Happy Birthday, Alex

 “What do you think he’s trying to tell me?”

Your new job coach called me yesterday at the start of your shift, asking for tips. Her voice was so sincere. “He keeps putting the cleaning supplies away, and I’m not sure why.”

This is still a new job experience - a new workplace, new job coaches, new tasks for you. “He’s trying to see if he can just be done if he puts the supplies away,” I tell her. “Tell him he’s not done yet.” 

I can hear her telling you, “Alex, you’re not done yet.” I suggest she try to make the tasks explicit, saying something like “First,..., then…., next” and foreshadow how much you need to do. She thanked me and hung up and didn’t call back, so I’m hoping it worked.

For someone who is minimally speaking, you sure know how to get your point across. Sometimes people miss what seems so clear to us, those of us who’ve been learning your language for over 30 years.

It’s your birthday today - 34. How is that even possible? So much life has been lived, so many memories. When you were very young, and newly diagnosed with autism, I was often fearful of the future. I was limited and narrow on what I thought your life should be. I naively imagined that I could have much more control over my life, and the life of you and your sister, than is possible. 

Life is messy and complicated and wonderful. We’ve faced frightening times, challenges, joys, and the simple mundane day to day. Your autism makes your life difficult in so many ways, but you are positive and resilient. You have so much of your father in you, in your easy going temperament. 

People constantly underestimate you, but you don’t miss anything. You’re very observant and also in tune with everyone’s emotions, especially your family’s. You like most people, but have no patience for people who are fake, or who treat you like a child or a pet. 

Today, on your birthday, I’m thinking of all the ways you’ve surprised me and made me smile, and some of so very many happy memories.

I remember the way you used to build your creations out of pop tubes and clothespins, cutting them to specific lengths, combining colors, flattening them to use as stim toys. You had a purpose and a plan. Just one of many ways that we could see your engineering mind.

I remember when you asked for white chocolate almond bark at a candy store in Door County and I told you no because I didn’t think you understood what you were asking for. I thought I knew better. Then you asked a second time, and a third time and I finally said yes. And even though you rarely tried any unfamiliar food, you gobbled it down. I learned that you like white chocolate and I learned that I should pay attention to what you were telling me.

I remember when Best Buy sold DVDs and you asked for a tv show called Firefly. I’d never heard of it and I assumed you didn’t know what you were asking for, yet you were so specific. Several trips to Best Buy in a row you made a beeline for the display and grabbed Firefly off the shelf. Finally, we relented and bought the season. And we watched the whole thing and we all loved it. I still don’t know where you learned about that show, but I’m so glad you introduced it to our family.

I remember the time at Cinder’s when you slowly and gently took a straw from the server's apron because she was busy talking and didn’t give you a straw for your drink fast enough for you.

I love baking cookies with you, watching movies, going for drives in the car, and going to Disney. I love the way your smile goes all the way to your eyes and makes them smile. I love the look on your face when you’re trying to do something silly or sneaky. I love watching your face on a roller coaster or walking through Disney World. I love how excited you are to see us when we pick you up for a visit, and I love that you’re ready to be done with us when we bring you back to your home.

I love you for who you are and I’m so lucky to be your mom.

 

Happy Birthday, Alex.

Reflection

The first time I heard Cat Stevens' The Cat's in the Cradle my mom was playing it on a 45 rpm record on my dad's old console stereo. She was preparing for some presentation she was giving; I don't remember why or for whom but she was going to play that record as the intro to her talk. In 1974, when that song was released, that theme of change was definitely something my mom and our family was going through. She was working full time and going to college after years as a full time stay-at-home mom. Her older children were in high school and college and beginning to make their own paths. I was the baby, still in elementary school. When I hear that song as an adult, I remember how I felt listening to is as a child and think about how my own perspective has shifted through the years.

During this pandemic year, I've had plenty of time to reflect on my life, and life in general. For a long time I compartmentalized my life as "before autism" and "after autism" and identified the date of Alex's diagnosis as the time when our lives changed. I gave that moment in time much more power than it deserved. Although it was certainly a defining moment, I know now that a life is filled with a multitude of defining moments, and it is our reactions and choices that shape who we are. 

Now I look at that time as one more experience that has built our family collectively and each of us individually. The adjustment was hard, years in the making. Many moments of Alex's childhood were very hard. Along the autism spectrum, Alex's version of autism brings him many challenges. Alex also has his own unique way of interacting with and viewing the world that make him a wonderful person.

