Lauren Elizabeth Hacker's Journal
Written Sep 19, 2013 10:30amI am writing this so that people don't worry that I am falling into the pits of despair. Actually, far from it. But, there has been so much change going on that I thought I would write about it. This is about me, so if you want to read about Lo, don't be disappointed. It is written to my friends and family that I love, but haven't been able to talk to for so long. It isn't really for all the people circling around and are close here to see this progress. Or, it isn't for people that are uncomfortable with intimate truths and feelings. I will be writing about both. Warning!
So, where are we now? How does a family pick up and move on after our life has been blown apart? The last year was more than I thought I could handle. In one day, everything that I thought was my life, values, etc. exploded. I walked out of a job at noon and instantly made the decision my career was no longer going to be in my focus at all. That was any easy decision at the time. I will get to that later...probably much later. But, in that instant a lot of other things changed too.
Once we realized Lauren's care was going to be an exercise in vigilance and prayer, that is what we did. You don't think about those things. You just move into emergency mode. Then, when that lasts for 6 months, some things fall away. It is part of the process. But, when that ends, it is hard to rebuild your life or even know what your new life is going to be. That is where we are. We are rebuilding. In many ways, literally.
I had a lot of time on my hands in the hospital to think. In fact, probably too much time. I could think all I wanted to, but really could control nothing. This in itself, if you know me very well is not the best combination for me. This caused a lot of change. It also gave me a chance to analyze the life we had as a family and find the truth of whether we were living our values or only going through the motions.
The one thing I realized is that I truly loved my children more than life itself. The feeling in the hospital of utter helplessness did make me turn to God and prayer. This isn't a huge change for me. I didn't talk about it much to people. Maybe this is a big change for people to see that this is a value I had. That is the biggest change of all. I realized I was always the person that people wanted me to be around them, not always who I truly was. It wasn't that I was necessarily phoney. I just didn't reveal aspects of myself that were important to me because I was afraid I wouldn't be accepted. That has changed. I am not in anyone's face about who I am. I just don't care if they see who I am. I actually like that person a lot more than the other version. This isn't some mid-life crisis. It is about acceptance and peace. It is just different shades of blue. It is more subtle than that. But, it does feel good. My faith is one of those aspects I didn't share. I guess I didn't understand it before. I also feel so much closer to my faith and relied on it to preserve our family. It was necessary to surrender to receive. It is also something I am still trying to figure out. I do feel the need to go to mass a lot. Phil is starting to worry that I am going to run off and become a nun or something. But, going to mass calms my mind and releases any anxiety. It takes away the pressures of today or any day and lets me focus on God and living in the this day's moments. It is what I need.
In the hospital, Lauren and I shared a very tight space. Our relationship is forever changed. We know each other on a more intimate level. You think you know your kids. But, when they need to seperate from you and find their own strength to fight for their life, you see them change before your eyes. You also see them and their connection to God seperate from you. It is beautiful and unsettling at the same time. She is a beautiful little person with such a pure heart, just like all of our kids are. What is funny is that I didn't trust my parenting before Lauren got sick. Now I feel more confident. I used to worry about making them good students, successful people, good athletes, etc. I thought if I could help them become good at these things that made them successful in the outside world that I would protect them from the things that would cause them pain. I thought these things would make them happy. Inside my heart, my values for them were to be good people, to serve others, to serve God, to know how to love and be kind. But, our life as a family was not spent doing those things necessarily. We would make attempts at it. We went to mass and we talked to the kids about what things were important. But, we didn't "walk the walk." I assumed some of these values didn't need to be practiced. I assumed they just were. But, that isn't the case. That has changed; that has changed slowly and we still aren't done. We are reinventing what our family spends time doing. It feels really good.
My relationship with Jonathan has changed. I love that kid. He is brilliant and funny, yet so deep and sometimes a bit dark. I worked so hard on making him successful and paid so much attention at his potential because of that incredible mind, but I didn't pay much attention to him. Jonathan up close can be overwhelming. So, I kept him at a distance. Of course, I never realized that. I had to seperate from him too, in order to save Lauren. Jonathan spent much of his time with the Cranes and the Dorans. He was loved by them and I am forever grateful. He spent time with his dad over the 6 months of Lauren's treatment. He spent time up at the hospital with Lauren and me. He and I went out to dinner on a few occasions. But, on the most part, we were seperate. That weighed heavy on my heart. He handled that by being difficult at times. But, that was very hard on him too. We are reconnecting. That is different as well. But, it is awesome. I have learned to really listen to him and hear what is in his heart. I used to judge what came out of his mouth and cut him off and correct him. Now I really want to know what he is thinking and feeling. I wasn't good at hearing him before. I am still learning. But, it sure has caused a change in him. He actually wants to talk to me about stuff.....some of it is so 14 year old boy stuff that I have a hard time translating, but very cool otherwise. It sure takes a lot more of my time. I am doing a lot less.
