Friday, December 21, 2007

Christmas Thoughts, Year 1


Christmas, 2005
To be honest, I have been a little baffled about why I am happy during this season. I thought that every day would be awful, full of longing and reminders of who and what is missing. The strange thing is that I am enjoying all of the small joys of Advent, and the days leading up to Christmas. I have been wondering why, and I can only think of a couple of things.

Last year at this time, we were suffering terribly. Katie was miserable in between rounds of chemo, and the last rounds were the worst. She needed medication around the clock to help her feel just "okay," and to control nausea, as well as 2-3 injections a day, and was only interested in watching TV and movies. We were all living in one small room at Ronald McDonald House, when she wasn't in the hospital: two queen-sized beds and a window-seat/bed, a table, two chairs, a TV/VCR/DVD player and (thank goodness) our own bathroom. David and I went shopping with my sister, Debbie to buy a wreath and 2 small (fake) trees, lights and decorations that the kids could make their own, and place on the windowsill of our room. Katie wasn't interested enough to finish hers. She skipped all of the opportunities at RMcD House to join in festivities, such as making gingerbread houses, caroling, a photo session with Santa or taking a holiday cruise. She just felt too awful. If you have ever loved someone who is suffering, you know that all who love and care for her suffer with her; that is compassion. It was a really hard time for all of us, especially since Katie and David LOVE Christmas.

The week of Christmas itself, Katie was an inpatient finishing a 5-day round of chemo; she spent Christmas Eve and Christmas morning in the hospital. I was with her, while Gregg stayed at Ronald McDonald House and visited us daily. We encouraged David to go home and spend Christmas with Uncle Charlie and Auntie Cheri, and to be with his grandparents, aunts, uncles and cousins. The Gerstenbergers really know how to celebrate Christmas, and we wanted David to be surrounded by that familiar love and joy. He did go, and he had a great time, but it was hard on all of us to be separated.

This year, we have enjoyed being in our own home, going to choose, cut and decorate a real tree again, hanging lights, making treats with Taylor, and (for me), spending quiet time praying with the Advent devotional readings. I love Advent; having been brought up as a Christian Scientist, I didn't know about Advent, and it was a revelation and a joy to me. The light and anticipation that are intrinsic to the season are helping me to deal with the darkness of the days and the strangeness of experiencing our first Christmas without Katie. Last year she was with us in body, but not in spirit, because she was suffering so much. This year, she is not with us in body, and I assume that she is not suffering any more; I feel she is free, and that is what I pray for her. I do not say "I know," because I cannot KNOW; I can hope and pray and feel, and that is going to have to be enough, for now. So I am thankful and joyful for what I have, and I will continue to love my girl with all of my heart. I wish she were here with us, enjoying Christmas, wearing her Santa hat with David...but she is not.
I found this poem in Elisabeth Kubler-Ross's book, On Death and Dying:
In desperate hope I go and search for her in all the corners of my room; I find
her not.
My house is small and what once has gone from it can never be
regained.
But infinite is thy mansion, my lord, and seeking her I have come
to thy door.
I stand under the golden canopy of thine evening sky and I lift
my eager eyes to thy face.
I have come to the brink of eternity from which
nothing can vanish--no hope, no happiness, no vision of a face seen through
tears.
Oh, dip my emptied life into that ocean, plunge it into the deepest
fullness. Let me for once feel that lost sweet touch in the allness of the
universe. - TAGORE, from Gitanjali
Tofino, BC, about a week after Katie's Celebration of Life

Wednesday, November 7, 2007

Grief Help

We were introduced to a website called www.caringbridge.org when Katie was first in the hospital. It is a wonderful way to stay in touch with the world when you are facing a serious problem. David set up Katie's page for her, but she decided not to be involved with it. I used it to communicate with the outside world, since Katie decreed that medical details not be discussed in front of her. That ruled out using the phone, and she disliked having visitors as time went on, so the website became a sort of lifeline for me with our community.