I used to worry about all the ways I fell short as a mother for both Alex and Jessica. I spent a lot of years chasing the elusive magic wand that would make life easier for Alex. While I truly felt he didn't need to be "fixed," I did think that if I didn't find the "right" therapy or if I didn't help him learn to talk that would mean I had failed as a mother. When I look back now, it is much easier to see what we did well, and to enjoy and focus on the happy times of his childhood and our family life.

Since Alex's autism diagnosis, life has thrown many more challenges our way; many of them much harder than that diagnosis. Alex's autism is only one piece of a very colorful tapestry that continues to grow. Experiencing loss, illness, and death has definitely grown our perspective over time. Our own experience, hopefully, helps us grow empathy for the experiences of others. Life is messy - at times difficult and painful. It is also joyful and precious.

Facebook reminded me of this photo today. It was taken when Alex was maybe three years old. It's one of my very favorite photos of Alex and his dad. Now Alex is a grown man and John has salt and pepper hair and when I look at them I see all of our shared history.

It really is all those life experiences that make us who we are. Those seasons of change that we go through and the relationships we forge during those shared experiences. Alex is a grown man and I couldn't be more proud of him. He has a full life, thanks to the support of many but also thanks to his own efforts and attitude. He survived cancer, two solid years of multiple, arduous treatments. He's handling this pandemic better than I am. He's a good person with a happy, healthy life surrounded by people he loves and who love him. How lucky am I to be his mother.

Autism, a Pandemic, and the Holidays

 I put the Christmas Tree up today - one of my favorite rituals. It's like a three dimensional scrapbook - each ornament carries the memories of the Christmas when it was added to my collection. I started with a plan in 1984 - the year John and I married. I've added a few ornaments a year ever since. Jessica and Alex have their own collections. Jessica's collection is now a part of her family Christmas Tree. Alex's collection continues to be part of ours. Putting the tree up gives me a sense of tradition, continuity, and normalcy in an extremely abnormal year. 2020. The year of the global pandemic: Covid-19.

The first ornament from 1984.

Our tree - 2020

You'd think that during a pandemic, with lots of time on my hands since I retired from teaching in June, that I would do nothing but write. I have time. I have thoughts (oh, so very many thoughts - a pandemic ia a terrible thing for an over thinker like myself). Every time I try to write, I get stuck. I get ideas in the shower, while walking the dogs, while baking and doing dishes. I honestly can't stop the thoughts from consuming me. Sometimes, they even seem like thoughts worth sharing. But, like trying to grasp smoke, they disappear when I try to give them form.

I've been thinking about how the pandemic has impacted Alex and how, yet again, Alex shows me what resilience is. My fear back in March was how Alex would react if we couldn't see him regularly, if our visits changed. We had never in his life gone more than two weeks without seeing him. In mid-March when schools in Wisconsin sent everyone home, Alex's group home also locked down. It would be more than two months before we would see Alex in person again. We learned to have awkward video chats with the help of his caregivers. We've learned to have one-sided conversations with Alex over the years, but the video chat was a whole new kind of awkward. It was comforting to see him and hear his voice.

After resuming in person visitation, that all stopped again in the fall when Covid cases in Wisconsin began to really escalate. As the scientists learned more about the virus, outside visits appeared to be safer than inside ones, so we were able to have some outside visits with Alex. He was not a fan at first. The visits were short and we couldn't really "do" much. We sat in the swing, which ended up to be quite awkward. Then we started taking walks around the block. Not his favorite activity, but it was better than simply sitting there.

It's just after Thanksgiving, and we were able to have a home visit with Alex. We took lots of precautions. Alex sees no one but his caregivers, who are masked. John works from home and we have very minimal contact with the outside world, outside of errands and seeing Jessica's family. Our "bubble" as they like to talk about is extremely small. I'm not sure if we'll be able to see him at Christmas. 

Like most everyone else, I've been thinking a lot about the holidays. It's so easy to get caught up in my feelings about what the pandemic is changing about the holidays. I'm feeling the pandemic fatigue we keep reading about. I miss my friends and family. I miss restaurants, traveling, and going to the theatre. I have cooked more meals in 2020 than I've ever cooked in one year before. The list of things that i didn't get to do in 2020 is long. The grief I feel over all of this is real. 

When Alex was young, the holidays were often complicated and difficult. He was easily overwhelmed and frustrated by the changes in schedule. We had to rethink how we did things and holidays tended to look different than we imagined them. Sometimes that meant they were more difficult, but mostly it just meant they were just different.

