7 stages  

When I was a newlywed, I begged my mom to stop smoking. I’d rather die young than quit smoking. Those words stung like no other. I quit begging and began the 7 stages of grief preparing for the inevitable. Anger. Several years later, she was walking with her firstborn grandson who was 4, and she said, Jakers, Grandma’s going to quit smoking.  And she did. She finally  had the motivation. She was scared. She knew something was wrong. She may have gone through denial, but I skipped that stage. I bargained. I read about her diagnosis. With treatment,  the life expectancy could be 10 years. I’ll take it. If we could just have 10 more years…. it wasn’t always easy. There were definitely struggles. My dad did everything possible to make life more comfortable, easier and worth living. Mom gave it a little effort for awhile to eat healthier and exercise. It was short lived. There were trips to Disney. Mom was on the verge of pneumonia, but I didn’t know until we were in the air. I pushed her in a wheelchair every inch of the way. She made 3 trips with each daughter and her grandkids, but by the 4th year, she couldn’t go with my brother’s family. There were hospitalizations and oxygen and things she longed to still do. There was assistance, ambulances and accommodations.  It was years before she actually died that I had sadness for the way it was and our new normal. I boo hoo bawled at losing my mother long before she actually died. She eventually became a prisoner of her body and required assistance for everything. She lived in the hospital for 3 years. We accepted this and made the most of it. My dad and I visited multiple times a day, and family dinners were now in the hospital cafeteria. For a little while she had a second family. She wanted to live. She wanted to go shopping, to ball games and Florida.  Occasionally my dad, sister and I would take her places. If this is her last day on earth, we know she was happier because we went somewhere. The worst day of my life was the day I had to tell her that Jake was in the hospital. I never dreamed he’d be sick so long. I had to explain where I’d been because it wasn’t with her. She cried and asked what she could do. Pray, Mom. Pray for Jake. My sister still has the voice message she left, so distraught over Jake. I saw the life leave her. Jake got sick October 23rd and she died December 23rd. After her visitation, we took Jake to the ER where we sat all night until he was admitted. A family friend came to get me for her funeral. I didn’t cry. I had gone through the stages of grief.  I was at acceptance. At peace. I keep waiting to break down, but I haven’t yet. Of course I miss her and about everyday there is something I want to tell her. Periodically my phone will butt dial her. Twice, once when I was pushing Jake in her wheelchair, I have literally felt a hug around my back and shoulders. It was her. I consider myself lucky. I had her for 14 more years, not 10. My dad learned to live alone and cook and do laundry while she was still living. He could go tell her about frying potatoes for the first time. We always had laughter. I was with her when she died. Earlier in the evening, they suggested that I tell her it was ok to go. It wasn’t easy, but I wouldn’t change anything. I have no guilt, no regrets. I miss her, but I am thankful for that extra time and being able to go through my grief with her…

100 Days

Around midnight last night Jake came into my bedroom with a force that immediately woke me up. Mom, I need you. “Let me get dressed.” Ironically I had fallen asleep fully clothed, but had changed into my nightgown an hour ago. I cleared my mind quickly preparing for the worst. I don’t have the strength to get the side panel back on my computer.  “What?” My relief outweighed my panic. There definitely wasn’t room for anger. We went downstairs. We successfully installed the panel, and he was trying to get the screw to hold it permantly. “Do you want me to do it?” No Mother, I don’t. This is my project. Quit butting in. Let me do it. Go upstairs. He was mad. I let it drop. Just yesterday, my dad pointed out that we were approaching 100 days. Remind me again of the significance of 100 days. The first 100 days are the most critical. If he could get to 100 days, there was an excellent prognosis. I had put it out of my mind. But now it was almost here. Jake’s only setback had been too much medicine. It was quickly resolved. Will he have to have another bone marrow biopsy?  “I don’t know. Maybe they just do it if there are concerns.” His blood has been clear of blasts (immature cells that mean leukemia). Dr. N. has also been interested in his warts. Actually the disappearance of his warts. They had shown up after an extended, unidentified illness in 1st grade.  I had asked many doctors about them. His toes were literally covered and his hands had 20 or more. Dr. N. seemed to dismiss it in 2012. Maybe it had meant something but nothing worth discussing. Now he seems fascinated that they have disappeared, leaving behind baby smooth skin. It may be a sign that his new immune system is working well. He has been hanging out with friends until midnight. He has been running around playing Pokémon Go. He rode his motorized long board the other night. I’m not ready for it, but he is. He fully intends to start school after Labor Day. He is cutting back on his pain medicine. They have to be tapered, and it will take several months. He went for more than a year with constant pain. Rate your pain 1-10.  We considered 4 to be good and manageable. This was with opiates- something we didn’t want him taking. Now he doesn’t even rate it. He can fully move his toes. They had been virtually dead for so long, I feared they could never return to normal. The chemo and his new immune system have likely removed the inflammation that plagued him after the meningitis. We will celebrate his 100th day! Knowing Jake, he’ll want a steak. Best celebration ever.

