Just breathe…

When Jake was 4 years old, I wanted him checked out for lung issues. I don’t remember much only that we were at Union Hospital having a test for cystic fibrosis. Oh my God, it hadn’t occurred to me it could be that serious… Over the years, I tried different doctors looking for answers. My mom used to say, “Jaker’s has bad lungs…” He was diagnosed with pneumonia more times than I can remember. He has been suffering in silence the past 6 months. He wanted so badly to be back at school. After summer school ended, we had appointments with all his doctors except the lung doctor was gone, maybe for good. Our favorite doctor pulled up his lung function test because his foot neuropathy isn’t very remarkable or interesting anymore. It was bad. Worse than a year ago. We need to see someone… He made it happen, but the earliest appointment was August 15th. We met our young, bubbly, highly recommended pulmonologist. You tanked your lung function test. I’m thinking it’s graft vs host, but I need to meet with the team. “Ok so what do we do?” I want you to try a different inhaler. I want to see you in 6 weeks for another lung function test. If you tank it again, I’d like you to meet with the transplant team to see if you’re even a candidate… even a candidate hung on. I caught the expression on Jake’s face. Keep breathing, Marianne. Hold it together for Jake… “But his lungs have been bad since before the transplant. Did you see the cat scan from when he first got sick?” No, but that’s irrelevant. In the car we didn’t speak for a long time. I finally said, “Jake, trust me. We will do everything possible. This doesn’t mean you’re having another transplant.” He replied calmly, if I do, I’m a goner… My heart was heavy. I didn’t tell anyone. I couldn’t say it out loud. All I could think of was the girl I’d written about who’d died from gvhd attacking her lungs. It’s irreversible. We both managed to start school. The next Friday the pulmonologist called me as I was leaving school. Yeah, I talked to the team and we agree it’s gvhd. She said it in a way that I pictured her chewing gum and twirling her hair around her finger. I’d like to have him meet the transplant team. I really shouldn’t be talking to you. Can I have Jake’s number? I could barely talk. I was mad and fighting tears at the same time. “What did his bone marrow doctor say?” I haven’t talked to him. “There has to be something we can do, something he can try.” Well that’s up to the BMT team. I’d like to call Jake. “No. He just started classes. You aren’t telling us anything different. I don’t want you to upset him.” I really need to have Jake sign paperwork saying I can even talk to you. Why would he be upset? “He will. He will sign whatever you need. Please do not call him just to mention the lung transplant. But he’s an adult. He needs to know. “He already knows. You aren’t saying anything new or different or hopeful. Please don’t call him.” A few days later I heard from Jake. “Mom, it’s already easier to walk around campus.” Today we saw his bone marrow transplant doctor. Jake, would you say the new inhaler has helped 5%, 10%, 30%? “It is literally the difference between night and day.” There is no indication this is graft vs host disease. I’d like to up your immunosuppressants to see if we can’t clear out the inflammation. When your mom called to see me, I wasn’t expecting the inhaler to make such a difference… The increase in medication comes with risks. He will need weekly blood tests. The chances of living past 5 years with a lung transplant are slim. You can be a living donor and donate a lobe. Unfortunately Jake’s match would be his sister. When Jake was first hospitalized on October 23, 2014, he was given a 5% chance of survival. He returned to school last March with one functioning eye, 15 medications and severe shortness of breath. He earned 3 B+’s and an A.

Mom

My life is an open book. I don’t harbor deep secrets. I vent, get it off my chest, hopefully my feelings are validated by someone, and I move on. People don’t want to hear the negativity. People don’t want your baggage. I am the one who addresses the issue head on. Talking about it will hopefully lead to a resolution. Some people, some situations aren’t worth resolving. We all know those people. We avoid them like the plague, their reputation precedes them. I would love to address them. Help them. Tell them the truth. But I know it’s not worth it. Insanity is when you keep doing the same thing over and over, yet expect different results. It’s exhausting. People will listen to you for awhile, maybe have empathy for a minute, then they will move on. My dad and I have new, different conversations everyday. Do we have things we could dwell on? Relive over and over? Could we hash out-things we wish we could change, fix or not have to endure? Obviously, we do. But we don’t. We keep looking forward, keep moving. Otherwise we would suffocate, push everyone away, and be incredibly alone. I am trying to help a young man deal with an overbearing, overprotective mother. It’s the same conversation over and over. He caves in and gives her what she wants because he knows the consequences will be much worse. He’s going off to college. He is not the first kid to go to college. She has to let him go. Let him have some freedom. He needs to set boundaries. Deep down does she want him to fail, want him to come home? I’ve listened, given sound advice, but I’m to the point of growing tired of the same conversation. He either doesn’t listen or the thought of confronting his mom terrifies him. It’s his time to make some decisions about how this is going to go. It’s time to have a grown up conversation with mom, or let this behavior define who he becomes. His new friends won’t be interested or tolerate this behavior. Hopefully he can resolve this in a healthy way that won’t push people, including his mom, away…

