Many people have written to say, "I hope no news is good news." Indeed much has happened since September 11, 2003, when I wrote the last update and most of it—related to our journey with the dragon—has been uneventful (which is mercifully pleasant). The dragon which inhabited Kinsey's body for 17 months (or was it years?) is still enjoying his extended vacation on the island and is moving toward solidifying plans to retire there. The FAO Swartz dragon who became our symbol for the real dragon is still hanging upside down from our flag pole. Despite being "drowned" in the pool during Kinsey's first swim in 2 years, being pelted with rain, ice, and snow, and being tossed about in 50 mph winds-the damn thing remains in perfect condition, not a single tear in his seams nor a blemish. I am considering approaching FAO Swartz about our doing a commercial for them as I now understand why their stuffed animals are so pricey. When I replaced the ladybug flag with a Santa one, I asked Kinsey about taking the tortured thing down. She adamantly insisted he remain, as did Audrey.
Shortly after the last update, we moved to a new and exciting stage in the continuing saga of aplastic anemia treatment-Kinsey's clinic visits became MONTHLY. While a little scary, this was great news and we have enjoyed our long stretches away from the beloved home away from home. Kinsey's counts have continued to slowly climb and her red counts remain in the lower portion of "normal" range. The white count, which has always been the most unpredictable and difficult to manage, has risen above 3 (normal is 4-12). We had been waiting for her platelets to get above 75,000 (the level at which we are told one no longer has to worry about a simple bump on the head resulting in a brain bleed). At her visit in October they were 72,000! We were almost there. In November-112,000! Last week-113,000 (a little disappointing but we'll take it).
She continues to have monthly breathing treatments which she HATES but as we remind her, "It'll be over for another month." She remains on a low dose of an immune suppression drug: Prograf. Dr. Big Dog says one day in the not so distant future we will have to "bite the bullet and take her off that and see what happens," after her counts are all normal. As long as she is on that, she will have to continue the breathing treatments (to prevent PCP, a type of pneumonia) and do a daily swish and spit rinse at home. As long as she's on that, her immune system will react a little differently and she will have to take mega antibiotics should she get an infection (such as the ear infection she got 10 days ago). This morning one of her Christmas gifts was the fact that she got to take her LAST dose of the horse pills. As annoying as some of this can be, we acknowledge daily how insignificant it is in the bigger picture of our lives. And comparisons, particularly during the holidays, have never been far from our minds. We say, "Remember this time last year when..." We tear up at the memory. We shake our heads and take deep breaths. We smile at the current reality. We have a gingerbread ornament from Audrey's niece with Kinsey's name on it and a photo we inserted into the "belly." It hangs on the tree near my chair at the dinner table and I look at it almost every night with disbelief. Disbelief because she looked so bad then and disbelief because I remember thinking when I looked at that picture a year ago how good she looked-compared to...
Life is different this year in many ways, not all of them positive—but most. This time last year we played a lot of board games and had a great deal of quality family time. As I passed the stacks of board games on the shelves downstairs last night (on my way to digging out Santa's presents hidden under the steps), I thought, "Gosh-we haven't played one board game since Thanksgiving!" Why? We're more like most other people this year: we haven't had time! I am back to working full time. Kinsey and Jillian are in school, which they both LOVE. Kinsey has been in a play which has taken a HUGE amount of time over the last 8 weeks AND we have our newest addition, who just turned 10 months, and who is full of energy and mischief and would not allow us all to sit down to a quiet board game—unless we gave her parts to chew on. The last reason might be that we all got a little sick of them during our summer quarantine. In any case-we got some new ones for Christmas from our Christmas Fairy Ms. Fran and we have been playing them today. Kinsey and Jillian are still playing as I type, but I got a little tired from the one that involves jumping, skipping, sliding, and putting your elbow, knee, and nose in three different places.
It's not that our lives were really less hectic then, but they were simpler. Everything revolved around the hospital schedule and the medication schedule. Now we have the school schedules, work schedule, play schedule, Teagan's schedule, acting lessons, gymnastics, and all the other things that a regular family encounters.