My father died on December 23, 1994. That year Christmas looked very different for our extended family, for obvious reasons. Dad had cancer and it became apparent that he didn't have much time left, so we. had an impromptu celebration with family members who lived close enough to drop everything and make the trip to my parents' house.

Alex and Grandpa Herb - Christmas 1994
My dad died about a week later.

Alex's stem cell transplant was December 28, 2015. Our Christmas that year was spent in the hospital. For the most part, it was Alex, John, and me for the 21 days Alex spent in the hospital and the time after in our temporary apartment. We had some visitors that helped us celebrate. Although that Christmas was difficult, I have warm memories of going through that time together. We truly did not know if that would be Alex's last Christmas and yet he's here, healthy and thriving, five years later.

Living through a pandemic is not an experience I ever thought about. When all of this started nine months ago, I never imagined that we would still be dealing with this so many months later. Alex has been amazingly resilient, yet again. His routines and his world keep changing, yet his attitude remains positive and strong. He can't tell me, but I often think that perhaps he isn't subject to the expectations that often cause me disappointment. I don't know if that's part of his autism or just part of his personality, but he seems much more able to roll with things than I am. 

Christmas will look different. I don't know if I'll get to see Alex. I do know that I won't be doing many of the things I'm used to doing. I also know that I've had to deal with grief and sacrifices and heartache before and will again. I'm hopeful that there is a light at the end of the tunnel when the Covid-19 vaccine is approved. I'm hoping that 2021 is a much better year than 2020. Until then, I'll do my best to remember the Christmases past, be okay with the present, and look forward to the future.

Summer for Special Needs

I'm about to share a secret with you about summer for special needs kiddos and their parents - it's hard.

Summer conjures up beautiful pictures of carefree days in the yard, at the park, at the beach; playing baseball or taking summer school classes. Sleep in, stay up late, picnics, cook outs, suspending the rules in favor of those special summer moments.

The reality of summer with a special needs child is something different; at least it was for mine. In today's terms, Alex has an autism spectrum disorder, adhd, and generalized anxiety disorder. Let's go back to the 1990's and early 2000's. Autism was much less prevalent (4 in 10,000 was the CDC statistic in 1992) and unknown by the majority of people we encountered.  We were pioneers of a sort, paving the way for Alex wherever he went - there wasn't Miracle League baseball or Sensory Sundays at local museums or any of the things you can readily find today.

When I think back on Alex's childhood, I think about the things that we did that worked, and I also think about the young mom that I was. I wish I could tell that mom to trust herself and to be kind to herself.

I'd like to share a few of the things that I learned so that if this isn't your world you can maybe develop a little empathy for what families like ours go through but also, if it is your world, to tell you that I see you, I see your struggles and your triumphs.

Listen to your gut:

There are many more resources out there today than there were when we were raising Alex, so I didn't always have a lot to go on. The first three summers after Alex's diagnosis I took grad classes on working with kids with autism. I read a few books. Mostly, though, I tried to figure out how to live my life. I think that becoming knowledgeable and informed is crucial, but at the end of the day you have to synthesize all of that information for yourself and your child - you still have to trust your gut. I became a detective and the mystery I was trying to solve was Alex. One of the most profound things I learned early on was that all behaviors have communicative intent and when you're trying to replace a negative behavior and you don't figure out what that behavior is communicating, your child will replace it with something else, likely worse. I looked at everything Alex did and tried to figure out what he was telling me. Alex has major communication issues, but over time we've learned to communicate with each other using AAC, some spoken language, and developing shortcuts and an understanding that I can't quite articulate. When Alex was young, I had so much to learn. I learned to tell when Alex was overwhelmed, when he was happy, when he was frustrated. I had to gauge when I could push him to try new things, and when to back off. It was a lot of trial and error. I had to trust what I thought was right for Alex.

Routine is Your Friend:

Alex craved routine. I understood how important routine was when I realized that he used it as a tool to help manage his world. When you don't have language, which Alex didn't, you don't have that tool to help you understand and negotiate what's happening in your day. Routine helps take the place of that. I may not understand what you say to me, but I know what's supposed to happen next. The sameness of routine is comforting as well. Alex qualified for extended school year, which was a huge help. For at least part of the summer he still followed his normal morning routine, got on a bus, and went to school for a few hours. Throughout the summer, he got up and went to bed at the same time. That was not my design, it was what he did. Sitting out by the campfire at our friends' cottage with everyone, including all the other kids, our friends would ask, "where's Alex?" He was in bed because it was 9:00. It didn't matter to him that it wasn't dark yet and he could stay up by the fire. Being away from home was different enough for him - keeping his bedtime worked better for him. It also meant that we were the only ones awake at 6:00 am while everyone else was sleeping in. We'd take an early morning walk or an early swim. He didn't sleep in, and he couldn't be up by himself. (He still can't, at the age of 29. If Alex is awake, someone must be awake with him.) Alex still is a creature of routine. We just got back from taking him on vacation, and he was up every morning at 6:00 and in bed by 9:00.

