Why I Write

In an article entitled "Why I Write," Anna Quindlen reflects, "Writing can make pain tolerable, confusion clearer, and the self stronger."  I teach this to my students. I believe it. Today I write in an attempt to make confusion clearer.  I don't know if it will work, I don't know if I should be doing it here, so publicly; I am a fairly private person. (I'm really open with people I am close to, so I am sure you are perplexed by that comment.) Irregardless, today I write.  I will not proofread. I will not contemplate each word or the syntax of each sentence. I will just write. Testing out your own lectures is probably a good thing. ??? My emotions are mixed, although I feel that they shouldn't be.  There was a glimmer of hope last Thursday with Timmie's blood work.  ANCs : 100.  (ANC = absolute neutrophil count).  ANCs have been 0 for over two months. I, along with doctors and nurses, watched that number anxiously, each and every day for over 4 weeks at Primary Children's. Then, Thursday, ANCs 100. She needs 1500, but 100 is something, right?  I call it a glimmer of hope, but if you combine it with some intimate feelings that I have had the past week or so regarding our hope and prayers for her therapy to work, along with some interesting and more than coincidental timing, I should probably be calling it a big, fat ray of hope. I felt more peace and happiness on Thursday than I have... well... ever. You can imagine our prayers of gratitude and our feelings of relief. So how is that those overwhelming feelings of hope and peace can't just last. I feel like they should be able to last. Always. Why is it that everything has to be such a rollercoaster?  Why is it that peace and solace have to be so rudely interrupted by fear, doubt, pain, and confusion?  I am sure there are answers to these questions.  Despite moments of reassurance and encouragement, my heart still swells with sorrow after a few days of watching her suffer. One ailment will resolve, and another will appear.  One pain will subside, and another take its place.  One worry leaves our anxious hearts, and another enters in a blink of an eye. I usually take time to ponder... look for answers.  But today... I just write. Sometimes because of her maturity and her courage, we forget that she is a 16 year old girl. She wants to walk, run, laugh, spend time with her friends.  She wants to grab her keys, hop in her car and head somewhere... anywhere. There is a pang of anguish in her heart when she stops, ever so briefly, and thinks about what she may be missing.  How long will it last?  "I don't want to miss my junior year," she said to me tearfully the other night. She told me last night that she doesn't want to be the girl that people feel like they should "visit."  She misses being normal. She misses people simply wanting to hang out with her because she is fun and they want to be with her.  I would have never guessed something as simple as the word "visit" could make her feel... sad. Every so often I am reminded that she is simply a 16 year old girl wanting to feel... normal. Normal. What does that mean anymore?  There are so many people who deal with so many different struggles, trials.  Some that seem intolerable to be borne. How many people look out at the world around them and wish that something about their lives could be more... "normal."  I am starting to think that normal doesn't exist.  That we all have our own kind of normal.  We are forced to create it for ourselves.  Should it be  normal that my 6 year old seems the most happy when he can help prepare and deliver medicines to his 16 year old sister? Should he be exposed to the type of suffering he has seen at such a young age?  Please don't mistake my heartache for a belief that I am the only one who has suffered or who ever will. It is the exact opposite.  This experience with sorrow and suffering has opened my eyes to the immeasurable amount of suffering on this earth.  It is everywhere.  As deep as my sorrow runs, there are people every minute of every day dealing with more...so much more.  What part does suffering and sorrow play in this life? Why is it so important? Is it essential? Yes, there are answers.  But the questions seem to be releasing some sort of pent up emotion that I can't really describe.  OH! And how is it that people can be so overwhelmingly selfless and kind? I am daily astonished by the willingness of apparently everyone to help me. To help my family. That is the most humbling thing I have ever experienced. It constantly reminds me that I need to be better, do more. Why in a world filled with such goodness, does ugliness and evil still exist?  How can some people love so much and others be consumed with hate? I had almost forgotten that hate existed because we have been enveloped in love from every angle.  But then, when you least expect it, hate rears its ugly head. How could someone, anyone, look at my suffering daughter and see nothing more than a skin color that is different from their own. I, briefly, had forgotten that something that ugly could exist. What do I resolve?  Perhaps that most of humanity is good, truly good. That most of us do the best we can each and every day to make sense of a complicated world.  That we each have moments of strength and weakness.  That as much as we want to hit that plateau of strength, happiness, peace, humility, righteousness (and just stay there!  shouldn't we be able to stay there once we have discovered it?)  we ultimately slip, stumble and sometimes even fall hard into moments weakness, sadness, even desperation.  I guess that life will never get boring.  There will always be something new to tackle, something different to overcome, something else to learn. In the end, I hope for more good days than bad, more strong moments than weak, more surety than doubt, and more kindness than anger. I hope I can become like those who have given so generously to me. I hope that for me selflessness can become second nature.  I hope that more people can let go of anger and hate and grab hold of peace and love.  As cliche as it sounds, I hope the world can become a better place and I can have a small part in that transformation.

