This Christmas Season

I wasn't going to put up a tree this year. My heart wasn't in it. I wasn't going to put out lights. My heart wasn't in it.  The "Christmas Spirit" seemed to be residing somewhere else. I used to "go all out" at Christmas. Lights outside and in. Christmas decorations in every corner. I even tried the Elf on the Shelf shenanigans when the girls were both in high school. "Really, Mom?" was the response.  Travis and I have been divorced for several years, and in that time the girls have been away at Christmas many times. I  thought...... hoped that my mind would make me believe that this year was like many in the past. But my heart knows different. I was walking around outside one day thinking of my lack of spirit - thinking of Lizzie and how I miss her - feeling generally pitiful. Then I began thinking of another child born, on Christmas, who died. I began thinking that Christmas is not a time to feel sad or depressed for those we have lost, but happy for the One we have found. Christmas is a time to remember the One who lived his life and died for all of us to be able to live our lives and one day live again with Him. So, I bought a new fake tree (allergies), new decorations, and put up a Christmas tree. I  decorated the outside with lights.
Did I go "all out" as in the past? No. Part of the reason is that I just don't want to have to put it all away when the time comes. (residual bah humbug?).......However, the totes are still sitting in my living room It may happen between now and tomorrow. Who knows?
I miss Lizzie so very much. Christmas celebrations will be different from now on, but the reason for the celebration is the same as it has been for thousands of years. Yes, we will mourn the loss of our loved ones. But we must remember  the One who was born on Christmas. The One who died so that we may one day live in Heaven.

I think I need more lights!