I have learned a lot from reading other people's caringbridge pages, and I came across a new one recently. This young lady had just passed away, and her mother posted the following advice on dealing with grieving friends/family; it is extremely valuable.
From Taylor Baum’s caringbridge page:We have a choice. We can be bitter and resentful to others or we can help them understand and be part of our grief journey. What follows are what I call "10 Grief Lessons for Others." By sharing these lessons with those close to you, a new level of understanding between you and others can help you down that long difficult road to recovery.

1. BE THERE FOR ME.
If you are my friend, reach out, talk to me, hold my hand, hug me. Know that even though we may say we are all right, we will never be all right again.

2. WE ARE DIFFERENT.
Understand that what has happened will change us forever and if you are my friend, you will accept me for what I have become, for who I am now, a person with different goals and different priorities. What was once important to me may no longer have any meaning.

3. BE A GOOD LISTENER.
We want above all else to talk about our loved one. To us, they will always be alive in our hearts, and we don't want others to forget them either. Don't be afraid to mention their names in our conversations. They were real people at one time, even though they are no longer with us. They had hopes and dreams we'd still like to share with others. Please don't pretend they never existed.

4. NO ONE ELSE KNOWS HOW I FEEL.
We all grieve differently. Please don't tell me you know how I feel. You don't. Rather than asking me, "How are you feeling?" ask me "What are you feeling?" I can probably give you a more honest answer.

5. I MAY GRIEVE FOR A VERY LONG TIME.
There is no set time limit to my grief. It may take me two years; it may take me five years. I have to do what is comfortable for me. Be patient. I will do the best I can in whatever amount of time it takes.

6. KEEP IN TOUCH.
Call me once in a while. I promise to do the same. Invite me to lunch or to a movie. I will eventually go, because I will eventually feel better. Don't give up on me and don't forget me. I am trying to do the best I can right now.

7. I MAY CRY AT TIMES IN FRONT OF YOU.
Please don't be embarrassed, and I won't be either. Besides being a natural emotion, crying is also a cleansing emotion. By crying I can relieve a lot of anger, frustration, guilt and stress. And best of all, I feel much better after a good cry.

8. I PUT A MASK ON FOR THE PUBLIC.
Don't assume just because I am functioning during the day that I am "over it." I will never get "over it." I try to function normally because I have no other choice. You should see me when the day is over, and I am in the privacy of my own home and free to let my emotions out. My day mask comes off and I am just a mother, aching for her child.

9. SOME DAYS MAY BE OVERWHELMING.
The slightest thing can trigger a bad time. It can be a song, a place I go, a holiday, a wedding or even smells or sounds. If I break down and start crying or seem to be in another world, it is because I am thinking of my loved one and longing for what I will never have again. I may need to try different things before I find what will be right for me in my new life. Encourage me to reach for the stars.

10. LET ME DO WHATEVER MAKES ME HAPPY.
We will never forget our loved one. The pain never leaves. It just softens a little with time. We eventually function again, feel hope again, find joy in our lives. It is a long road that we travel, but with the help of friends and relatives who understand a little of how we feel and what we are going through, perhaps that road will lead to new paths to enrich our lives in new ways we never dreamed were possible.
Another resource which was brought to my attention by a staff member of Seattle Children's Hospital is http://www.griefhaven.org/
This is a sort of clearinghouse of information for bereaved parents; it is a website started by a bereaved mother, Susan Whitmore. Check out their newsletter archives, if you are looking for some writing by people who understand.

Friday, November 2, 2007

A Quilt for Comfort

Today, Maribeth came over, and we sewed our first prototype quilt for Children's Hospital. Let me explain the project...
Katie had a quilt (mentioned in an earlier blog posting) which she took with her to the hospital, by grace. I think I also mentioned that I am very much a BEGINNING seamstress, yet I had made that particular quilt, with help from Rita, who is an ADVANCED seamstress (among her many other talents). It was very well-loved, all the way to the day Katie passed away. She took it everywhere she went during her illness, to every scan, procedure and appointment. She slept with it. I have been sleeping with it myself, since she passed away. This is a photo of it, folded so that you can see both sides. It is soft as a whisper, threadbare in places, torn open in others from wear, use, love, service. It has satin binding and is flannel on one side, with cotton quilt fabric on the other. The colors (primarily yellows) coordinate well. The quilt fabric has different state flowers on it. When we were really bored, sometimes we would study those. I am so grateful to be the person whose hands made a gift that gave Katie comfort every single day.