Reward

I don’t understand why our elected government officials cannot fix some of our most obvious problems. I get that once they are elected, they become puppets of big money corporations, but I need to understand the reason for allowing multi-generational abuse of the welfare system. I have been very vocal that educators, no matter how hard they teach to the standardized testing, cannot fix what is broken at home. Oh sure, there are rare exceptions of kids who rise above and break the cycle, but it is far and few between. Years ago a father was incarcerated for using dirty wire to induce a premature birth of his child. The child died. His goal was to increase the chances of a mental or physical disability to receive more government aid. I spoke to a woman who, after 20 years, walked away from her job in a law office because she could not stand to watch another person unlawfully gain government assistance by faking a disability or accident. I’ve seen people join the work force only to find that they were better off not working.  I’m all for people having help. They need to be rewarded for doing the right things. Our community has built several new apartment complexes that offer affordable housing. The manager makes them tow the line. A young woman who checked me out at Walmart said it was the nicest place she’d ever lived. She deserves to have nice, affordable housing just like the single mom working admissions at the hospital for 11.00 and hour. They should be rewarded. The part time Walmart employee is the person who should qualify for Obamacare. What many people don’t realize is that education has been ruined by standardized testing. Teachers, administrators and districts are judged and penalized if students don’t perform to certain standards. But there is no motivation, no repercussions, no negative consequences to the student for not trying their best. They know this. Their parents know this. For many, many students, school is just a place to dump kids for 8 hours for free. They get fed and are safe and contained. Not necessarily so their parents can go work at a legal, productive job per se. Many of them are unwanted, abused, neglected and only worth the check they bring in for being born. And they are supposed to care about that standardized test. What if doing well allowed their parents to benefit? What if you got government assistance based on the success of your child? What if you were given a bonus if you maintained a job, took care of your kids and remained drug free? What if you were rewarded if your child graduated from college? I have tried to do everything right my whole life. We got jobs. We got married. We had kids. We bought a house. We saved our money. We love and put our kids first. We want them to do better than we have done. I pay my taxes, and I don’t break the law. I have towed the line my whole life. From the Big 10 state university, my kid got nothing. She graduated with a 4.0, took every AP class offered, took 8 science classes, got a 30 on her ACT. She didn’t qualify for any financial aid because her parents made too much money. I get it. We knew it was the price we would pay for trying to do the right thing. We’ve spent our whole adult lives saving and preparing for our kids to go to college, as our parents and grandparents did. Why are we made to feel like we did it wrong? Their success will be our reward as it should be…

Thankful

I didn’t give enough credit to Liza and her journey. She became passionate about Be the Match after she became a recipient of someone else’s stem cells. I remember when Jake was told it was his only option; I immediately panicked. What if we can’t find a match? We have been reminded over and over what a miracle it was that Molly was a perfect match. One of the complications that can occur after transplant is graft versus host disease. The new stem cells actually attack the host. There are mild to severe cases. Liza ‘ s was severe. Along with the horrible effects of chemotherapy, she was given a 10% chance of surviving her graft versus host disease- it was that severe. Her heart was attacked and she endured an aortic valve replacement. Her lungs were attacked, and she developed an irreversible lung disease that allowed her lungs to only work at 30% capacity. This is what made her susceptible to viruses. Again, they were considering a lung transplant, but at age 26, she died. Jake is more than halfway to his 100 day mark. That is considered a milestone after transplant. He has done incredibly well, and we feel incredibly thankful. There is a part of me that is still very cautious. I kiss his forehead to see if he feels warm (feverish). I ask him multiple times a day how he feels. If he calls me on the phone, my heart skips a beat until I know what he needs. Everything that could have gone wrong has not for Jake. We are blessed and lucky. There is 7 year old named Brody who has been at the children’s hospital next door that is waiting for his transplant. He developed ALL leukemia at age 2. One month before his 5 year anniversary of beating cancer, he was diagnosed with a more aggressive type of leukemia. Brody is on his 5th round of chemotherapy. They cannot get his leukemia in remission. He had septic shock and lost a large part of his intestine. He has 3 brothers, but neither they nor his parents are a match. He has lost several friends from the 5th floor to this horrible disease. I try not to dwell on the negative, but these young, beautiful lives have crossed my path. I want to pay my respect to them, but it also reminds me how lucky we’ve been…