Our lives are no longer of the stuff that makes the evening news or the National Enquirer. We met with a writer last week who wants to write a book with us about our experience. She already has an interested agent and we are exploring next steps. These days, our lives are not interesting enough to make for really enjoyable reading but the stuff of which our days are made makes for far more enjoyable living.
It is NOT that we've gone back to normal. Our lives are forever changed-deeper, richer, filled with a great deal more sadness and a great deal more joy than they ever would have been without having met the dragon, having done battle with the dragon, having learned to live with the fear of the dragon's return. We are all better people because of him, but make no mistake-we would all trade our "enlightenment" in a heartbeat to just pick up where we left off and somehow miss the chance meeting that allowed him to take up residence in our little girl's body. The price has been great, but we not only have Kinsey mostly healthy, we have Jillian still healthy, and Teagan, too. So we can try to say it was all meant to be, and perhaps even mean it. We can say things happen for a reason and perhaps even believe it. But it's still hard some days.
Our firstborn baby daughter has been through a journey in her first few years of life that most adults have never had to face. She is so wise beyond her years and smart. She understands medical terms and has strong opinions about cremation vs. burial. But she still believes in Santa Claus! And she jumped in bed with us at 7:30 this morning to ask, "Did he come? Did he come? Can we go see?" (I said, "Can we have 5 more minutes?") She is an angel, a miracle child for whom we are grateful every single day.
She is an angel and her name is Juanita! Juanita the baby angel—a small but important part in the Best Christmas Pageant Ever, playing now at the Marcus Center for the Performing Arts. She has two lines and sings five songs with other angels. It is a wonderful play and we have been thrilled to be a part of it—all of us. I've seen it about 14 times, Jillian about 12, and Audrey about 9. Special thanks to Aunt Ann who came from Kentucky twice to see it and celebrate Christmas with us and to Aunt Dee Dee and Jennifer, who also traveled from Kentucky for an opportunity to see Kinsey on stage. Special thanks, too, to Nurse Lynnette and our neighbors the Vachons who went to see it and to Ms. Froiland, Kinsey's teacher, for going and for taking the entire first and second grade (combined) class to see it. (Note: Kinsey moved from first to second grade in November but got to keep the same teacher).
After 4 weeks of 12-16 hours per week of rehearsal, the play began the day after Thanksgiving. There are two full casts of young performers and a total of 48 performances-24 each. Tomorrow is the last one for each cast, and we are all a little relieved and a little sad to see it end. There was an article in the Milwaukee Journal Sentinel: Not Waiting in the Wings, with a photo of Kinsey with her mouth WIDE open singing "GLOO-OO-OO-OO-OO-OO-OO-OO-OO-OO-OO-OO-OO-OO-OO-OO-RIA," wearing a halo, a seventies hair band, and purple "bed sheet" with a tie around it. When I hear the crowds—all near capacity for the small 500 seat theater-cheer and clap, I imagine they are all clapping with me for the baby angel who sings so beautifully and shines so brightly during her "moment" on stage, for the baby angel who could very well have been a baby angel in Heaven instead of on stage. We clap so hard and with such enthusiasm that Teagan actually learned how to clap at the back of the theater for the one performance we've braved with her. In reality, most people are simply clapping because it's a wonderful play that is thoroughly entertaining and well worth the $24 ticket, but for us there is so much more for which to clap and cheer. I've yet to see it without laughing hard (something we didn't do as much of a year ago) and I've yet to see it without crying—real tears of joy. I am moved by young children who work so hard and can perform so well and by the story they tell, and by the baby angel Juanita whom I can hug after each performance and not just pray to.
I am happy to be a part of another circle of parents and children—not focused on sickness and dying and fear and grief. But I will always be a part of that circle, a member of that club. I read books about children who have died, parents who have lost children, or families who have faced similar struggles and won—just as we seemingly have. I read books with titles like The Art of Condolence because I want to be good at dealing with this stuff and helping others deal with it—all with the pleading hope that it will not hit so close to home ever with my children.
