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.
4 comments:
It is hard to come to and continue to walk around with that knowledge of the world - that no amount of love and deserving and sense of fair can stop horrendous things from happening. I am so sorry that this has come to you. You are not alone in this, of course, but I also understand how that is not of much, if any, comfort. It is a lonely, sad, and wordless place to be.
I would love nothing more than to have the magic wand that could wipe it all away.
Meanwhile, all that love and goodwill still surrounds you in your sorrow and will hopefully, eventually, bring you back to some sense of comfort and joy.
Meril
Dear Karen,
I have just read through all the posts written since I left to go visit Ali in college. I can't seem to express what a gift these are; I am so grateful for your honesty, for your willingness to call out to us from the bottom of the pit, to say it is dark and cold, to describe the blanket as well as the inadequacy of its warmth.
Yesterday I wrote about God shining through the black holes in our lives, but I forgot to mention that sometimes that light touches others even when we can't feel it. I sense the presence of God so clearly here, and yet it is a complete mystery to me how that could be, that God could somehow be present in the midst of something so enormously cruel and unfair. Perhaps it is your courage that sings, or the courage of the Katies and the Johans and the Dr. Dianes that shimmers in the air around this blog. But it's there, tangible, full of color and light; and I thank you for this extraordinary gift.
Dear Karen,
I remember seeing you guys that day. It was the day after Maddy had her transplant. I am so happy that we became friends in such an awful time for both of our families. The one good thing that has come out is that we were destined to meet and that god brought our families together. I am glad that you walked into my life. Thank you Katie and Thank you David for being there for Storm. It is so amazing how god works. You are truly blessed Karen and you made my day when I got to spend time with you yesterday in seattle. Please keep in touch, I love talking with you . You are a breath of fresh air and you speak my language all to well. I am always here. MJ
Karen,
I can't help it! Every time I go to the picture of Katie and "the gun show" I end up laughing out loud. What a beautiful picture of Katie and how it captures her personality. I contine to be inspired and "in awe" of your blog. I visit the Caringbridge site and your blog at least three times a week. You and your family continue to be in my thoughts and prayers every day.
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