Emotional…

Tonight I watched our kids perform possibly their only show of The Addams Family musical at THS. It was supposed to be a rehearsal, and next week there would be 7 shows. It’s an incredibly talented group of kids who are genuinely talented, caring and hardworking. I am honored to be their “costume” lady. They, without warning, put on a performance this evening for their parents and loved ones. We hadn’t had one dress rehearsal, and yet, they were perfectly flawless. They wore their costumes, put on their make up and performed their hearts out. I was especially proud. As they wrapped, the realization this would very likely be their one and only show, our emotions started to flow. They bravely held it together before and during the show, but there is an incredible group of seniors who deserve more. The audiences deserve more. As you know, I lived 19 shows with Molly, and I saw many talented young people. This particular group from THS, is amazingly talented. I know I’ve never seen a group where every single one of them was spot on and perfect for their role. I (we) will miss them deeply. I am with them during rehearsals and 7 shows. I never get tired of their performances. If you’ve ever been part of a theater group, you understand. Damn Corona virus of 2020…

Seasons change…

An old friend; a lovely lady who lost her beloved husband last fall, reached out yesterday to see how we were. I kept it short and sweet- we’re fine! Thank you for asking! But I wanted to tell her the truth. I’ve tried a few times to see a friend back home, but he’s always busy. So I will just make a general announcement for anyone reading my blog. Before Christmas I told my husband of 29 years that I felt alone in my own house. “We haven’t had a very happy marriage for a long time,” he agreed. Splitting up would be a financial hardship, especially for him. We talked a lot, were kinder and more attentive than we had been in a long time. A few weeks passed, and he realized he didn’t love me anymore. I said, “I guess that settles it. It’s ridiculous to keep living like this!” My choice was to buy a “cottage” in Taylorville. We think we can still be friends. The worst part was telling our parents and kids that we had failed. So far things have been very friendly, and we have been agreeable on decisions that had to be made. 2020 would have been 30 years. We should have been posting “Happy Anniversary to the love of my life.” We should have been taking that dream honeymoon we never took. Marriage takes love and effort. I should have thanked him for taking the garbage out when he remembered instead of pointing it out when he forgot. I should have praised him more for cleaning up after dinner instead of rearranging the dishes he put in the dishwasher. We are good people, we just didn’t put enough effort into saving something that should have been the most sacred part of our lives. Seasons change, it’s going to be ok…

300 Molly Meisters…

This Saturday Molly graduates a semester early from SIUe. She will graduate Summa Cum Laude. I remember the anger that enveloped us when I left her there for the first time. She had never even seen the campus when she moved in. We can laugh about it now, kind of. Molly was told by someone at PHS that there were 10,000 Molly Meisters out there, but she would not realize her average”ness” until she went away [to college]. I would have been more worried about the way we left things, but I was so thrilled that she wasn’t in Washington state, I just felt relieved. Two days later, she texted to say how much she liked her chemistry professor. What I didn’t expect was her commitment to achieving her goals. Like many freshmen, she faced her first exams and didn’t do well. She learned very quickly how to study. She didn’t wait to start working on her resume. She obtained a research position that should have been for an upperclassman. I was worried about her going to St. Louis, but she was determined to volunteer at the children’s hospital. She knew she needed a certain number of hours for it to “count”. She researched incessantly and memorized all of the requirements she needed to fulfill to increase her chances of a medical school acceptance. The statistics were not in her or anyone else’s favor. She worried she wouldn’t stand out because of her undergrad choice. Upon further research, she decided to stay at SIUe. I worried about her job as a scribe. Her hours were ridiculous. She would travel back home at 4:30 am. One night she called me at 2:30 am. A gangbanger died on the table, and they were on lock down. When she finally left at 6:30 am, the only people on the streets were cars of 2 men each looking to retaliate the murder. With every step of her education, she was humble and dedicated. Even with her impressive resume, she knew an acceptance her first year out of college was going to be difficult. Of 7000-10, 000 applications, 300 are selected. And sometimes, all you need is one… is part of a quote Molly loves. I adopted it as our quote when all Jake needed was one bone marrow donor, and it turned out to be Molly. The same holds true for med school acceptance. So far, she has been accepted to the U of I, and to have this by her graduation date takes a huge load off! I am so incredibly proud of the kind, funny, caring woman you are and always have been. Your mind is brilliant, and I am so glad you are following the dream you have had since you were a little girl. I am envious of all of the things you have ahead of you! I officially want to change the statistic to, there are 300 Molly Meisters out there… and you will continue to work hard and make me proud!