Part 5

I feel like I am doubling back on myself. I begin telling Lizzie's story and then realize I have already written what I am about to write. I think that's one of my biggest fears: as time passes, I begin to get things mixed up or I begin to forget. I'm terrified of forgetting. I don't want to forget. I am also afraid that others will forget. I want Lizzie to be remembered for the inspiration that she was. ( I was just told that these posts are really long. I apologize. There is just so much to tell!)
There we were at Texas Children's in Houston. Poor Lizzie. She was so drugged that she kept forgetting her birthday. We had a little party for her and she opened her gifts. Then a few days later she would tell someone "it's about to be my birthday." We would have to remind her that her birthday had already passed. She would become sad and ask what she got. We would go through all the gifts and tell her who they were from. Then a day or so would pass and we would repeat the process. Dr. Thompson arranged with UT for Lizzie to receive a certificate of completion. The nurses and doctors decorated her room and had a ceremony. (Dr. Thompson is a Longhorn fan.) Guests were invited and speeches made. Everyone thought that this was the end. Remedies for her pain were discussed and dismissed. You see, there is as thin membrane that surrounds the lungs. That's were the fluid was building up. The lining was "sticking" to her lung and that was what was causing pain. A surgery was suggested in which they go in and "scrape" the lining. However, it was discovered that is wasn't fluid, it was tumors. Surgery was not an option. Her doctors told us this was it. Her body was shutting down. Family and friends were called in. Kyle, her best friend, had to contact her other friends. I can't imagine what that was like for a young man. Too be so young and tasked with such a job. The decision was made to bring Lizzie home on hospice. Dr. Thompson told us on a later visit that when we left he believed that it was the last time he would see Lizzie.  She arrived here and we were introduced to Amber and Kevin from Hospice in the Pines - two of the most caring and uplifting people I have ever had the pleasure to meet. I couldn't have asked for better hospice nurses. Coston Elementary, my school, arranged and carried out a spaghetti supper along with a raffle. T-shirts were sold. The annual Panther Bowl was turned into Lizzie Bowl. The Lufkin Panther band spelled out "Lizzie" on the field. The entire community gathered around Lizzie in support. Little by little Lizzie improved. One thing I noticed was that when Lizzie had enough of something, she worked to make it better. She had enough of being tethered to the chest pump. She had enough of the blood clot. She was done being stuck in her bedroom. She wanted out. I remember one day sitting with her in her room. She turned to me with tears in her eyes and said she didn't want to live like this. That day I got  my husband to build two ramps for our house so we could get Lizzie from her bedroom to the living room. It was a monumental task. We had to not only transport Lizzie in a wheelchair, but had to pull along the IV stand and the chest pump.  Friends would come over constantly to watch TV or play the guitar and sing. We basically enacted an "open door" policy. We told her friends to just come on in - don't bother knocking. The Lizzie train worked for a little while until she had enough. Lizzie did not like being dependent on others. When it became evident that the chest pump had done it's job, it was turned off and disconnected. The next thing I know is she is walking!  By the end of the month, Lizzie was attending her sister Alex's graduation! She was off - not running - but on her way. She was removed from hospice care so that the blood clot could be treated. Boy oh boy she hated the treatment for the blood clot! The next step was to remove the pic line and the tube that connected the chest pump.  However, over the course of the summer, she began to deteriorate.  At the end of the summer, Lizzie's dad came to pick her up to spend some time with him. That definitely was hard for me. But, I thought spending time on the coast would be good for her. I imagined her sitting on the deck or beach just soaking up some vitamin D. But this was not to be. The ammonia level was building up in her body. She was admitted into the hospital in Corpus Christie. The ammonia levels affected her life processes. She had to be fed through a tube in her nose. She didn't recognize people. She couldn't feed herself. She couldn't drink through a straw. The medication that was given to lower the ammonia level gave her serious problems. (I won't go into it. Lizzie would be embarrassed.) But, it was working. One day, she reached up, grabbed the tube, and began pulling it out. I knew she would be getting better. She had enough. Little by little she began to first say one or two words, then sentences. Again, the decision was for Lizzie to return home on hospice. The problem was how to transport her. Insurance would not provide an ambulance and  I knew she would not make that long drive in a car. Her dad happens to be a life-flight pilot. The company he works for agreed to transport her to Lufkin. She came home via helicopter and on hospice. I waited on the roof and watched the helicopter land. I walked over and grabbed her hand. Lizzie turned her head and said "Mommy!" I asked her how the trip was. She said there was a lot of scenery. That was our first introduction to the wonderful people at in-patient hospice. It's funny to think back now how she didn't want to stay in the hospital. We assured her it was just for a short time to get her stable. It's funny because that became her favorite place to be! I can remember Amber and Kevin, her hospice nurses from before, being shocked at how her health had declined.  When she came home, my mom and my aunt took turns caring for Lizzie during the day since I had to work.  At some point, Lizzie had enough. She improved again. But, when you look back at pictures, you can see the effect the disease had on her body. Cancer is a calorie sucking disease. Lizzie ate and ate, but the weight fell off. She was unhappy. She hated being cared for. She hated depending on others. She absolutely hated the medicine she had to take to keep the ammonia from building again. She made the decision to stop taking it. She told me that it did no good to be able to get around if she couldn't leave the vicinity of a bathroom. She was frustrated. She then entered into "Respite Care" at in-patient hospice. Geesh! You would have thought she was the Queen of England! She was the little queen bee of hospice. She loved the nurses there and the nurses loved her. They would sit and discuss movies or music. They would take her on a spin around the hospital.  Basically, whatever Lizzie wanted she received. However, respite is short term. She returned home and was unhappy again.  That's when we were introduced to The Joseph House. The Joseph House is a end-o-life care facility in which the residents have their own little apartment with around the clock care. It's a beautiful facility. Lizzie moved in and made friends again. I think this was around November. We fell into a routine. I would work during the day and go stay with Lizzie at night. She had a constant list of visitors especially Kelly Adams-Williams and there became Queen of England again. She would visit the other tenants, sitting beside them and talking about whatever came to mind. The caregivers set up a cot in the office for when Lizzie went to visit and would fall asleep. An arm chair was requested so that she had a comfortable place to sit on those visits. Her friends Kaitlyn and Walker McWilliams lived just down the street from The Joseph House. Lizzie had no problem calling them and asking in a round-about way if Kaitlyn was making her favorite dish. It didn't matter what was on the menu that night. It was now Lizzie's favorite dish and taxi service to their house for dinner. There's a story about sweet potatoes and The Joseph House that I won't tell here....and naked cherub angels.
 There were a couple more visits to in-patient care - each time improvements made which is ironic considering the purpose of in-patient care. On one of those visits - exactly one year ago today (11/26) she was at in-patient. They released her and we went immediately to the other hospital to see her nephew born.  We rolled into the delivery room just minutes before Sawyer was born. I remember the huge smile on her face as she remarked "This is amazing!" No, we weren't in the delivery room exactly when Sawyer was born. Lizzie decided that she didn't want to stay for that. On another visit, Amber came and got her, rolled her across the street, and we walked in the Memory Walk. She literally lit up and came alive at in-patient hospice.
 But her health was continually failing and so were her spirits. Christmas came and she spent it sleeping. Again so disappointed because she missed the opening of presents. The ammonia was building and affecting her body. She had difficulty seeing and  walking. Texting and using the computer were almost impossible. Her hands shook so badly.  I think that was really hard on her - seeing life continue but not really being a part of it. I compare it to being in no man's land. She was with us but not really. Her friends were going on with their lives - lives that she had been so much a part of but not any more. They were going and doing and she couldn't. They had conversations that Lizzie no longer could participate in. She was an outsider to a life that had once been so important to her.