Untitled

I’m with Jake at his apartment. He desperately wants to stay here alone, but it’s too soon. I’m not nearly ready yet. I bring him over so he can play games on his computer with his friends. I cook, tidy up, go shopping….I am tired so tonight I am resting. I pushed back the movers for a week. I called my new principal, worried I might have to give up my job. We will work with you. That is why you have sick days…. the truth of the matter is that we both know he can’t find another high school science teacher. I am glad. I want to work there. Jake is determined to stay in his apartment, go back to school this fall. It’s not the first time he’s started classes only to have to withdraw. A week ago we were facing an emergency. We were all scared to death that Jake would lose his eye to graft vs host disease. I put drops in his eyes every two hours. He can do it himself if he has to, but I am there to manage this new schedule. New medicines. He’s back on a high dose of steroids. I don’t even care how puffy my face gets. Twice now when they tried to wean him off the steroids, he’s ended up back in the hospital for a week. This time it was harder. Dave is working in our new town. Thank God for my dad. It is too much pressure. He doesn’t deserve to watch his oldest grandson battle for his health again and again. But he is there-willing to do anything. I ask a lot of him. And in two weeks, I’m moving too. Jake hopefully will… I found this old post that I never finished nor published. It was from August 2017…

Determined

Spring semester Jake expressed concerns about passing Calculus 3. I would have dropped the class, but I encouraged Jake to stick it out. My experience led me to believe the Professor would do something to allow them to pass if they hung in there. I was wrong. Immediately I proclaimed I would call Rose Hulman. “What a jerk! Can’t he see what you’ve been through? Have you talked to him?” Yes Mother. He’s a really good professor. He doesn’t give any partial credit. He’s really tough, but it’s not his fault. I’ve already signed up to retake it this summer…. I knew he wasn’t the only kid to retake a class at Rose Hulman. Many parents had shared their own struggles on the parents’ FB page. But Jake was different; he’s taking a full load with one eye, shortness of breath, on 12 medications- it just didn’t seem fair. But then it occurred to me that Jake hadn’t complained, hadn’t whined, hadn’t made excuses, hadn’t blamed anyone, and he’d already fould a solution. He is about to finish this summer with a very solid A in Calc 3. “That is so irritating Jake! If you would have had this guy last Spring….” Mother, (I know I’m in trouble when he calls me that) the reason I am doing so well this summer is because my last professor was so good. I learned a lot. I just don’t know how to explain an F and an A on my transcript. I thought about it a few seconds, “Just tell the truth, Jake. The fact you don’t blame anyone or make excuses will speak volumes about the man you are.” We’ve never complained; we’ve never asked why us; we’ve never looked back. Molly has been dealing with her own health issues with the same determination. I listen empathetically everyday to other people’s problems. I am encouraging, especially to the kids I am surrounded by. Just the other day I listened as someone blamed an entire university on their son’s failure. He’d had mono one semester. I kept my mouth shut, and shared their joy at his eventual happy ending. But there is a point where we need to pick ourselves up, brush ourselves off and keep moving forword. Jake will continue to be my model of inspiration and determination, and when appropriate I will share it.