Just listening…

I talk to a lot of people. All day- it’s what I probably do best. My friend Marla can attest that when we get in the car, I never stop. Ironically, I am very good at listening. I am also good at making sure my thoughts and words are concise and to the point. I have learned, over the years that most people really don’t care what you have to say- they are really just thinking about what they are going to say next. So I am incredibly thankful for the few people in my life who will really listen when I need to talk. Yesterday I spent the day at Schmitt’s Christmas Tree Farm. I have the pleasure of getting to create there. After lunch, I found myself sitting with Jean. I have known her for quite some time, and she knows my story. She reads my blogs faithfully. She asked about me. My life, my kids, my job, my goals. She listened intently as I talked. Her own family surrounded us and a football game blared in the background. But she just kept listening and asking enough questions to keep me talking. She never interrupted nor had to tell me her story, although she definitely has a lot going on in her own life. I felt like I should get back to work, and I excused myself. I felt a little overwhelmed for a second. I leaned over and hugged her. I thanked her for listening. She said she was truly fascinated by all I’d been through, but also how I had handled it. And I believed her….

Hope

I had been quiet on my blog for quite some time. I was literally holding my breath for a year. I couldn’t write about Jake because I refused to say it out loud until I knew for sure. As both of our school years were starting in 2018, he had an appointment with a new pulmonologist. I was hopeful. I started to give her the 21 year history of Jake’s lungs, but she cut me off. “I want you to have a pulmonary lung function test, and when you bomb it, I want to introduce you to the transplant team.” “It’s graft vs host and that’s his best option.” I saw the look on Jake’s face, and I had the same feeling. They don’t think this is gvhd. Jake had issues before the transplant. He was given 4 inhalers in one week because no one knew what was going on. Can we try something new? She prescribed Trelegy, a combination inhaler. We left, feeling numb. We couldn’t speak except Jake finally uttered, “I’m a goner if I have to have a lung transplant. ” I sent his bone marrow doctor a text a few days later. He called me on a Saturday night, and we made a plan to aggressively treat the inflammation in his lungs that we both knew was there before the transplant. A few days after using the Trelegy, Jake said it was like night and day (compared to his old inhaler). I saw a glimmer of hope. During the year Molly and I made a plan. We would each donate a lung. She is his perfect match and I am a universal donor. It would have to be in the spring of 2020 before she started med school and before I got any older. Meanwhile Jake pushed through. Yesterday he had check ups. We don’t see the pulmonologist until December, but the two men who saved Jake’s life and knew his medical history were both especially happy yesterday. They kept us much longer than normal, but just to chat. Our favorite doctor, who literally saved Jake’s life when he had the meningitis gave us insight from his point of view in 2014. He nor anyone else had ever seen pressure so high. No one had ever survived anything like it. The temporary back drain to allow the cerebral spinal fluid to escape- he had never done that on any patient before or since. The mystery as to what was causing it never left his thoughts-for 4 months. All he cared about was protecting Jake’s brain. I truly believe no one else would have been so persistent. He was worried that the bone marrow transplant was Jake’s only hope. We now know how many people don’t survive. Jake’s health will never be perfect. His lungs have improved, and I hope someday there will be a stem cell treatment to improve them more. Jake’s biggest concern yesterday was whether he was getting an A or B in Japanese 4. He told me he wanted to apply for an internship in California. He doubted he could ever get that far from IU med. Jake, your appointments are 6 months apart now. If I have to, I will spend the summer in California. “Not in my apartment, right?” It didn’t matter. What mattered is my kid has hope…

2 A’s

Jake texted me the other day. He was trying to incorporate parmesan cheese into butter. “Do you know how hard that is?” I could only imagine, but I was happy he was cooking. He had a request from a friend for garlic parmesan sauce. I know when Jake is cooking, he is having a moment from the stress that is Rose Hulman. Jake became interested in cooking when he started feeling better and got his appetite back. His specialty is boneless wings and a variety of homemade sauces. His friends were coming the next day for a party. Jake’s nickname from childhood is “Wings Meister”. He was playing baseball, and one of the moms started promising Dairy Queen for hits. When Jake was up, I had to break it to her that Jake didn’t like sweets. When I told her his favorite food, she immediately yelled out that she’d buy him wings. Jake turned, gave a thumbs up and hit it out of the park. The nickname stuck. We didn’t even know Jake had a life threatening illness at the time; we just knew that every season of every sport was cut short because of an acute illness or injury. Looking back, I always wondered what he could have done if he was healthy. He hit many home runs and pitched a perfect game once. He kept plugging away until he couldn’t. There are things he’ll never be able to do physically because of his lungs and neuropathy, and that makes me sad. He can have a cornea transplant soon, but I don’t think he wants to risk it interfering with school. He texted me today knowing he earned at least 2 A’s so far this semester. It’s been long and stressful, and he was more than ready to be done with this semester. Molly will graduate early this December, but I am so looking forward to the day Jake will graduate. He started this journey in 2015, and the transplant interrupted about 2 years of college. He is now a junior, and we’re hoping to keep seeing the light at the end of this tunnel…