Spiders

I'm not a big fan of spiders. I know they are beneficial. I can examine a spider web and wonder at the intricacies of the design. When I taught science, we didn't kill the spiders. We recued them to fulfill their purpose.  But I just don't like them. I can deal with them, though, when I am prepared. If I see one across the room or am called to take care of one, I can deal. It's the unexpected ones that give me the chills: the ones that drop unexpectedly from above or suddenly appear crawling on your shoulder. Because I recognize this fear, I avoid spelunking in dark caves, exploring dilapidated houses, or walking with someone who likes to play practical jokes.   Grief is like that. I received a questionnaire the other day from Hospice in the Pines. It basically asked a series of questions to evaluate how I am doing. Some examples:
1. difficulty sleeping = only when there's a symphony of snoring
2. little appetite = just the opposite. I can always eat.
3. have not been able to return to work = nope. I find comfort in my job.
4. avoid going places or doing activities I used to go with Lizzie = never. I love remembering.
But then there's
5. lacking in energy = yes
6. attending to Lizzie's personal belongings = haven't done it yet.
7. possibly depressed: don't seem myself anymore = yes
8. allowing myself to really let go and cry = here's where the spiders come in
I can talk about Lizzie all day long. I have no problem with providing anecdotes of life with Lizzie. I am prepared for those. I have control over the situation. It's those times when I'm not prepared that get me and I have a hard time dealing. We were asked to remember the first day we took our own child to kindergarten during an inservice for school. I had no idea we were going to be asked to recall. All of the sudden, an image of Lizzie popped into my head. Lizzie went to kindergarten at the same school at which I taught. She would run errands for her teacher and would always take the long way back to class so she could stroll by my room. I can still see her looking into my room as she passed - walking very slowly - with this cute little smile on her face. I would stop my lesson and run to the door to give her a quick hug and tell her that I loved her. Grief was a spider that fell from above. I felt the tears well. I felt the pain in my chest. And when my dear friend looked at me with sympathy in her eyes, I lost it.  I've learned to avoid certain situations. Even though I read The Fault in Our Stars (at Lizzie's insistence), I will not go see the movie. I refuse to watch The Red Band Society that is about to show on TV or the show where the girl finds our she has leukemia. Certain commercials on TV or the radio get hastily changed. So how am I doing? Not sure. I miss Lizzie so very much. Words cannot adequately express the depth of my missing her. It's in my bones. It's in every breath I take. It's in my core. I know letting grief out in a good cry can be beneficial. As long as I avoid those dark caves and scary houses, I have control over my grief. As long as grief doesn't drop from above like a handfuls of daddy longlegs, I'm ok..... I guess. I don't know. Likening grief to 8-legged creatures is kind of weird.....