My relationship with Phil took the biggest hit. We have been married 25 years. I felt like it was ok to let that go a little and just be there for Lauren. It was ok. But, I didn't realize that I had let it go for much longer than that. The modern world does not like people being married. I was so focused on the kids and my work that I wasn't focused on us. I always took it for granted that Phil and I didn't fight or have problems and that everything was fine. We got along great. We had good discussions when we actually made the time to go out to dinner. We got along as a family. We were fine. But, I had stopped sharing what was in my heart a long time ago. I had let things get between us. When my heart was broken wide open in the hospital, I couldn't turn to him to lean on him or even truly talk about the way I was feeling. I was a good Air Force wife. I know how to kick a$$ and take names in a crisis. I could handle a year's worth of deployments and even help the other wives through it. I was tough and independent. That is how we got through all those years of wars and deployments. But, now I was too tough and too independent. I didn't know how to let him in. So, we went to Retrouvaille. It is a Catholic marriage weekend that helps you learn to communicate again and work through tough times. We thought it would be good since our work together and as a family is not over. We need to do this better. I am sure a lot of people wouldn't admit when things aren't great in their marriage. But, I think anyone that has been married for a long time knows it isn't the easiest thing. It also doesn't mean that there is something horribly wrong. He and I don't have any abuse issues or alcoholism or any of the big guns of dysfunction. But, that doesn't mean that it doesn't need to be fixed.
Lastly, I had a strong message the whole time I was in the hospital that I need to get my house in order. I have always felt this strong connection with my dad and felt sometimes that internal guiding light that I felt sometimes after he died was him guiding me. I don't know if it was him or the Holy Spirit or both. In fact, I like that idea of my dad and the Holy Spirit uniting their forces to be there for me. Even the Holy Spirit could use a good commander like my dad to help. But, anyway, I felt I needed to get my house in order. At first, I took that literally and thought I needed Hackberry Rd to get a little bit ship shape (hence the remodeling is on in full force). Then, I began to realize that our family needs to get our priorities straight and really be strong as a family. Then, I realized getting your house in order can mean yourself. We are a temple of God on earth. I am getting my own house in order emotionally, physically, and spiritually. I realized in the hospital that I have motored through all the trauma of my life with a smile on my face and determination. I don't talk too much about my life to too many people. It was different. It was hard. I come from divorced family and I was separated from my siblings and my beloved grandparents. I moved every year of grade school from one side of the country to the other. I went to 4 different schools for middle school and high school. I struggled as both my parents created new lives for themselves. I was so blessed that my mom married my step father when I was young. He was my guiding light. However, I handled each traumatic event by stuffing my feelings and trying to not be a burden on anyone that was caring for me at the time. I had a good attitude and tried to be pleasing to all the adults, including my teachers. I was a good student and athlete. It helped me adapt every year to a new climate. But, it was very hard emotionally. I often felt very lonely because of the moves and the problems in my family. I stuffed my feelings about problems in adulthood, moves, my dad's death, loss of babies, etc. But, when Lauren got sick and I thought each day might be my last with her, my heart split wide open and every pain I have ever felt came spilling out. I held on tight and knew I needed to be strong for Lauren. The awareness of how hurt I was became unbearable at times. I also didn't see ever feeling anything different. I felt broken. My love for the kids spilled out constantly and my fears that I wasn't enough to keep our family strong began to surface. I began a great friendship with Father Weeder and he led me to seek out God to find these answers. He led Phil and I to seek out Retrouvaille. He also stayed by Lauren's side the whole time. We are very thankful for him. He gave us Faith.
This process has changed me in some ways, but mostly I am still the same. I am a little raw and wobbly right now. But, I don't mind being weak in public. Maybe I hope it will help others to have that courage also. I do have some different friendships, but that isn't all the drama that seems to surround that kind of thing either. It seems natural and expected. Sometimes when friendships end it is painful, but necessary. I do have my family in a way I never thought possible. I also feel like I have myself. So, in essence, I am different now. I am maybe too churchie for some (thanks Mrs. Carlson-love that statement), too open for others, and more introverted than people knew before, but it feels good. Plus, I have a lot to do to get my house in order. I want to enjoy every minute of it. I hope people give me the Peace that I need.