Since Katie got so much comfort from that blanket, I was thinking how good it might be to make them for other kids...particularly those who may end up at the hospital in shock, like we did. If you had to go to the hospital suddenly, possibly far away from home, would it be nice to find a soft, thick, warm, handmade blanket at the end of your unfamiliar bed? I think it might. I spoke to several friends who sew, and everyone agreed.

Maribeth is one of those friends. MB is a cancer survivor herself. Whenever she would sing a solo in church, I would sit in a pew, listening and crying, because I was so happy that she survived. She is one of the first people I called the day that Katie's tumor was discovered. She has been a rock for me throughout this whole nightmare, one of the people I can bare my deepest feelings to, complain, laugh, be appropriate or inappropriate with, dark or light...and know that whatever is, is okay. She and I (and Katie) share a similar sense of humor, and she NEVER patronizes. She loved Katie dearly, and they had quite the bantering relationship over the years.

MB's daughter, Taylor, was one of Katie's teenage role models. We call her "da bomb," because she is so pretty, talented and sweet. Katie and I would always go to see MB and Taylor perform in local musical theatre productions. Katie loved watching her friends on stage, and they inspired her to try the BPA Theatre School, which she loved very much.

When Katie was sick, she and Taylor spent many hours watching their favorite movies, sitting on the couch or on Katie's bed, relaxing together. Katie could just be silent with Tay, and they could do nothing, very happily together. Taylor was a great comfort to Katie, and brought joy to her last weeks. She was one of the few people who were always welcome in Katie's room.

Taylor decided to take on the quilts as her Senior Project in high school. She is going to assemble simple quilt kits for people to purchase; the proceeds will go to Children's Hospital, and the blankets can be sewed from the kits, and donated to the Hospital, if the buyer wishes.

So today, MB and I tried our hands at sewing a prototype, since we need one to show to family and friends who will want to buy the kits. It is flannel on one side, and cotton quilt fabric on the other, with satin binding, like Katie's. It turned out well, and it was really fun to work on it together. I can see this becoming a good thing; it's therapeutic, and a good time to chat, while accomplishing something worthwhile. As the project gets underway, I will post more info.

Thursday, November 1, 2007

Inspiration from Christopher Reeve & Katie

I have been thinking about the actor Christopher Reeve lately. I've read a few of his/his wife's books. He wasn't my favorite actor, but I really grew to admire him after his injury. He never gave up hope, and his efforts to make progress, to stay as fit as possible and try to walk again. He went through many stages of grief after the accident. I recall something he said, to the effect that he had a choice of what his attitude to his situation would be. That he knew that if he became a "depressed hulk in a wheelchair" it would make things much worse for his family and for himself. I have been thinking about this in light of the fact that in this part of the world, we live with the illusion that we can control much more than we actually can. We are faced with so many choices every day, even as small as which type of peanut butter to buy (creamy or crunchy? Natural or with additives? Large or small?). This variety of choices tends to wear me out. However, I like to think that I have the ability and the privilege to choose...

But here is a catch: this habit of choice tends to lead to the belief that we have a right to choose. Sometimes we have; sometimes the right is only to decide how we will face something that we didn't choose. Christopher Reeve did not choose to become paralyzed at the height of his mental and physical fitness, in the prime of his life; he was able to choose how he faced it. Katie did not choose to become ill and die; I did not choose to have my daughter taken out of my life. The fact of the matter is that we were not given the power to make things work out the way we wanted them to; we tried as hard as we could to save Katie's life, but she died anyway. We must accept that. Katie faced her illness with humor, a bit of anger, a bit of fear, a lot of courage and strength, and the tools she had at hand. She faced her death the same way. Now, I get to decide how I will face my life without her presence.

Some days, I want to fight, like a mother bear whose cub has been threatened and taken. I want to fight against accepting that I did not get to decide how this turned out; I accepted everything short of this result. I adjusted to all of the hardships that were thrown at us, but I would not allow defeat into my mind; I held onto hope. Now, I just want to say, "Show me who did this, and I will shred him, tear him apart, limb from limb, and annihilate him." Of course, there is no one to blame except the disease itself. When I am in fight mode, I feel cut off from comfort. It seems that the most comfort comes when I can humbly sit with God and say, "I need Your help. Please help me today." But some days, even though I know it does no good, I still feel like fighting. This does not seem to lead to healing.