Testimonies Part 4

So, the next year was a whirlwind. Lizzie was off at college enjoying her life. In the fall, we had family pictures taken. I can still see Alex chasing Lizzie through the trees at St. Cyprian's. I'm not sure what Lizzie did to Alex, but she was sprinting around laughing while Alex chased her.  In December, my mother arranged a trip for Lizzie, Alex, Stephanie (sister), me, and herself to New York City. It was a wonderful trip. Our hotel was fabulous and only a few blocks from Time Square. Needless to say we walked around in a state of awe. Imagine 5 small-town East Texas women loose in the big city constantly looking up. And it snowed! We visited Rockefeller Center and saw the famed Christmas tree and all the ice skaters. Someone was filming at the time, but we couldn't tell who. We made it to the top of  The Empire State Building, roamed  The Metropolitan Museum of Art and the Museum of Modern Art. I didn't care that much for modern art, but the MET was awe-inspiring. We walked central park - rode a horse-drawn carriage through the park, and strolled down 5th Avenue. We even got to see Wicked on Broadway! The store fronts were decorated for Christmas and were amazing. I can remember being stuck in the middle of my mom and Stephanie and the two girls. I was trying to stay with Mom and my sister, but also trying to keep an eye on two teenagers blasting their way through crowded streets. That February was a trip of a lifetime to Rome, Italy through the Make A Wish foundation, Alpha Chi Omega sorority at SFA, and an anonymous benefactor from Huntington. We had been working on this trip for an entire year. It came to a point where Lizzie's oncologist contacted Make A Wish and said that if she was going to be able to go, it needed to happen soon. At that time, Lizzie was still full of energy and I'm not sure if the gravity of her condition registered. All five of us were able to go: Ricky, myself, Lizzie, Alex, and Chrissii. The flight over was rather uneventful.....except the in-flight movie was TAKEN! Yikes! It was over night, so we slept. We weren't so lucky on the way back. Our hotel was very nice - not far from the Coliseum. The three girls stayed in one room. We could hear them at night laughing and giggling and cutting up. Our first night there we ate at......Hard Rock Rome. BUT, while roaming around after dinner, we stumbled upon The Trevi Fountain. This quaint shopping area became our stomping grounds. Make A Wish did an excellent job of planning  our stay. We were able to see The Coliseum, The Vatican, roam the city, shop, and take a train ride to Florence to see Michelangelo's David. (He's huge!) We went on a walking tour which was very interesting. Our guide showed us where you can actually see where Rome is built upon Rome! She told us that The Coliseum is not in ruins due to age, but parts were actually taken to build new parts of Rome. When building the Vatican, bronze was taken from other structures such as The Pantheon to be used. We saw the most magnificent fountains and statues - all with truly interesting back stories. We were there at the time when the new pope was being decided upon. It was interesting to look each day to see if the color of smoke changed. We also learned that when Romans are taught to drive, they are taught to "fill the empty spaces." This idea created many harrowing taxi rides for us! The girls had a blast, and everyone there was so friendly! At first, Ricky and I were like secret service men standing outside of stores so that the girls could shop. After a day or so, we felt comfortable enough to give the girls some space. Thinking back I'm literally at a loss for words. In February Lizzie was buzzing around Rome. Just a couple of short months later she was tired, sick, and out of breath. As I've said before, Alex and I visited Lizzie for Easter. She was feeling drained. In May, Ricky and I visit to help move most of her things back to Lufkin. She had no energy. A week later, she was in the hospital. It all came crashing down so quickly. She never really recovered from the chest pump.

1 More

Mission trip to Africa or South America (maybe even both!!)
Skydive Judy Winger
Bungee Jump
See an alligator in the wild  Alex and Mom - Spring Break 2014 and Susan Berquist
Tickle a penguin
Go to a Katy Perry concert
Meet Ryan Gosling
Meet Joseph Gordon- Levitt
Go to Europe
Visit New York during Christmas time
 Go scuba diving Kelly Adams-Williams and Scott Williams
Adopt (more like sponsor) an orphan    Me (Dianne)
Get a tattoo
Go on a helicopter ride over Austin at night
Cheesy I know, but get my first kiss
Ride in a hot air balloon
Run a 5k (for those of you who don't know me, that's a big deal because I DO NOT run)
Take dance classes again
Go paragliding
Ride a segway
See floating lanterns like in the movie Tangled
Crowd surf
Be in a professional photoshoot
Go to a filming of So You Think You Can Dance
Watch a meteor shower
Jump off a waterfall
Go rock climbing
Play paintball
Watch sea turtles hatch
Pet a giraffe
Hold a monkey
Visit a glow worm cave
Get a hot stone massage Nisha George
Swim in Blue Hole (She didn't get to swim in the Blue Hole, but was able to visit it! Thank you Fran and Susie!)
Learn to play the piano
Visit a walk through aquarium

 

 

 

                This wrist band was worn by Kelly and Scott on their scuba diving trip.