Back to School-The New Normal
Written Sep 17, 2013 10:10amI am finally sitting at my office desk on my computer. Oh wait, we don't have an office. It is Lauren's temporary bedroom and there are headphones, a brush, and about 20 of these rubber band bracelets from her loom all over the desk. We are still in the midst of construction. I'll tell you about that later. Her first day of school picture is on the camera....can't find the cord to download it. I will soon!
Lauren and Jonathan are back in school and fall is settling in. The air is finally a bit cool and as much as I hate to relinquish the summer, we have moved on. Lauren was not nervous at all to start school. She jumped right in as she usually does. No fear! I guess it made sense that Taylor sang "Fearless" to her in the hospital. She could sense that about Lolo. She is fearless, just shy. The shyness is still there, but I can't mistake it for insecurity. I guess I made that mistake before.
Lauren has Mrs. Clark as her homeroom teacher. In usual fashion, she loves all her teachers this year and is just excited to be there. The big surprise is Jonathan is kind of digging school at Prep also. Who knew? Lauren is also excited to be playing volleyball again this year. Phil and I are coaching her school team as we did last year. We liked it last year; this year it is really fun for us as we are thrilled that we actually can do something like this with Lauren. Not bragging or anything, but we have a heck of a team also! Lauren is also playing on her Elite Team. Her arm is getting stronger everyday and so is her endurance. She has started back at piano, but is having trouble getting in a schedule of practice. I have hopes for this as music is the thing she gets lost in and I want her to have this for herself.
It isn't the roller coaster ride as it was in the hospital. There are highs and lows, but not anything like the life and death struggle from December to June. But, the exhaustion has taken its toll on all of us. Lauren is probably the most well rested in the family. But, she is trying hard to rebuild her body. I am sure most people don't see it. She is like me, she just puts a smile on her face and propels forward. But, keeping up with her peers is hard on her. I wanted to slow her down, but her doctor told me as long as she is eating and getting sleep, it is important to let her push herself along. I kept her home last week in the morning to get her some extra sleep. We are keeping our days relaxed. Even though we are in the middle of construction, the week is easy and light, except activities. We concentrate on homework, family dinner, and really quiet nights focused on getting her rested. Her muscles hurt, her emotions are a bit high, and she is so tired her mind has a hard time winding down. We ease the lights, no TV, nice music on when she wants it and we curl up with her and help her sleep. She still loves her Taylor Swift and puts it on her iPad to fall asleep. I have let go of my standards for grades and let her put out the best she has right now. These are dramatically different, but, that is ok. This new normal for her is a struggle. The chemo makes it hard to process information and it hasn't been that far out from chemo for her. it will take a couple of years to know the full affects of the chemo on Lauren. She still has trouble with running and such. Her head pounds and she gets a little light-headed. We know the "red devil" had an affect on her heart. We won't know how much or if it will get worse over the next 2 years. We are monitoring it. She also needs to get back in shape after being in the hospital bed for 6 months. An 11 year old is frustrated by this notion. That makes her downright mad. I can relate. But, she just charges on. Her upper body is starting to recover. Her posture is changing. She isn't as hunched over and weak. She is regaining strength in the muscles of her shoulders and chest. These muscles are recovering from being cut to put the different central lines into her chest cavity. She doesn't like her scars. They rub on her shirt and can be tender. She is worried someone will see them. She is getting used to the way she looks. To me she looks like an angel with her hair enveloping her beautiful little face. But, she is uncomfortable with her short hair that is now really thick and a bit curly. I used to not be patient with her when she fits over her hair; now I help her smoothe it and gel it down. She misses her long hair that was straighter. Every comment that her friends make about their cute hair styles and every time a friend touches another friends hair, as they do in 6th grade, I see that look in Lauren's eyes. But, she shrugs it off pretty quick and moves on. She is back in the mix of her friends. She loves them all. She has missed so much time with them. She is different now and is trying to introduce her friends to the new Lauren. Her closest friends don't seem to notice a change. They were with her all along. They are protective of her. They are so dear. Some of the other kids are in awe of her and some feel uncomfortable. It will all work itself out. Some of it is awkward. She has a little bit of fame and is a celebrity at school with some of the little kids. To much is given, much is expected.....or so it goes. It is weird to think that so much has been given to her. It seems so much has been taken away. But, to some, there is some jealousy of that attention she has been given. It is interesting, attention is something Lauren has never wanted. Attention from her friends and parents, maybe. But, being in the limelight is not a coveted position for her. But, I talk to her often about how to make sure that this attention doesn't change her and she uses it is a positive, not negative way. Taylor Swifts' mom talked to us about that in the hospital. I don't envy her position. I can't imagine trying to protect a child in this world from fame. It is hard enough for me to think about just keeping my child alive. (I know, a little dark, but true.)