I want to choose to live with this with grace and good humor, and to see God make something, create something, out of it. I have hope for what His/Her creativity can do. I do not believe that anything can compensate me for this loss. Nothing can fill a Katie-shaped hole except Katie. But if I try to put my energy toward acceptance with love, with gentleness, perhaps it will be better for me and those around me. I believe that Christopher Reeve accomplished more, and inspired more people, after his injury than in all of his able-bodied accomplishments. Perhaps I can learn to live with my brokenness in a meaningful and loving way, too; I pray that I can.

My doctor recently asked me how I was coping, and if Katie had given me any instructions before she passed away. I thought for a minute, and told her that we had discussed Dana Reeve's passing last year, and that I told Katie that I thought she died of a broken heart after her husband, Chris, passed; I believed that she missed him so much that she became ill. At that time, Katie told me, "Mom, if I die, don't do that." The doctor said, in effect, "I guess you have no choice," indicating that Katie had given me my "marching orders." I haven't felt like giving up, but it was a reminder of Katie's clear sense of direction & her spirit.

The ovens have been fixed and the microwave was replaced. We are still awaiting parts for the dryer. I have heard from more than one person that after someone passes, things break down (thanks for sharing this, Meril and Karen T.). Our house is only 7 and a half years old; maybe it just feels the way I do: a bit broken. We need to be willing to do alot of things in a different way, in order to live with the brokenness.

Wednesday, October 10, 2007

October 10 - Year 1

This is the day, one year ago, that we went to Children's Hospital in Seattle through the Emergency Room entrance, and stayed. We were terrified. We were questioned for hours, by many teams of doctors. We waited. We tried to help Katie relax. We called our parents.

Thank goodness that she had the foresight to bring her favorite cozy blanket with her, the one that I made (I am not a good seamstress) with Rita's help. That blanket went everywhere with her, the entire time she was in the hospital, to every scan, procedure, room change and appointment, as a shawl, a cover, a cloak, a mask & an air filter. It is now on our bed. She was funny about it: there was a "right" side and a "wrong" side, an "up" side and a "down" side. I am the only one who understood this. And I keep it the way she liked it, on my bed. She would never let me mend it. It has some holes in it, and it is wearing thin, but I was not allowed to sew it up. I was allowed to wash it, as long as it was back with her by the end of the day.

It would be hard to describe the quality of our fear. I could tell you about it in several ways, but the one that comes to mind is this: at this hospital, with the combined resources of the University of Washington Medical Center, the Fred Hutchinson Cancer Research Center, and Children's Hospital's own renowned doctors, we were told, "We never see this." "In 25 years, I have never seen this." "This is very rare in adults, and even more rare in children." "It is inoperable, and it is not chemo-responsive." Here we had a perfectly healthy child, who just happened to slow down and have a slight fever, on and off for 3 weeks, and --WHAMMO!-- it is revealed that she has a tumor extending throughout her abdomen. One, huge, invasive tumor, and it has entered her heart.

So on this day, this year, I need to stop and say, oh, how I recall the awful feelings of that day. So much has happened since then. The world has become a darker place, for me, yet I learned & saw many important things along the way. The worst thing I learned, at least as I see it today, is that you can work as hard as you know how to work, with all of the experts and expertise available, with the best of intentions, surrounded by good will in amounts that you never dreamed possible, with a love so great that it's hard to believe it flows through one human heart, and you may still have to watch your child suffer and die. That is why the world looks so different to me now; that, and the fact that the light of one lovely, feisty, gorgeous, hilarious, spritely, creative 12-year-old girl is no longer with me in this place.

Wednesday, October 3, 2007

Christmas Card Thoughts...in October

I have been thinking about Christmas. Christmas in October?, you may ask. Yes, because this is the time of year when I begin gathering ideas for gifts, and more fun than that, I go through the photos of the past year in search of a great one for our Christmas card. Sometimes it doesn't get taken until November, as a number of them were: we would take a photo in Palm Desert during the Thanksgiving holiday with Grandma and Kappa.