 

                                                        She's wearing a Lizzie shirt!

 

Nisha says she is grateful for Lizzie's list that gets her to try things out of her comfort zone!

 

About the Lizzie Challenge

About the Lizzie Challenge - please send updates and pics of bucket list items that you specifically chose to do in memory of Lizzie. Example - Alex and I chose to go on the swamp tour because Lizzie wanted to see alligators in the wild. (We tried to cross off the tickle a penguin, but couldn't get tickets to the penguin adventure.)  Chrissii, Kyle, and Alex are planning a sky diving adventure in honor of Lizzie. I'm sorry if I have offended anyone. I absolutely love seeing the wild adventures you guys have had (maybe a tad jealous too!), but I really intended for people to look at her list then decide what adventure to undertake and dedicate that experience in order to Live Like Lizzie.

Testimonies Part 3

The next step was surgery. Lizzie had lost so much weight with the chemo that her surgeon was a little concerned. She was instructed to eat any and everything that would put on the pounds - which, except for ice cream, was hard for Lizzie. She was always a very healthy eater: salads, grilled chicken, some pasta but not a lot. She tried though. The surgery went well. Two-thirds of her liver was removed, her gallbladder, the tumors previously seen on the MRI and any other spots the surgeon felt could possibly be tumors. To say she had a painful recovery would not be giving a clear picture of the pain. She was miserable. It was one of the few times she seemed depressed. Simple functions such as sitting up, getting up, or  coughing  were extremely painful. I think Lizzie's greatest fear was not being able to be a part of life. That sheer determination to be living every moment possible is what gave her strength to bounce back. And bounce back she did.   Her first goal after recovering from the surgery was to get that portacath removed. I guess it was symbolic of being held back from doing what she wanted to do.  And college? She couldn't wait to go! Alex and I took Lizzie to her freshman orientation. Well, not really orientation - more like Fish Camp for any Aggies that might be reading this. I think it was called Gone to Texas. We stayed at a hotel downtown the night before. Lizzie wanted to go the campus - "but don't worry, Mom, it's just up the road". No, it wasn't. It was 10 blocks up the road. But we walked......uphill. She was literally skipping and dancing when we reached campus. Her eyes were as big as saucers. She couldn't contain her pure happiness that she was now a part of UT. We strolled through campus to "the drag" and ate at a pizza place the girls love. We tried to get a cab back to the hotel, but no luck. So we began our trek back towards downtown..... at least it was downhill this time. At one point these guys started following us. I would turn around every once in a while to look them straight in the eye. (supposedly wards off attackers). Finally I tell the girls we were going to take a left at the next corner. The guys did too. At the next stoplight we stop and all 5 are standing there awkwardly. Then one of the boys asked, "Is this 6th street?". The three of us started laughing and told the boys that they had a couple more blocks to go and pointed them in the right direction. The next day we go to drop Lizzie off. . You would have thought someone placed a hot poker in the seat the way she popped out of the car. In a blink of an eye she had grabbed her suitcase, headed towards the check-in desk, and turned  briefly to wave goodbye. And that was it. Lizzie was in college. You know, Lizzie liked to talk about the "perks" of cancer. One such perk was that it got her into the dorm of her choice. Dr. Thompson made sure of that. And her roommate? What a dream! Lizzie and Jennifer were two peas in a pod. And the little group that was formed was a blessing. Most of the group were classmates from high school, but Jennifer and Jeff were welcome additions. They were a tight-knit group and I am so grateful for each of them. Lizzie loved being in college. If she could have bled burnt orange, she would have. She loved yogurt at midnight. She loved volleyball at midnight. She loved the kayaking trips and the weekend excursions. She loved the live music scene and the cultural activities. She loved her part-time job and the people she worked with. In November Lizzie had her appointment with Dr. Thompson for scans..... and the scans showed tumor growth again. I think that was the point Lizzie decided to let the disease take its course. She was still open to new medicines, but absolutely no surgery. So, Lizzie develops her bucket list and began crossing off wishes......

Do It for Lizzie!