So, what now? Lauren will see her new doctor, Dr. Coulter once a month for testing. She will see a cardiologist every 6 months. We wait and see. I didn't want to give her prognosis publicly. But, I am so uncomfortable with people reading crazy stuff off the internet and I am worried that this will come back to Lauren through one of the kids at school. The truth is that she isn't cured. Remission means she has no leukemic cells in the last sample of bone marrow that was taken. Could it actually still be there? Yes. But, we think not. Once a month, we will keep gathering information. Could it return? Yes. She has a 50% chance of staying in remission. Those odds used to take my breath away. They are our new normal. They are what Phil and I live with everyday. So, yes, it does bother me when people come up and say, "Aren't you glad this is all over?" It bothers me right now; I will get used to it. But, other things don't. I believe in Lauren. I also believe in being present in the moment. I don't believe in worrying about the future. Wow, that is such a huge change in me. It is liberating. I feel incredibly hopeful. I also hope that people don't stop praying for her.
On September 11th, she had her check up with Dr. Coulter. (Our dear Dr. Thoompson retired.) The handsome and silly Dr. Coulter is a great fit for Lo. He was sweet to her. He also talked to her about being kind to herself and letting herself heal. He talked to her about accepting the new Lauren that is extremely special to all of us. He is a good egg. She passed out at her appointment after he blood draw. She was tired from school and her lips went white. I was so worried and hanging on for her labs was a bit tense. I thought maybe the anemia was back. It wasn't. Her labs were off, but within normal parameters. She wanted to go visit the 6th floor and hug all the nurses. She misses them. But, by the end of the appointment, she forgot that is what she wanted to do and wanted to get to a friend's house to work on a group project. I thought is was ok to let her move on. She is ready. I dropped her off at her friend's house and she was excited to see her group. She got right into the mix and was being silly. She had already forgotten that she just went to her oncology appointment. No big deal. I left and cried all the way home. I cried because I was relieved that her appointment went ok, but mostly because of the joy of watching her back in the mix of normalcy.
A Time for Everything
Written Aug 20, 2013 12:28pmThis last weekend was about Celebration. It was a celebration of life and a celebration of small victories and big ones. It was fantastic, absolutely beautiful, actually. We had a great party at our house on Friday. It was so unlike Phil and I to throw caution to the wind and put out an open house invite, not knowing how many would actually show up. But, it was the best kind of party. Those that could come were there. Those that couldn't can put this time on their calendar for next year. We are going to do it again. Our new extended family, the Sieffs brought it...so to speak. Zach and Adam made the whole night special to us. They are the epitome of fun. I love their generous hearts! The music was hoppin'! It was fun seeing all of the kids out on the grass dancing and having fun. Of course, having the CU VBall girls there to keep things rolling helped too. I am so appreciative of all of the people that showed up to help us celebrate. It was nice to see every one of them. We even have some new friends too. The weather was perfect, but the smiles on everyone's faces was what really warmed my heart. Seeing both Lauren and Jonathan out dancing with their groups of friends at the same time is a memory that will hold me for a long time. Jonathan has even started to get over the fact that if there is music, it is a known fact that I am going to dance. Not many things are as liberating as shaking your groove thing to a groovy beat, don't you think? So, plan on end of August next year.....come by....we will be doing it again!
The next night, we had 50 Team Lolo participants at the GloRun. We did have a few slip ups getting this thing going, but it was somewhat confusing online on how to get the team thing going. We learned a lot and will make it happen again next year. Lauren eneded up with 8 of her classmates doing the GloRun with her. Kim Root, Lisa Manning, and I walked with the kids and the rest of the team dispersed either running or walking faster than we did. Nanny even did it!!! It was a great time and an even greater cause. Our team was made up up nurses, friends, relatives, Phil's coworkers, some of my former SRB coworkers.....Team Lolo rocked!!!! We ended the night by having some pizza at the Pizza Shoppe with the Roots and many, many kids. We stayed up a little too late, but all in all, it is time to let Lolo push the envelope and not keep her in a box. My tendency is to keep her too rigid, too safe. I need to let her return to being Lolo again. This weekend taught me that. I need to keep her safe and not be careless. But, there is a time for everything. It was our time to dance, to sing, to run......to celebrate! God has given us many things to be grateful for.....I am so thankful that Lauren is home, for my family, and my wonderful friends that help us celebrate! Thank you for sharing our joy!~