Friday, March 7, 2014
I remember when Lizzie and Alex came home from visiting their dad in Hawaii August of 2011. Lizzie was repeatedly throwing up. (I think that's the trip when Lizzie threw up in Alex's purse on the plane.) Said she was sick in Hawaii but blamed motion-sickness. Looking back, she started getting really tired in 11th grade - hair thinning, no energy, sleeping a lot. She was trying to keep up with ther schoolwork and participate in Panther Pride. We both thought maybe she was just over extending herself. So fastforward to her senior year. I had made an appointment with her doctor on a Monday, but she was so terribly sick that I took her to Urgent Doc. There they drew blood and ran some tests which came back with elevated liver levels. I can't remember what they thought was wrong with her, but they were concerned about the liver levels. Took that information to the doctor that Monday, and they ordered more blood tests. This continued for approximatley 7 months. Blood test after blood test. Doctor after doctor. Stomach virus - no, abdominal migraines, strep - one "diagnosis" after another. Me so frustrated with the medical profession that no one could figure out what was wrong with my child and fix her. That fall Mom, sister, Alex, Chrissii, Lizzie, and I went to see "Wicked" in Austin. That entire weekend Lizzie was so sick. I called the on-call nurse at our doctor's office - griping - that this was ridiculous and that they needed to do something. The nurse sais she had strep. Bring her in. She was referred to Texas Children's in Sugarland. Traveled there twice with no answers.In fact, I refused to take her back because the doctor there really didn't examine her or anything - just ordered more blood tests. Finally was referred to a gastrointerologist here. He was about to order more blood tests....again....and I remember getting a little perturbed. I was so concerned about the throwing up - how it affects the esophogus, teeth, gag reflex, etc. And the days missed of school. Lizzie was working so hard to graduate with honors. Missing all those days was stressing her out more. So...the doctor orders a CT, MRI, and endoscopy. Lizzie had the CT first. I watched over the shoulder, never realizing all the click-click-clicks were the measuring of a tumor. The next week Lizzie had the MRI then on to the endoscopy.I had scheduled them on one day to try to not miss yet another day. Lizzie was just coming around from the endoscopy when the doctor came in and told us that her general doctor wanted to see us immediately. Ok, I like all the doctors at the clinic where the girls had been going for years. I can tolerate some more than others. So, when told we were to go to the doctor's, I got a little angry, argumentative, "b.......". Lizzie either had a reaction to the sedative or she was simply throwing up again. I can remember saying "I am not taking my child there to sit in the waiting room for 2 hours so that Dr. So-So can talk to us for 5 minutes." Blah, blah, blah. Gripe gripe, gripe. (not one of my finest moments). But I was told to take Lizzie to the back door (didn't know there was one) and they would let us in and immediately take us to a room. So, we go. Back door - immediately to room - Lizzie lays down and falls asleep. Pillow and blanket brought in. Doctor comes in and breaks the news. Enter Salvador Dali. From that moment on I have felt like I was in some surreal world. I'm sitting there. Staring at the doctor. Lizzie staring at me. Thinking that no, this is not my life. Wanting to cry but not crying because my child needs me to be strong. Lizzie being as calm as can be. Big question - how did this extrememely rare form of cancer find MY CHILD?
Monday, March 3, 2014
One of Lizzie's good friends from Texas Children's Hospital called me today. It was good to hear her voice and to catch up on what's been going on. She was so instrumental in helping Lizzie keep a sense of balance in her life and also to help Lizzie remember she was still a teenage person with teenage wishes and dreams. She really helped Lizzie cope with being a teenager with cancer. Saraben was a good soundingboard for Lizzie. And, as most conversations start these days, it began with Saraben asking, "How are you doing?" I ask myself that question every day. Exactly how am I doing? I go to work every day. We've started extended day, so I teach that 4 days per week. I've primed my livingroom - getting it ready for new color. (I may just leave it white.)I've babysat my grandson twice now and loved every minute of that. Alex and I are about to embark on our New Orleans adventure during Spring Break, and I'm definetley looking forward to that. Life goes on. You wake up every day and go to sleep every night. As long as I am busy, I'm ok. It's the quiet times that get me. Those quiet moments when a memory of Lizzie will drift in. A moment like gleefully opening my teacher friend's girlscout cookies and noticing a box of Lizzie's favorite kind in the bag. Hearing a song on the radio that just so happened to be Lizzie's ringtone for my phone... and wishing it was my phone ringing. Walker spoke of this very well in his eulogy at Lizzie's service. He spoke about when the Apostle Paul asked, "Death, oh Death, where is your sting?" Those stings do get me. It's walking into her room and wanting to see her there. It's a favorite shared show and wanting to talk to her about it. It's missing tucking her in every night - yes, my 19 year old still insisted on being tucked in. It's saying "Goodnight Pumpkin Seed (I called her something different each night). I love you." and hearing her answer "I luuvv you". (She had a way of drawing out the love part). It's remembering her hand reaching out to grasp mine. And, to be honest folks, there are times that I actively reach out for those memories. There are times when I do want to feel the sting that accompanies death. There are times when I call out - screaming inside my head - for Lizzie. I will purposefully wander into her room just so I can feel the tears wellup in my eyes and my chest begin to hurt. I guess what I'm saying is that I don't want to be ok. I will proceed with life. I will enjoy spending time with family and friends. Who knows? Maybe I will go back to school or move to a foreign country. (I keep telling my family I am moving to central America and opening up a fruit stand.) But I don't ever want to be ok with losing Lizzie. I want to continue to feel the sting left by Lizzie's absence. And that is ok.