Below is Lizzie's Bucket List. I think it would be really neat, fun, cool, and interesting to try to complete her bucket list. So, here's the challenge:
Look at the things she was not able to do. Pick one or two or more and do them! Come back to this post and comment on the list item completed and when and I will update her list. I would like to include a picture too if possible. I'm not sure how to do that unless you send it to me through my email. (dianneschmidt2017@gmail.com)

Mission trip to Africa or South America (maybe even both!!)
Skydive
Bungee Jump
See an alligator in the wild  Alex and Mom - Spring Break 2014
Tickle a penguin
Go to a Katy Perry concert
Meet Ryan Gosling
Meet Joseph Gordon- Levitt
Go to Europe
Visit New York during Christmas time
Go scuba diving
Adopt (more like sponsor) an orphan
Get a tattoo
Go on a helicopter ride over Austin at night
Cheesy I know, but get my first kiss
Ride in a hot air balloon
Run a 5k (for those of you who don't know me, that's a big deal because I DO NOT run)
Take dance classes again
Go paragliding
Ride a segway
See floating lanterns like in the movie Tangled
Crowd surf
Be in a professional photoshoot
Go to a filming of So You Think You Can Dance
Watch a meteor shower
Jump off a waterfall
Go rock climbing
Play paintball
Watch sea turtles hatch
Pet a giraffe
Hold a monkey
Visit a glow worm cave
Get a hot stone massage
Swim in Blue Hole (She didn't get to swim in the Blue Hole, but was able to visit it! Thank you Fran and Susie!)
Learn to play the piano
Visit a walk through aquarium

                                                               Spring Break 2014

                                                        Lizzie at the Blue Hole

May 9

Today was Lizzie's birthday. She would have been 20 years old. We have a tradition in my family that when it's one of our birthdays, we go out to eat. The birthday person gets to choose where. Afterwards, we usually head back to my parents house for desert. Tonight was no different except for one thing. Lizzie was not here. After dinner and desert, we each wrote on a balloon and release it. (I know: bad for the environment.)There were purple balloons (her favorite color) and orange (for UT) So, I guess now we have a new tradition.

Testimonies Part 2

So, we found out Lizzie had cancer. If it wasn't the very next day, it was the day after that when our first appointment with Texas Children's Hospital was scheduled. I remember how impressed we were with the facilities. We had never seen such a child-friendly space. The fun house mirrors in the elevators entertained us on our ride up to the 14th floor. The bright colors and volunteers greeted us as we entered what would become our new normal. We thought is was so totally awesome that there were people who worked with the kids on art projects, and sang songs, and put on puppet shows. There's a library and even a game room. Then we meet (drum roll, please) Dr. Thompson and Dr. Wendy. Love them both! Both doctors did an excellent job of explaining Lizzie's type of cancer. And they were honest about the survival rate. The ideal situation is to catch it before it spreads. The ideal situation is to cut the tumor out before it has a chance to move to other parts of the body then follow up with chemo. So, we meet with the surgeon. He was very positive about the end results - very reassuring. Lizzie had all of the tests needed in order for the surgeon to do the best possible job......except, those tests revealed that the cancer had spread. Lizzie was Stage 4. So.....the plan changes. The new plan is for Lizzie to go through 4 rounds of chemo to make sure that after the surgery what little cells that might remain are knocked out. Her protocol was 1 week of three different types of chemo, two weeks off with an oral chemo then repeat.  Being treated at Texas Children's is different than any other place on the planet. Because the focus is children, every nurse, LVN, CPA, and doctor have the most understanding and accommodating demeanor. No question is out of bounds. No request is too much. And when you are there as much as we were, they become family. The first step was the portocath. This device is surgically implanted under the skin. It allows the IV medicine to enter without having to put an IV line in every time. Lizzie hated it. But, not as much as the chemo. The first medicine was Cisplatin. Side effect = intense nausea and vomitting. The second was Doxorubicin. Side effect = everything turns red from your spit to your urine and mouth sores. The third was PEG- Figratim. Side effect = aching or pain in the bones. The oral chemo was Sorafenib. Side effect = hair loss. But, through all of this, we were still hopeful. Continuing school was not in the cards. Since Lizzie had enough credits, she was allowed to graduate early from school. However, she missed her senior year. She missed doing all the traditional things seniors do. She was in the hospital on her 18th birthday. It broke my heart. It's hard watching your child watch life from the outside. She would get so frustrated that she was unable to enjoy life. We were invited to go to the Faust Ranch in south Texas. Lizzie develops a virus and is taken to the ER. We fly back to Houston were she is admitted into TCH. The night before prom we are back at TCH. She's severely dehydrated. However, everyone from the ER to the 9th floor made it their personal goal to have her out in time to go to her prom. They did. They had the bags of fluid lined up back to back so that when one emptied, the next one was ready to go. At 1:00, she was released. We drive over to the Galleria where she gets her makeup applied. We run home in time for her to change into her prom dress and go. Graduation was the same thing. She ends up in the hospital but through the efforts of all, she made it for her graduation. Thinking back, I guess it was all the times Lizzie was on the outside, missing life, that made the light in her eyes shine extra bright when she was able to participate. I was told that at Project Celebration Lizzie was tireless. She climbed the rock wall and raced coolers. She did it all.