Manage Expectations:

I think this is huge, not just for special needs parents, but for all parents. We just got back from a family trip to Disney (Alex loves it, and they make great accommodations) and I could give this advice to lots of parents there. Stop thinking about what your summer or your vacation "should" be. You have to learn to be realistic and brutally honest. I think I learned to manage expectations early on, but I often did so with angst. My husband is much better at living in the moment, so he was often the gentle (and sometimes not so gentle) nudge I needed.  I had to constantly think about how much Alex could do. If my goal was to try to develop a new skill or provide a new challenge, I had to think about the incremental steps to get there. When he was young, taking him to the movies on Saturday meant that I couldn't make any plans for Sunday because he would need that whole day to recover. The energy and effort he had to expend to go to a movie theatre was so great he couldn't do any more. Going to a family function meant that we had to have an escape plan - Alex could handle a few hours at best, but that was it. We had to plan ahead, would we all leave, would one of us take him and the other stay with Jess; we always had back ups. We had to learn that we couldn't do all the things, but if we were realistic about what we tried, we had a much better chance for success and for everyone to have a good time.

Divide and Conquer:

Alex and his sister had very different needs. Honestly, I get the fact that any time you have more than one child it all becomes a huge balancing act. We tried to balance Alex's needs with the family. One strategy that worked for us was to divide and conquer when it came to time with our kids. I think this has become more of a common thing today than it was when Jess and Alex were young, or maybe I just didn't know about it back then. I guess I pictured that having two children nineteen months apart meant that we would be able to do everything together. Clearly, that was unrealistic. We learned to designate what was family time, what was Alex time, and what was Jessica time. Jess would have opportunities on her own with one of us while the other was with Alex. Sometimes it meant that we got a caregiver for Alex so we could both do things with Jess. We started taking her away for a weekend, just the three of us, when she was six. We would visit museums slowly, instead of at what we had lovingly dubbed "Alex pace." We ate at restaurants that she wanted to go to that we knew he would not be able to do. She got to choose everything. It was a special time for her and for us, but it also made it easier to enjoy the things we did the four of us. When the four of use went to museum together, we knew that we had to follow Alex's lead.

Trust Yourself and Ask for Help: 

This one is more of a "do as I say and not as I do." I was not good at asking for help (I'm still not). Despite that, friends came forward in many ways, large and small. Looking back, I also think that they would have liked to help more if they had known what to do. Letting them know what Alex needed, what we needed, would have been helpful to them. One year, my brother and sister in law planned their son's birthday party at a pool, in part because they knew Alex would like it. We went to a friend's cottage with a group every summer for about ten years. Over time, certain activities got planned or adjusted in ways that accommodated Alex, without anything ever being said. I remember the year that they bought a new tube for pulling behind the boat that worked well for Alex, "I saw it and thought Alex would like it," my friend said. Alex friendly foods appeared at gatherings. Let people help you. They want to. The ones that won't aren't worth your time anyway.

There's No Such Thing as "Free Time," so Make a Plan:

Alex's needs meant no free time for his dad or me. That's not a complaint, just a reality that you don't experience if you don't have a child with Alex's needs. That freedom that happens when your child can get up on their own on Saturday morning and get a bowl of cereal while you sleep in - it never happened in our household. That freedom when your child can go over to play at a neighbor's house on their own - that never happened either. Alex has never had a moment in his life that wasn't orchestrated and supervised by someone else. In order to be able to do that fully, you have to find a way to make time for yourself. Alex's few hours of summer school for part of the summer meant I could drive Jessica to and from her own summer school classes, or clean the house, or do a few errands. When dad got home from work, it might be that I took a walk, or hid in the bedroom and read a book. I played with the kids while dad worked in the shop for a few hours. We got caregivers regularly and had date nights. It didn't really take a lot, but we had to have something.