Rescue on Bertinetti Lake

Did you ever have a moment where you second guessed a decision? The girls invited me out on the pontoon. I let the dogs out, but only Scout stayed out. I thought she’d enjoy an evening boat ride. I didn’t have my phone, and I hoped Dave wouldn’t get home and worry because she was gone. She hesitated getting on the dock, and for a moment I thought, “This is stupid, take her home…” Scout settled in and seemed to enjoy the ride. I had her on her leash, but in a flash, she jumped off the boat. The driver and I looked at each other with a mixture of surprise and panic. All I could think was Dave would kill me if anything happened to this dog… obviously he wouldn’t, but we would both be devastated. I jumped in. She was paddling to stay afloat, but the look on her face was pitiful. I quickly reached her, and thankfully the ladies threw me flotation devices. I was getting short of breath, and my biggest worry was how and where we could get us both out of the water. Liz threw me a rope; my stupid shorts were hanging past my knees and weighing me down. It was getting harder to breathe. Thankfully another pontoon saw me. They had a ladder. I kicked toward them still hanging onto Scout, the flotation device and the rope. Scout attempted to climb the ladder, but she was scared. The man was trying to get ahold of her when I went under and gave her bottom the biggest push I could muster. We beat Dave home and he greeted Scout, “Hey girl, did you have a bath?” Not exactly, Daddy… Looking back I know it was a stupid move. Thank goodness the ladies with me acted quickly. We laughed that it was a good safety drill. Scout is no worse for the wear, and my heart has returned to normal!

Camp Grammy

I was recently trying to deal with a Negative Nellie. I think she caught on that we were tired of the negativity. She sat down beside me to apologize (kind of) for her attitude. I listened; I could tell it was a one sided conversation. I thought to myself as she rambled on, “if anyone wants to go toe to toe with me on reasons to feel sorry for myself and take it out on everyone around me, game on!”… But I just listened, and she is making an effort. I immersed myself into summer daycamp with 40 kids and college counselors this summer. People have wondered why on earth would you do that? My simple answer, “I knew I would be bored and lonely this summer in my new town”. I now feel like the most popular girl in town. I jumped in and played one of the games. The kids responded. I am old to them so they call me Grammy. I come at 9:30 and stay until 5:30. They run to greet me with hugs. Usually 3 are sitting on my lap. I play, eat and swim with them. About 6 of them were all calling “Marianne! Watch this!” at the same time. Someone leaned over and asked, “Do you get sick of them yelling your name?” Are you kidding? I love it. We go to the pool everyday. I go off the boards, catch them on the slide and help them float. We play cards, two-square and frisbee. We make rubber band bracelets, color and talk all day long. I’m not lonely. One of the older girls at camp the other day said, “Grammy, you always have a smile on your face! Will you come to my softball game?” I never imagined this, but I love it here. Jake is doing very well, but hopes to have a cornea transplant soon. Molly is scribing at an ER, adopting a puppy and studying for the MCAT’s. Dave is very happy. So yeah, I could match your level of things that can make you grumpy any day of the week, but I choose not to. PS the picture is Grammy with a snake around her neck at camp.

Chicken Party

Yesterday my dad and I got Jake settled back into his apartment. He starts spring semester tomorrow. I’ve been sad and worried all day. Sick to my stomach. Molly came home this evening. I will take a personal day on Wednesday to drive her to Indy to job shadow the doctor who saved Jake’s life. Originally she thought she was reaching out to his oncologist, but it is ok. He is very personable and will hopefully asuage some of her anxiety of not “getting into med school”. I will catch up on school work in the cafeteria. I would like you to come with me, but not follow me around… I finally couldn’t stand it any longer. I texted Jake. He will get tired. He feels self conscious about his prednisone puffy cheeks and his eye, which is still converted by the membrane. If you can only handle one class this semester, it is ok, Jake. His friends are now juniors, some of them graduating a year early. He joked about a few things like his driver’s license picture he had to take because he’d turned 21. He continues to be positive and hopeful. He understands how this could have turned out. He responded pretty quickly with a text and a picture. His friends had come over for a chicken party. Jake had dabbled with recipes while he was at home. He was frying chicken and made dipping sauces. At least for tonight, my heart feels happy…

