before a party," and he quickly agreed with me. So I guess my little craziness is not a secret...& we shared a smile at it.

Hospitality is what matters; comfort for our guests is what matters. When you live right between the woods and the beach, things are going to get DIRTY...and they did. I didn't mind that at all. We wanted people to enjoy every thing that we had to offer them, and they did. I can clean up later.

The most interesting thing to me was the feeling of elation that I had during and after the gathering. What started as a meeting of two families grew to include others, spontaneously and naturally. It was a good feeling to be so happy, as if the clouds in my heart had parted, somehow. I told Gregg how I felt, and I marvelled that I could be this happy, even without Katie here. It's still amazing me today, and I'm thankful.

Anyone want a ham sandwich?

Note: all of the photos in this posting were taken by Mooselips (Paul Dudley), except this one, and the shot of Watermelon & her mom (which were taken by me).

Monday, May 25, 2009

18 Years

Today, Gregg & I celebrate 18 years of marriage.


I'm so thankful to be his wife.

He's my best friend,
my confidant,
my love,
my buddy,
the person whose company I enjoy above all others.

He has been with me through the best times and the worst times of my life.

He is the man who made me a mother, and he is a wonderful father.

He's the man whose family I am privileged to have joined.
He is beloved by my family.


He is my beloved.

I'm thankful to God for bringing us together.

Thank you, Gregg, for 18 wonderful years (and for your faithfulness and love through the ten worst months of our lives).

I love you!