No one has a perfect summer:

At the end of summer, I would inevitable think of all the things that we didn't do or didn't get to. There were moments when I gave in to the thought that I had blown the whole thing. Then I would remind myself that no one has a perfect summer. Thankfully, this was before social media was there to tell me that all of my friends were having a perfect summer or to tell me all the ways I was messing up as a parent. By the time the end of summer rolled around, we were all ready to get back to our routine. The kids and I were all ready for the new school year to begin.

I could let myself dwell on the fact that we couldn't go to Fourth of July fireworks because Alex wouldn't stay away that late and couldn't manage the waiting required when you get to the part two hours before fireworks start, or the summer classes he couldn't take, or the activities we left early because he was starting to have a melt down. Or I could think about the trips to swim in Lake Michigan, or day trips to my aunt's cottage, or getting ice cream at Dick's Drive In; trips to the pool, doing art projects at home, and watching endless hours of Disney's Sing Along Songs. Choose the focus on the memories of what you did do.

Have Fun:

You know what? Despite the challenges, actually probably because of them, I look back on my children's childhood fondly. I would do it all again, even with some of the crazy things that happened. We had fun. It's popular now to talk about the importance of "making memories." We didn't talk about it like that back in the day, we just did stuff. We have lots of great memories and family stories. I didn't get to be the mom lounging poolside with a book because I had to be right with Alex, but I did get to be the mom that went down the waterslide with him a million times while he was squealing with delight. Jess and I still laugh about the time we went to Door County for the day and every candy shop we went in, Alex pointed to white chocolate almond bark in the display case and we told him no, because we "knew" he wouldn't like it. After about three shops we finally gave in, and he ate it all, this kid who never tries new foods and had never, to our knowledge, even seen white chocolate almond bark before.

Be Kind to Yourself:

It has taken me until Alex's adulthood to allow myself to think that I did a good job as a mom when he was young. I doubted myself all the time. I was strong enough to not chase every fad out there (when it comes to autism - there are many). I looked for the science behind the things I tried and I trusted what intuitively made sense. I did the things that I knew I should, I just questioned myself every time. I can now say that not only did I do my best, I did a good job not just for Alex but for both my kids. I wish I could have let myself think that 25 years ago. It would have saved me a lot of sleepless nights.

Alex's loud vocalizations as we sat at the restaurant were evidence of how much he has learned to regulate himself, and also how much effort it takes for him to do things others might take for granted. I apologized to our server. "We were just at the Lion King at the PAC. He was quiet for two and a half hours, and he just can't be quiet anymore." She smiled warmly and laughed. "it's loud in here, no worries."

People often ask me how we know how Alex is feeling or what he's thinking. It's a fair question, one with an answer that is both complicated and uncomplicated. He doesn't speak, so it takes detective work on our part. At the same time, how do you know how your infant is feeling? How do you know your partner is upset or pleased with you without them saying a word? There's an old adage, "being unable to speak is not the same as having nothing to say." We're learned to pay attention.

Which brings me to the Lion King. A day like this was many years in the making. It is the culmination of years of work helping Alex with his many sensory issues and with self-regulation. Many therapists and teachers have helped him, and us, to learn how his brain and body work and what he needs. It involved intention and practice.

More than 10 years ago, I'm not sure exactly when, Alex attended his first traveling Broadway production. The show was Wicked, and he'd listened to the cast album dozens of times. This was the show we felt would be perfect to capture his attention, and we felt he was old enough and had acquired the skills to attend a performance. This was years before special sensory performances for people with autism on Broadway, and years before the kind of publicity that exists today to help the public be aware of individuals like Alex.

There is nothing spontaneous about taking Alex to the theatre, or about trying a brand new experience. That was even more true 10 or 20 years ago. We prepared for Wicked by continuing to listen to the cast album and talking about the upcoming trip to the theatre. We drove by the theatre. I contacted the theatre to find out about handicapped seating. (Accommodations for physical handicaps were much better understood than for so-called "invisible" disabilities.) I created a social story that we practiced for about a week before the event. A social story is basically a script, with text and photos, that helps someone rehearse for an event. The story described what Alex would be doing and contained photos from the show and photos of the theatre. We also learned over the years that preparation had to be early enough before an event, but not too early. Starting too early - more than a few days or a week - created anxiety as well. We got box seats. The movable chairs that are perfect if you are in a wheelchair so the chair can be removed are also perfect for Alex. If he rocks a bit, there is no one immediately around him that would be bothered. John and I can physically draw our chairs nearer to Alex to provide some comfort in proximity. We had an escape route to the bathroom planned. We had a bottle of water. (This was when they were just beginning to allow water in the theatre and before wine, snacks, and drinks of all kinds went in with people.) We brought noise -cancelling headphones, because Alex's hearing is so sensitive he can hear everything he needs to while wearing them. We were also prepared for the fact that all of this preparation might fail, and Alex would be unable to stay for the performance, that he would need to leave mid-way.  We tried to predict every aspect of that day for him.