We only have to go to the hospital once a month now for Kinsey's labs and treatments (actually twice—one evening for labs and the following afternoon for her breathing treatment and exam), but we are there more often than that. I visited my friend Ann in November there, the mother of baby Gen who died July 4. She had a baby boy named Paul on October 28, born with the same disease unbelievably (a genetic disorder that neither she nor her husband Paul carry the gene for). Paul only lived a few weeks and Kinsey and I attended his funeral a couple of weeks ago. So short was his little life that an ultrasound picture and hospital bracelet were among the items displayed. I remember his toes, and how Ann pointed them out to me—so cute and a little crowded. It was a tender moment, a normal moment with a mother showing off her baby. For that moment I think we both forgot about all the tubes and wires he was hooked up to and saw these adorable little feet that should one day run and play and eventually take the man he should become where he needed to go. But he was denied even the few milestones his big sister got to experience—two birthdays, two Christmases... Like Gen, he was baptized and that seemed to bring a great deal of comfort to the family. At least the minister talked a lot about the comfort of Jesus having secured Paul's eternal life with his own death caused by the sins of all of us. I just thought, "Yeah, yeah, yeah-but WHY? How could this happen to one couple, twice within 5 months???" I guess that's the time you have to go back to the "Everything happens for a reason" defense. The obituary said that baby Gen now has a playmate in Heaven. I know I would say the same, and I think that image would offer a penlight of comfort in a sea of darkness, but the truth is this whole experience has cost me some faith in such sweet notions. I found words for much of what I have felt during this journey in a book called A Broken Heart Still Beats. Anne McCracken writes,
"When your child dies, you wail, 'Why?'... You keep searching for an explanation. And truthfully, not really that so much as comfort. Any comfort will do.
Such searching inevitably takes grieving parents to God's door where some will open it and cry out for help. Others will furiously kick it and shout obscenities. And others still, citing God's powerlessness to avert suffering, will bypass it.
...I didn't turn to God; I didn't berate Him. He just didn't figure in. The only higher being in my life was some vestige of a punitive Zeus-like god who still shows up occasionally. A master marionnetist, he seems to hold my family on long strings and make us dance at his whim. I see him as often distracted. He doesn't notice right away when we're doing all right. But when he does, he gives our strings a whack and sends us crashing into one another. Years later, even in good times, superstition compels us to warn each other, 'Hush, he will hear you.'
But that's just black humor. I have no real quarrel with any god. Instead I've come to see Jake's death in very simple terms: bad luck. And believe me there's nothing comforting in that territory. It's just a dark place of sadness and fear. When you view life this pragmatically, there's no place to hide.
Friends would try to comfort me by saying, 'Anne, nothing worse can ever happen.' But yes, it can; they, and I, know better. My daughter and husband can be killed too. There's nothing statistically fair about bad luck. Just read the newspaper for a week if you need that driven home.
So early on, the only satisfactory answer to 'Why?'—and the even more self-centered 'Why me?'—became 'Why not?' How could I have thought that tragedy was reserved only for others? That I was somehow special? Happiness and I had enjoyed a long run. I knew that. I just wasn't special anymore.
No, the question that pierces my heart is not 'Why me?' but 'Why Jake?' Just a month shy of six. Why Jake? That's harder. That's much, much harder."
William Maxwell is quoted in the same book:
"It seemed like a mistake. And mistakes ought to be rectified, only this one couldn't be. Between the way things used to be and the way they were now was a void that couldn't be crossed. I had to find an explanation other than the real one, which was that we were no more immune to misfortune than anybody else, and the idea the kept recurring to me...was that I had inadvertently walked through a door that I shouldn't have gone through and couldn't get back to the place I hadn't meant to leave. Actually, it was the other way round: I hadn't gone anywhere and nothing was changed, so far as the roof over our heads was concerned, it was just that she was in the cemetery."
Finally, from a novel by Peter DeVries, based on the suffering and death from leukemia of his youngest daughter, The Blood of the Lamb, parents with children on the same cancer ward debate the question WHY?:
"What baffles me is the comfort people find in the idea that somebody dealt this mess. Blind and meaningless chance seems to me so much more congenial-or at least less horrible. Prove to me that there is a God [controlling this] and I will really begin to despair."