Survey

We park for free with the valet service since Jake is a bone marrow transplant patient. Usually it is just 5 dollars, but it’s a welcome savings. They send me a text message after I have picked up my car. I always rate them a 10- the highest score possible. I don’t even think about it. I also take the time to fill out the hospital surveys and other surveys, as well. And I always give them the highest score possible.  Here’s why. Many businesses are taking these surveys very seriously. To the seriousness that they might not get paid based on the results. Here is something that most people don’t realize though. A 5 is a 5, but a 4 is a zero. Sounds like common core math, huh? Let me repeat that. If you score a 2, 3 or 4 on a survey, it is the same as a zero. So forget about giving an 8 or 9 out of 10 or a 4 out of 5 because they were good. You can write comments, and you should!  Be specific. Name names. Give constructive criticism.  Talk to the manager. Just be very, very careful how you score a survey. And remember, if everyone was great except one person, they are lumped in with the same score. Those valet workers are working. They aren’t neurosurgeons, but they are trying. They are working. I give them a 10. Always….

Liza

Jake took his shoes off in the car. Had a Billy goat been with us, the goat likely would have thrown up. It reminded me when he was 3. He had these sandals he wore one summer, and he kicked them off in the van one night. My parents were with us. We decided it smelled bad enough that even a Billy goat might throw up. Jake soaked his feet when we got home and rubbed off a lot of dry skin, and I slathered them with Perfectly Posh body butter. He liked it so much, I slathered his head and face. The arms and legs would have to wait. He wanted to lie down. It had been a long day at the hospital. He had educated himself about the stock market all the way home from his appointment. If only he would have bought Nintendo stock right before the new Pokémon game took off. His results were good again today. Another medication was reduced.  The doctor thought he looked much better than 3 weeks ago. The cancer center was unusually busy today. As we headed up, a man passed us and said, prayers for you, young man… it is obvious there that Jake had cancer. He is surrounded by bald heads. I often wonder what people are thinking when they see him but don’t know his story. I wonder if it is obvious he had cancer, or if they assume something else like he’s  a meth addict. One night I was scolded because my visitor name tag had our name written on it.  What if a gang banger comes in to finish him off? You would lead them right to him. Those nurses should know better…. technically it was a HIPAA violation, but I didn’t particularly mind. I guess in any given hospital, one could worry about potential danger. She sized me up and let it drop. When Jake was in the bone marrow transplant unit, his name was outside the door. Again, HIPAA violation, but that’s how I knew Liza was there. Her door was open enough that I could see her sitting in bed so I popped my head in. She was supposed to help with the bone marrow registry drive for Jake in January, but she had been sick. She worked for Be the Match and had received a bone marrow transplant 3 years earlier. Her leukemia was ALL and was very aggressive. Her donor was a stranger. Liza was hospitalized for just a virus.  She waved her hand like it was just an inconvenience.  She was headed down to have an MRI the next morning. I didn’t see her again. Liza died Saturday. There had been complications along the way, and her lungs were compromised. The lung transplant team, in June, had not said no to putting her on the transplant list, but they hadn’t said yes either. For a moment, her family had hope. It didn’t matter. Liza is gone. Once again, I will kiss Jake on the head every time I get the chance. He wants a Sugar glider. We might consider letting him buy stock in something, but I’m putting my foot down to a Sugar glider. It’s hard to say no…