This was a challenge last year, as we were in the hospital with Katie and at Ronald McDonald House. The kids were heartbroken to miss the annual trip to the Desert. Getting a good photo of the four of us was impossible, since Katie had lost her hair and refused to cooperate with any family photo. Instead, I went to a file of photos that had been taken by a professional in May, 2006, before Katie got sick, when the kids were hoping to start modeling/acting. I chose one of David and Katie, and made it into a sort of "thank you-Merry Christmas" card.

This year, it is a heartbreak. We have one really good photo of the four of us, taken at Andrea and Mike's wedding, 2 weeks to the day before Katie passed away. It's the only family shot that we have from 2007. The problem is, Katie doesn't look as pretty as I KNOW she would want to in the picture, and I think it would make her mad if we use it. On the other hand, this is the last year that we will have a shot of the four of us, so it seems stupid to skip it over some vanity. On the OTHER hand, we have some good photos of just the three of us from our trip to Canada last month, which would show how life is now. And we might get a good shot in the Desert this year. Then again, I can't imagine our Christmas photo without Katie...and around and around I go, on the little hamster-wheel in my mind.

Another thing: if attachment is a source of pain and trouble in our lives, especially our spiritual lives (check your Buddhist writings), why are we mothers hard-wired for attachment? Look at your umbilical cord, as an example; everyone gets one. That cord sustains life for months, as your mother gives you some of everything she has in order to help you grow. When you are born, it gets discarded, but do you ever wonder about how the thing grows, without any effort on your part, or your mother's? It is just THERE when it is needed. So tell me, how are we mothers supposed to face the permanent absence of our child? How would I stop feeling that there has been an amputation where Katie is supposed to be? I am all for children growing up, individuating, moving forward into their own lives, fulfilling their dreams and the design of their own being. Going to college in another state is fine with me; dying is not. It's a violation of nature, and everything in me just screams that it is wrong. It IS wrong, but look: it has happened.

Oh, and another thing: I had one of those Peter-Rabbit-in-Mr.-MacGregor's-Garden moments yesterday, at the grocery store. You know, the moments that you hear about, but cannot imagine yourself being part of...I was pushing my cart full of groceries into the frozen-food aisle, going for the waffles that David prefers for breakfast. Standing right in front of those waffles were two lovely ladies I know. They were so sweet, and happy to see me. But I wanted to run the other way. I actually considered leaving without the waffles, in order to avoid any social contact. It wasn't personal; it was just social contact, in which socially normal behaviour is required/expected. I didn't feel normal; I felt stripped and vulnerable. I felt like a hermit, who doesn't remember how to behave around people. It was the first time that it's happened when I have been alone. I did the best I could, but I feel sorry about my response to the lovely ladies; I know they meant well. How odd, when a mere offer of a hug, and a "How are you?" feels like jungle warfare. Perhaps there is something a bit "off" in me. Hmm...

Tuesday, October 2, 2007

A Hard Time of Year

We are heading into a difficult season, for me. It's early October, the time when Katie was first admitted to the hospital, one year ago.

Last year at this time, Katie was sick with what we (and her doctor) thought was a virus. Mono was going around our area, and her symptoms resembled mono symptoms, except that she tested negative for it, twice. She was weak and tired, and had dark circles under her eyes. She slept alot. I kept her home from school due to her lack of energy and her low-grade fever. I took her to the doctor for blood tests and other tests. This went on for 3 weeks. We did the online homework drill, with me going back and forth to her school for books, and to turn in the homework that she was able to do.

Finally, we noticed a slight swelling in her zyphoid process (sternum area), and the doctor ordered an ultrasound. Beginning of nightmare...October 9th, 2006. I got a call from our doctor that same day, after the ultrasound results came in, telling me that there was a large growth in Katie's abdomen, around her kidney and heading up towards her heart. I found it hard to breathe. I told the doctor, "You have to stop talking." I set the phone down on the kitchen table, and lay my head down as I tried to breathe. After a few moments, I told her she could continue. I was told to get Katie to a CT scan, that afternoon.