Graduation

 

Faust Ranch

Prom 

Regret and Guilt

“Guilt is regret for what we’ve done. Regret is guilt for what we didn’t do.” I have been thinking a lot about regret and guilt lately. The two go hand-in-hand. You really have to be careful not to dwell too long on either. And, you have to be careful about your relationships with others. I have found myself feeling both regretful and guilty over what I didn't do with Lizzie or what I did do but shouldn't have. I want to make excuses. I want to blame someone else. I want to point out the flaws in others so I don't feel so badly. What I have found is blaming others or highlighting their flaws does nothing to remove my personal regret or guilt. It just destroys that relationship with the other person. In the loss of a loved one - a dear friend, a sister, a confidant - we hurt. The pain can become so unbearable that we want others to hurt just a badly. (insert Steel Magnolias reference.) We all want our own Wheezer to hit. And, as lamented in country music, misery loves company. Or does it? Does misery love company, or does the misery make the company miserable? The problem with misery loving company is that the misery just might run the company off. When we choose to blame others - choose to tell others where they have failed - we are really trying to assuage our own guilt. We must recognize what we are doing or risk tainting the memory of our loved one. I think back over the past couple of years, and there's a lot of "should of, would of, could of's". Who am I kidding? I can look back over the past 19 years and see the "should of, would of, could of's" Do I sit with my misery and wallow in my guilt, or do I make a conscious effort to make different decisions? Do I continue to blame others, or do I treasure my friendships? I choose to make different decisions. I choose to treasure my friendships. I choose to understand that my regret and my guilt are just that - mine. Blaming someone else will do nothing to ease the pain.

Eyes to See. Ears to Hear. A Heart to Listen

As far as I know I cannot be hypnotized. I tried it once at a comedy club in Houston. I pretended that I was. I actually got up on stage and pretended to do all the things the guy was saying to do.....until I got bored and sat down. I'd like to think that it was because I have such a strong mind. But more than likely the guy was a fake and the other people on stage were just acting too. I've been thinking a lot about faith lately. I'm not saying that I question God's existence. I haven't gotten mad at God. I haven't screamed at Him, shook my fists at Heaven, stomped my feet in protest. Lizzie always said that she had prayed for a testimony. She said that she felt she couldn't be a strong witness for God because she had a good life. So, she prayed. And she was given a testimony. There were so many times that we talked about her illness. Very, very, very rarely did Lizzie break down. Once when she was receiving chemo she asked me point blank what if it didn't work. I can still see her looking out the window of TX Children's. The room was on the side that faces Holcombe. She had this look on her face. It was one of the few times that I saw the little girl beneath the brave warrior. I always believed the chemo would work. I could visualize the chemicals searching out the tumors like liquid submarines and attacking. I just kept telling her that it had to be working. It killed her hair - it's got to kill those tumors. The times I would question why she was given this particular burden, Lizzie would reply, "Cause God knows I am strong enough to handle it. No offense, Mom, but if you had gotten cancer, you'd be a basket case." I envied her faith: So total and unwavering. Which brings me - finally - to my point. I think I am deaf. In Sunday School last Sunday we talked of knowing the authentic voice from the fake. I told my sister that I have no problem telling the difference. It's just that I am not hearing any voices. I know He is here. I see Him in the hug from a friend just when I needed it. I see Him in a community that rallied together to support my child. I see Him in the notes and letters that were sent to Lizzie and on her facebook page. I see Him in the faith that others have in Him. I went to see God' Not Dead tonight. I believe the arguments that the main character made. How can the diversity of life be a result of evolution? He's here. I know he is. I just want to hear His voice. Lizzie was right. I would have been a basket case.