Princess

Molly and I went to an Honors’ reception at a Big Ten school last spring. They were trying to sell their program. I looked around me. I assumed Molly would go to college here, but I couldn’t imagine it. Molly had gone off with a group, and I hoped she’d hear things that would cement her decision to go 1 hour away from home. I was stuck with the Helicopters. I looked around thinking I might see an old friend from college or someone I knew. I was already bored with the presentation. They were using studying abroad as their big ticket item to join their program. Hands started going up. My daughter is pre med, blah, blah, blah…My son has been offered the (insert big name scholarship name here)…. My daughter wants to triple major… ok folks, we’re all special here. A lot of kids start out pre med. Here’s how we can help your kid. Still selling. My daughter is a Kosher vegan… go to the website. All questions concerning our food service can be found there. Apparently that didn’t sink in. My son likes to bake, can the dorms accommodate his blossoming talent? Again, go to our website. My daughter has food allergies. What if my son doesn’t like his dorm? Ok Helicopters, let’s talk about the special dorm your student can stay in if he/she joins our Honors’ program. There’s a waiting list, but it’s a great place. Someone on the panel pulls out a cell phone. There are over 30 different special dietary needs that are met daily in all of our food services. Other accommodations can be made. Did we mention that we have a relationship with 99 countries where your special babies can study abroad? There are 99 countries; we are especially proud of the number of countries where your student can study abroad. A hand goes up. My daughter is interested in the study abroad program. What if the country she wants to go to isn’t one of the 99? Can you make arrangements with other countries?  I took a break from my lemon bar. In my mind, I took the microphone. Ok Helicopters, listen up. This is an Honors’ reception. This is not a dorm tour. This is not an informational meeting about food service. All of our fabulous babies are pre med at this point. Do you not understand the point of this panel? So for the 1 question concerning the study abroad opportunities, tell Princess to get over herself.  If Baby can’t find one country out of the 99 offered, then Baby might have to just go with the flow!  In reality, I went to the restroom. Later Molly told me that the thought of having 500 kids in her Chemistry class literally made her want to throw up. I couldn’t argue. That special, warm fuzzy feeling wasn’t there for either of us. I was sad she wouldn’t be an hour from home, but completely understood how she felt. When she got her schedule and realized she has 8:00 classes everyday, I asked her if she wanted Mommy to call the university and get it changed.  We giggled, but I wondered how many Helicopters were picking up the phone…

Billy

Jake is sick of the here and now. He’s ready to be back at school. We’ve had an emotional week. I look at him, and I want nothing more than for him to have some normalcy, but it will take some time. His eyebrows have thinned out. He has lost most of his eyelashes. His skin is dry and peeling.  He’s eating more, but he is still painfully thin. A couple of his fingernails have darkened, and he thinks one is coming loose. He was thinking maybe his hair would start growing back in October if it was like the last time. But it’s not. The last chemo was harsher. As bad as he looks, each day he gets a little stronger. He became irate when I questioned him going to get his blood work done by himself. I just don’t know if it’s a good idea yet. Just like Jake has always done, his guilt got the best of him, and he apologized for getting so angry. He’s sick of us, of being at home, of not having a job. He wants to be with his friends. It’ll get better soon, Jake.  This evening we went to the visitation for a young man who died of cancer. He was diagnosed with colon cancer when Jake was first hospitalized. His sister would visit Jake and me when she visited him. When they went in to reverse his colostomy, they discovered he was full of cancer. So this past year, when she was asking about Jake, they were coming to terms with his cancer being terminal. A couple of weeks ago, we saw him at the cancer center. Billy was glad to see Jake. He was upbeat and looked pretty good. “Jake, buddy, I wish you all the best. Good luck,  Man, I mean it. I wish you the best….” Thanks, Billy.  You too… I don’t think Jake knew how sick he was. Jake wanted to pay his respect. The visitation line was long. I was concerned for Jake. That irritated him. Mother, I’m fine. My feet don’t hurt. I’m not tired. I want to be here. A few people asked me about Jake. They were surprised and probably shocked to see him. They hadn’t realized he was standing right beside me. I’m sure Billy ‘ s family appreciated seeing Jake. Cancer sucks. Jake wondered if Billy had a gene mutation like he did. “I don’t know, Jake, but it seems pretty likely. It is probably yet to be discovered.” Billy had battled Chrohn’s disease before the cancer. They are just at the beginning of understanding why the body attacks itself.  Tonight my prayers are for the ones who suffer and die too young…rest easy, Billy.