Alone in a Gym with a Ball

So every night I am too tired to update the blog, and I tell myself, "Ok...tomorrow I will do it." But then I just get tired all over again. I decided a quick medical update was better than nothing tonight. She still doesn't have any neutrophils (white blood cells) but no one was expecting to see any for 4-8 weeks from her original ATG treatment three weeks ago. So basically, if she is part of the 60% that responds to immunosuppressive therapy, we should start seeing some white blood cells in 1 to 5 weeks.  Dr. Yost asked her yesterday when she would give us some white blood cells and she confidently replied, "In about a week." If for some reason she doesn't respond (but she will), we will be looking at a bone marrow transplant, most likely in Washington D.C. because of the complexity of the procedure. They would take the 4 out of 6 cord blood match that they found and combine it with a parent half match. We haven't really wrapped our minds around that yet because we are pulling for those white cells to kick in any time now.  She was hospitalized again here in Pocatello last Wednesday through Saturday. She was doing so well in clinic last Tuesday that they weaned her morning dose of steroids. Apparently, her serum sickness was having nothing to do with that. By 6pm Wednesday night she was in excrutiating pain and begging us to take her to the hospital. I had forgotten that I was the only one who has seen her in the heat of her extreme serum sickness attacks. Bo and my parents were devastated, but I knew if we could get her to the hospital we could get her some relief. There is really no way to describe the knots in the pit of my stomach when I see her like that, but the first time I almost threw up. Now I have become a bit more resilient. I tighten up my stomach the way I would if someone were about to punch me in the gut. Then, I focus on getting her the help she needs. Once we got to the hospital, they were able to relieve her pain through IV meds. I drew a huge sigh of relief as I watched her fists unclench, and I heard her loud cries subdue to quiet moans. Moments later though, the nurse took her temperature and she had a fever of 101.9. Bo and I knew the implications immediately: admission for 48 hours, increased IV antibiotics, and prayers that the blood cultures would come back negative. The thought of another infection is almost too much to bear when we recall that the last one not only threatened her leg but her life.  Her fever was down by Thursday morning and the consensus was that the fever was triggered by the flare of serum sickness. There were several other issues...high blood pressure, high cyclosporine level, swollen leg...but my short medical update is getting well, not so short. The doctors handled all the issues and we have been home since Saturday. I know that people who read the blog love Timmie and keep her in their thoughts and prayers, so it is important to add that this week has been a good one. We have been blessed. Today was the best day she has had. She studied and read for the first time since she was hospitalized. The meds have kept her from being able to focus. She was finally able to start her summer AP reading of Huckleberry Finn that some mean old English teacher assigned to torment her future students. Timmie wants so badly to return to school, and she remembers not too long ago when should would begin to dread summer coming to end and having to go back to school.  Now when she hears her friends make the typical complaints about going back, she realizes how much she has taken for granted.  She would give anything to be there with her classmates on the first day.  I watched her today at the student government meeting as we planned the first day assembly.  I knew how much she was hurting and was so impressed with the smile she put on her face as they talked about ideas for skits and entertainment. In addition to reading, visitors, and a student government meeting, she had a great day of physical therapy and made progress with moving her foot and ankle (every day getting just a little closer to walking which she wants to do so badly). Finally, she asked if I would take her to Highland to dribble. This was one of those things that I could tell she needed, so we made it work. I sanitized her ball. I wheeled her into a dark and quiet gym, one that has typically been her second home during the summer, her sanctuary. She wore her mask, and I was worried about the ball hitting the floor and then her hands, so I made her wear the purple medical gloves we brought home from the hospital. Sitting on the edge of her wheel chair with a blue mask covering her face and purple gloves shielding her hands, she began her dribbling drills. The ball hit the floor rhythmically, first the right hand, then the left, then a methodical cross over in front of her wounded leg. It was as if she was involved in a sacred ritual, and for the first time since this all started, since we were forced to become an inseparable pair, I got the unequivocal feeling that I was simply in the way.  I quietly walked to the other corner of the gym and sat softly down on the steps to avoid interrupting what was clearly a private moment. I waited for her to burst into tears as I sat, head bowed, holding back tears of my own. But it didn't happen. She dribbled and dribbled.  She pressed the ball to floor in loud, hard, high, dribbles over her head.  She hit quick low dribbles as she found her focal point on the wall. She looked up at me and smiled and repeated the process.  After about fifteen minutes she yelled over to me, "You ready to go?"  I asked her if she was tired and she told me that she was, but she was as content as I had seen her in months. I really don't know if she will ever have the chance to play another game in that gym, but I can tell you that from watching her tonight, alone in a gym with a ball,  that what I do or don't know is definitely not going to be the determining factor.