Weepy

I have been so weepy this week. Little things just make me start to tear up. I saw a lady in Brookshire Bros the other day wearing a "Be the Change" Lizzie shirt. I started to cry. I have been going through photos to find some for the Panther Pride spring show this weekend, and I cry. I looked at pictures from our New York trip and realized it was just a year ago. The same with the photos from Italy. Then I came across a couple of pictures from last Easter. Alex and I were headed to Houston that Saturday to find her a dress for graduation. Lizzie had told us that she wasn't coming home - she had to study for exams. We hadn't even made it to Livingston when Lizzie called and started crying. She was so homesick. Alex and I did a U-turn and headed back to Lufkin. We threw clothes in a bag and headed to Austin. Alex stayed with Lizzie in the dorm and I found a hotel room. I think that might have been the weekend that we found the Reeds and had dinner on South Congress. It was nice. After dinner we walked down the street and bought cupcakes and wandered around a candy store that sold anything you wanted in bacon flavor. Our plan was to go to a service that Sunday. I went to pick up the girls and Lizzie wasn't feeling well. Her oncologist from Texas Children's happened to be in town that weekend, and we were going to meet him and his family for the service. Lizzie told him we weren't going. She told him she wasn't feeling well. He kept trying to talk Lizzie into letting him drop by an do a quick assessment. She declined. She rallied some and we went to a cute little spot downtown for breakfast. We spent a very pleasant afternoon shopping downtown - just casually walking around and having a nice "girls' time." When it was time to leave, Lizzie wasn't ready to let us go. We weren't ready to go either, but we had to. I absolutely hated that I had to leave her. A couple of weekends later, Ricky and I headed to Austin on a Saturday to move the majority of Lizzie's stuff home. We got into town that evening. Lizzie was going to some concert with friends so we met a high school friend of Ricky's and spent the evening listening to live music. Lizzie called and told us that she didn't go with her friends. She was having some trouble breathing (she had already had her lung drained once). We made our plans for packing her stuff. That Sunday, we got all the big stuff packed up and loaded on the truck. We were about to take Lizzie to lunch when she told us that she didn't feel that she would be able to make it. She told us that she needed to go lie down and rest. I had to leave her again. I think it was that very next week - maybe even that Monday when she called and told me that she was headed to Dell Children's at Dr. Thompson's insistence. Her breathing was very labored. The following in an exerpt from her best friend Kyle Reed's eulogy: Lizzie’s time at the university ended one night before finals when David and I took her to the emergency room because she was having trouble breathing. Although we drove her to the hospital, she walked right in by herself without us, saying that she was only going to have a checkup and a few scans. She never came back. Around 10 PM she calls and tells me they were admitting her into the hospital and she was going into surgery for a chest tube. I called my sister. We packed our bags and headed to Austin. We got there around 1 AM. We slept in the ER room with Lizzie. We were there 2 more nights. I remember because Steph and I stayed in two different hotels. The decision was then made to transport Lizzie to TX Children's in Houston. (Lizzie's choice). The tricky part was that we had to wait on a room to open up on the oncology floor. When it did, we had to be ready to go. That day, Stephanie and I packed the rest of Lizzie's things from her dorm. So, Steph and I again stayed with Lizzie. Around midnight, we got the green light. Lizzie was transported by ambulance, and Steph and I followed. We got to Houston around 3 or 4 AM. Dog tired.....and slept in the room with Lizzie. Now, people, you may not realize what a rarity it was for me to sleep in the room with my child - with either of the girls. Lizzie was adamant that I not stay with her because I snore. I can't remember how long Lizzie was there. Long enough for her to develop a blood clot. Long enough for her doctor's to tell us to gather the family. Long enough for the outlook to be only a couple of weeks. As many of you know, Lizzie came home on hospice. Lizzie came home to bounce back the first of several times.

Testimonies Part 1

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?

How are you doing?

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.

This is Lizzie's Mom

I could not just let Lizzie's blog drift quietly off into cybersunset. So, for a little while, I will continue to post through Lizzie's blog. Maybe it will become as therapeutic for me as it was for Lizzie.