Wouldn't you know it, that day David had a friend over. We got in touch with his mom, and she came to take him home. I called Gregg & told him to come home as soon as possible. I called my mom and asked her to accompany us to the CT scan. I took Katie and my mom and we went for her first-ever CT. After the scan, Grandma bought Katie a stuffed animal at the hospital's gift shop, and we took her out to her favorite restaurant for dinner; her choice: a cheeseburger and fries. Then we went home, and the next blow fell. The CT revealed more of the tumor, and we were to go to Children's Hospital in Seattle first thing in the morning, as soon as we could get copies of the CT in our hands.

On October 10th, we entered via the emergency room, and the nightmare began to unfold before our unbelieving eyes. Katie was tested, questioned, and examined for hours, and finally, admitted to the Hematology-Oncology floor (affectionately known as SCCA, the Seattle Cancer Care Alliance).

Let me just say here that the feeling we had over and over, and still have is: there must be some mistake. We don't HAVE cancer in our family. To this day, I think: maybe I was hit by a truck, and I am in a hospital somewhere, out of my mind, and dreaming this. I wish it were so, instead of what is instead true: this cancer took 10 months to kill Katie. We tried to shrink it, kill it, have it cut out, and again to keep it at bay with drugs. But no, it was going to do its thing in her body.

At first, I felt as if a rapist had got into my house and into my daughter. I just felt that she had been violated by a silent, unseen assailant. How DARE this thing sneak in like that? Where were the signs? Where were the symptoms, when it was tiny enough to fix it? Why not a peep, not a bump, not a bulge, not a blood marker, until it was encasing her adrenal gland, kidney, in a lobe of her liver, filling her inferior vena cava and IN her HEART? I was filled with rage, and terrified.

So now, one year after her diagnosis (and nearly 2 months after her passing), I'm having some bad memories, flashbacks, of this time last year. Remembering fear, trauma, the desire to protect my girl from something completely out of the blue, out of my control; I've got some simmering anger about it, too. It is what it is, and there it is, today.

Monday, October 1, 2007

Goodwill from Katie

When Katie found out in July, 2007 that the cancer had returned, in the form of an inoperable tumor, she did something very powerful. A day or two after she got the news, at age 12, she started to write her will...on notebook paper, in pencil. She thought this through by herself. She included her favorite possessions, her money, clothing, books, etc. She was quite specific.

She said that she regretted not being able to leave David something big, like a professional baseball team (I told her that since no one in the family has that kind of money, no one would dream that she would do such a thing anyway). This was after watching the movie, "Little Big League," in case any of you know about it.

One of the most interesting things about her will is how she divided her money. She had a little savings account, where Christmas and birthday money was deposited over the years. In her will, she left half of the money to charity: the Goodwill, to be exact.

We have often donated outgrown clothing to the Goodwill collection site near our town. She and David have been with me on these trips. I don't recall ever discussing this beyond, "We need to make a stop here..." and dropping the items off. But something about it stayed with her. She knew about other charities, because we have decided as a family which charities to support, and have discussed what they do with the money that we give.

The trip to the bank to empty her account was not pleasant for me. The teller was lovely and kind when I told her what I was there to do. She asked how old Katie was, how she died, and and got tearful when I answered her questions; it was awkward. I am a helper; I felt the urge to comfort her. I told myself, "It is not your job to comfort this lady for the death of your daughter." So I stood quietly on my side of the desk, as graciously as possible under the circumstances, and waited as she counted out the money. Then I thanked her, and took it home.

I contacted the Goodwill in Seattle, and after a phone call and a bit of correspondence, I wrote the check, according to Katie's last will: $642.00 to Goodwill. It is a lovely thing, that a 12-year old who has just learned that she is dying, would think to donate half of her money to charity. I love basking in that thought, and admiring Katie for doing it--except that she is my daughter, and I would rather have her here, alive. So actually writing the check and the accompanying note was very, very difficult to do. It felt final. It is a final act, one that I am carrying out for my beloved daughter, because it was her "last will," and she is not alive to do it herself. These acts of closure feel kind of cruel.

But what a gal! She took what power she had, and used it positively. You go, girl!
Article in the Goodwill Ambassador publication about Katie's gift