Our dear friend Bettye recently lost her life partner Jim to cancer. His death was sudden and this time last year their life together was good. We've talked a lot recently about death and dying and people's reactions to it. One person told her that in grieving she was selfish because Jim was in a better place. Regardless how you might feel about such a notion, the idea of criticizing someone else for grieving or for how they grieve is obnoxious. How many of us would trade places today with Jim? How many of us would trade places with Bettye so that we could have the peace from knowing our loved one is in a better place? Jillian was saying our evening blessing a couple of weeks after Jim's death and she asked God to be with Jim. We gently reminded her after the blessing that Jim had died. She smiled and said, "I know that, but he's an angel now and God can still be with him."
Kinsey and Jillian talk frequently of angels in Heaven. They've known of many children to die. While they understand the natural order of things, they know well life doesn't always work that way. Jillian, like Kinsey, has strong feelings about death but doesn't quite understand some of the logistics. She told me last night, "Mommy, I don't want to be buried when I die. Do I have to be buried?" I explained that she didn't and that she would just need to tell her spouse or children what her wishes were before she died (100 years from now I silently prayed). "How do they do it if they don't bury you?" She asked. I made the mistake of starting to explain about cremation but stopped short. She said, "I don't want that either Mom, I just want to go straight to Heaven." "Okay I told her, you can. And now you need to go to bed so Santa can come."
So, why, you might ask all the talk about death and dying here on Christmas day, a day filled with joy for us, a day when we are indeed happy healthy and whole? Our lives are filled with the joy of being alive and appreciating each other, but we cannot forget where we've been and we cannot forget those who continue to face some of the very struggles we now find ourselves on the other side of.
A family from W. Virginia is here because of Kinsey's website. Stephanie, 13, also has Aplastic Anemia and was not doing well. She was diagnosed 16 months ago, but was misdiagnosed for a full year before that. Her parents found out about Dr. Big Dog via Kinsey's website, called him, and now Stephanie is doing much better. But she is still very, very sick. I visited her and her mother recently and she began throwing up while I was there. It brought back such memories of Kinsey leaning over that yellow bucket—vomiting bile and blood. I remembered how good I'd gotten at grabbing for it in my sleep when she'd make the first sounds of gagging and how good Audrey and I were at coming out of a sleep and grabbing for the towels we'd put on the end of the bed (once she was home) to pull up in front of Kinsey, sleeping between us. These things became routine. ROUTINE. And so now as we return to things that are more normally routine, we cannot forget where we have been and all that we have learned.
Kailee is back in Milwaukee for treatment and a possible transplant. She still does not have a perfect donor match and things are not going particularly well. That first summer we were here, Kailee was doing very well compared to Kinsey. I would watch her and Jillian play and think, "Why can't Kinsey be well enough to play like that?" And today, the roles are somewhat reversed. I am deeply saddened for Kailee and her family and I am humbled by the all too real knowledge of how quickly things can change. Whether it's God revealing a bit more of his mysterious plan or a marionette yanking our string—it could happen. And while I will not let the fear of that rule my life, it will keep me vigilant for opportunities to hug my baby angels.
The Kinsey Is Well Party has been temporarily cancelled, but we are still going to Disney World. The defining moment when the transplant was declared a success and the dragon dead, we now know, is not going to come—at least not in the foreseeable future. And perhaps a transplant would have offered no more real reassurance of a future filled with wellness. In any case, she is fairly well today, well enough to ride any ride she wants, well enough to go without multiple (or even a single) transfusions, and she is well enough to walk around without an IV backpack for any portion of the day. Jillian, too, is healthy, as is Teagan. And we realize we've spent a great deal of time and energy (understandably) focused on Kinsey's health and Kinsey's illness. So the party which will take place between January 23 and February 2 is called the Happy, Healthy, Whole Party. We will celebrate with some family and friends and anyone who cares to join us. We will celebrate what is true for us today without the false reassurance that the same will be true after we can afford it. And during those ten glorious days, we will ride roller coasters and merry-go-rounds and the tower of terror and Dumbo the flying elephant and whatever else we fancy (and height requirements allow) with our baby angels. We will celebrate in honor of all the angels in our lives and in memory of the angels who have touched our lives.
Until then, I'd better get back to the board games. Happy Holidays to all of you and may your New Year be filled with peace and joy and find you happy, healthy and whole.
Karen Morrison
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