Wednesday, November 7, 2007

Grief Help

We were introduced to a website called 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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
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.