Rockstar

I was definitely looking forward to the 3 day weekend. I had a ton of papers to grade and a lab practical. I am taking Anatomy and Physiology at LLCC, and I have worked really hard. It’s been two-fold, the classes have made me a much better science teacher, but I will also be able to be a RN when I retire in a couple of years. As much as I love Taylorville High School, I don’t know if I can teach for 10 more years. The kids make me feel like a rockstar, but it is also an exhausting job. Sometimes I feel stuck under a mound of papers to grade, and the homework is never ending. I initially took 20191108_1131017632569567121680622chemistry at LLCC because I was teaching a chemistry class but knew very little about chemistry. The kids and I muddled through, and I taught them as I taught myself. By the time I took the class that spring, I had already taught myself so much that I aced the class. I loved the fact that I could face the challenge at 50. So I took another class. I had struggled between nursing and teaching many times before, but I had let my fear of chemistry stop me. I now love teaching my 2 chemistry classes. My students know my story, and they are incredibly supportive. Each group of freshmen just requests that I don’t retire until they graduate. I want them to see you can do anything if you put your mind to it. I walk down those halls to smiles, hugs, high fives everyday. Yesterday 2 ornery boys I had 2 years ago were pleasantly surprised to see me by the cafeteria. We exchanged hellos, but then one of them shook his head and said, “Nah! Bring it in, Mrs. Meister!” and we had a group hug. I just had my evaluation, and my kids had a lab practical (for review) that was set up like my college practicals. They did an excellent job of going from station to station collaborating with their partner for the right answer. I paired up my top student with my most immature student. He told me several times that he knew 7 and 1/2 of the 18 questions without his partner’s help. I was touched by his enthusiasm. My boss was also impressed. By the time my long weekend was over, I had whittled down my pile of papers and felt like I could identify all the muscles for my test. I was ready for school because I missed the kids. They came in chattering to tell me about their weekend, and once again I felt loved and adored. I don’t know what will happen in 2 years, but I intend to keep challenging myself to always be better…

Grammy

I am having a blast this summer in Taylorville. I’ve seen my kids, dad and family quite a bit. Everyone’s doing well. Jake is tired of his vision being blocked. We are hoping to get word on his cornea transplant July 11th. I’m proud of the determination and perseverance of both my kids. I have been pontooning and kayaking on the lake in my backyard and meeting lots of neighbors. What’s been a blast though is being co-director of summer camp. I get to be su

Progress?

Jake surprised my dad and his doctor by how much he had “progressed” from the weekend we spent with Jake unable to put sentences together. I have lost track, has it been 4 weeks? I saw a difference almost immediately. His eye looks good under the microscope. But the graph is still covering his pupil. It will be absorbed by his

One year…

Jake pointed out that in a few weeks spring trimester would begin. It would also mark the end of a full year at Rose. A full year- in a row- of school without hospitalization since 2014. He was proud of his midterm grades. He should be. I read posts from Rose parents wondering how to encourage their stressed out students. I giggle to myself that I could introduce them to what stress really looks like, but we all have our own crosses to bear. His eye is still healing. He still wears a patch. He has good vision, but it’s occluded by the still, incredibly slow, absorbing membranes. He started having eye drops made from his own blood’s serum, but the verdict is still out on their effectiveness. The eye is really sensitive to light. The biggest difference a year makes is in his breathing. Last year, 10 steps caused shortness of breath. A new inhaler, Trelegy, made a remarkable difference. This fall Jake started another immunosuppressant (3 total) to help his lungs clear out the inflammation that has been there for years. His blood work has been excellent, and there are no signs of inflammation. The other treatment for inflammation is chemo. That was the one good side effect…I continue to irritate Jake. I text about every 3 days and ask, “How are you?” I “baby” him, “mother” my 22 year old too much!!! I can handle the criticism. My dad is the unsung hero. He drives to Terre Haute to get his medications and groceries. He occasionally just drives over on Tuesdays to get him a double order of wings from BWW. I am amazed by Jake’s determination. Rose is hard. He is likely going to get a minor in Japanese. He gets irritated when I mention that he can read, write and speak the language. It’s a big deal as far as I’m concerned. His first class in Japanese was two summers ago. He was within 2 weeks of finishing, when his cornea burst. He couldn’t complete the final project, and got a D. He intends to retake it because it will now be an easy A. He continues to amaze us. Molly is busy as well. She has been on a research team in biophysics. She continues to scribe in the ER and vontunteer at Shriners. She is studying for the MCAT (entrance test for med school). She has continued to maintain her 4.0 GPA. Many people don’t realize Molly is virtually blind in one eye as well. We are blessed; there is never a day, they aren’t on my mind…