Safe place…

Our country is in crisis. I have never been more sure of this. Going back into the classroom has opened my eyes wider than ever before. Somewhere we have failed. Everyday I become more aware of the pain kids are dealing with every second of everyday. Just this week, I had a 15 year old boy stop by my classroom after school. I listened to him for an hour. I knew he was having depression and anxiety, but I didn’t understand the extent of it….I’m addicted to Xanax and probably alcohol too. When I look tired in class, I am on Xanax. My 31 year old cousin will probably be arrested soon. He’s been grooming me… Unfortunately I know what that means. Two of my students had been shown a lot of attention, showered with gifts and introduced to cocaine. There had been pictures taken and eventually these two boys would be expected to trade sex for drugs. They were being “groomed” by his cousin. He asked to leave my room today, and I took him to the detention room where he feels safe. One of my girls asked me what a word meant today. When I went over to her, she had found her biological mother’s arrest record in Arizona. Another girl yesterday was crying. Her mom was in danger. She had already left the home because her mom’s boyfriend had made sexual advances toward her, but she had heard her mom was being abused by him now. She was lucky because her father took her in, but all I want is a family… I am in shock by the number of grandparents and great grandparents raising my students. One girl lamented the other day how her 80 year old great-grandmother reminded her how ugly she was and lucky she was she let her live there. I raised my kids. I shouldn’t have to raise you…the girl continued to tell me the disgust she has toward her mother for having 2 more kids just for the checks [from the government]. Many of my students have parents in jail, parents addicted to drugs, parents no where to be found. I stand there and wonder how am I supposed to make them care about Charles Darwin. I don’t yell, and have been accused of being too kind in the past. These kids recognize my kindness and they gravitate toward those of us who are. Most don’t take advantage because they recognize the rareness in today’s society. School, for many, is a safe place- a respite from home. But now we have been threatened. A threat was made against our school. Half of my kids were absent on Friday. Those of us there tried to have a normal day. Some were afraid. Some wanted to talk. Some have accepted “our new normal”. It is sad…it is not supposed to be this way …

6 months

It take long time were the words of his surgeon. It was the understatement of the year at our house. It has been 6 months since Jake’s cornea ruptured from graft vs host disease. I have never seen a more patient soul. As if not being able to see hasn’t been enough. The steroids have been worse, perhaps. Jake is back on them. Over Christmas break, he was off, and he felt good for a few days. He stayed at his apartment. By the time he came home, he was worn down. He had developed a cough, shortness of breath- the exact same thing had happened last April which landed him in the hospital for a week. His doctor trusted his judgement and put him back on 8 mg of methylprednisolone. After 2 weeks, he finally feels better. The other night, he felt like he could almost see letters through the membrane still covering his right eye. He has headphones and can talk to friends and do things with them on the computer. I am so thankful to have him here, to hear his voice, and to sneak a hug or a kiss on the top of his head. It has been tough. The high dose steroids had side effects that were scary and caused Jake a lot of frustration, pain and discomfort. The 8 mg dosage should bring relief with no side effects. His attitude is good and hopeful. One person had warned me how hard the recovery was after a bone marrow transplant, but at that time I dismissed it. I was irritated she even mentioned it. I needed hope. At that time, we had no other options. I have been nothing but [blindly] optimistic because that is all I had. Had I known then what I know now, I would have been a nervous wreck. Jake is definitely an exception to everything he has endured, and for that, I am incredibly thankful…

My new normal…

Every single time I drive to or from our new home on Bertinetti Lake, I think about how odd it is that I don’t feel out of place here. I don’t know why I haven’t broken down and boo hoo cried, homesick for the home we had for 19 years, or the town I lived in for 50 years. I never thought I’d teach again when I left Crestwood. As new and strange and odd as this should all seem, I feel content, and at home. I call my dad every day, sometimes more than once. I miss people, of course. I literally have no friends here. I’m closest to the retired prison warden who is in charge of the kids in detention. I don’t feel alone though. I jumped right into my teaching job, like I never left, like I’ve always been a Tornado. My classroom is a happy, comfortable place. I’m talking and listening non-stop, everyday. The kids like to hang around and visit. They have allowed me to easily build a rapport with them, like I’ve been here a long time. There are some tough stories here like many towns. The situations these kids are dealing with never cease to surprise me. I don’t know how some of them get up and are able to face each day. But here we are, and most days, I leave school feeling happy, like I made a difference by making someone feel like he or she mattered. The talk has spread around the district that I’m good for the kids. I try to be, and it comes very easily, but is it really the other way around?