That first trip to Wicked was a rousing success. Alex loved the show. John and I loved watching Alex love the show. It was the beginning of many trips to the theatre. Alex has seen Wicked multiple times, and one of the times through he even got to meet the actress who was playing Glinda and she gave him a backstage tour.

More than10 years of preparation went into our attendance at Lion King. Our entire day is orchestrated to help him have the internal resources he needs to enjoy the show. We brought him home for the weekend, so that we could have a quiet day leading up to the performance. Going to the PAC is now familiar to him, so there is no longer the need for a social story. We had been talking about the show for awhile, though, and the way he repeated "Lion King" indicated he understood what we were talking about. We watched a few YouTube videos of scenes from the musical just before leaving home for the theatre.

Now when we got to a show we have an established routine, which helps Alex (and all of us, I suppose) immensely. Once again, I experienced the joy of the performance, and the joy of watching Alex enjoy something that I love so much. He did an amazing job sitting still without rocking, and watching without vocalizing - two things he does to self-regulate. He watched intently, taking everything in. There is no doubt that he was enjoying everything about the show.

It was all quiet easy, really, or seemed easy. It was after the show when Alex showed us just how much effort it takes for him to do something like this. Once the performance ended and we got to the car, the vocalizations started. One way he self-regulates is by making vocalizations. If he is tired, sick, or anxious, they can be quite loud. He did not seem agitated in any way - his body language was not agitated - but he had to vocalize. He had to do some rocking as well. We went for food after the show, to a familiar restaurant where we knew he would be comfortable because going out to eat in itself is something he enjoys but that requires a lot of effort on his part. The contrast made it so clear to us that he used all the effort he could for the performance. It showed us how much he's learned and how much control he's gained.

At that point, he had done all he could. We apologized to the server, but at that point we knew Alex was going to have to do what he needed to do. Food helped (there was surely a bit of "hangry" going on, or as we call it with Alex, "hanxious") and within a couple of hours he was able to relax. The amount of time it takes him to regulate after a big event has decreased tremendously over the years as well. When he was little, going to a movie took a day or more to recover from. Now, going to the theatre took a couple of hours to re-regulate everything.

It really was a wonderful day. It made me glad that we've invested the effort over the years to give Alex these experiences, and it made me appreciate how far he's come. I can't wait to take him to his next show.

Incredulous

Scanxiety: the gut-wrenching fear cancer patients (and families) experience in anticipation of a cancer scan and/or scan results. After 11 PET scans between February 2015 and August 2017, this 11 month interval was the longest time between scans since Alex's Hodgkin's Lymphoma diagnosis. As the date for the scan approached, it became increasingly difficult for me to quell the fear growing in the pit of my stomach.

All of Alex's scans are done under sedation since there is no other way to guarantee that he is completely still for the test. A radioactive tracer is injected and he must lie still for 50 minutes; during this time, John (dad), Jessica (sister), and I sit with him to ensure that he is quiet and still. (Excessive movement could cause a false reading on the scan since muscle movement and cancer both attract the tracer.)

It's a long morning, which begins when my alarm goes off at 4:30 am and culminates with an appointment with Alex's medical team at 12:40. Alex has to fast because of the sedation, and this time he seems more annoyed at not being able to drink than he is about not being able to eat. He asks for Mountain Dew and is wholly unimpressed with being told he can't have anything. (Alex may be minimally verbal, but he can say Mountain Dew and he can certainly make his displeasure clear.)

There's a lot of waiting, since they require him to report to the PAR (patient arrival and recovery) area a full two hours before the scan. We start the day at the cancer center lab, and they put in an IV and draw labs. Since they've already put in the IV, there is nothing for the nurse at the PAR to do except update and confirm his health history.

We're repeat customers in the PET scan area, and the tech introduces himself, "My name is Donald, we've met before." Alex leaves an impression on people and they always remember him.

After the scan, it's back to the PAR. It's about a half mile walk through the bowels of the hospital to and from the PAR to the PET scan area. The walk feels good since it's a day of so much sitting and waiting. Alex is on the gurney, pushed by a transport specialist, with  his entourage in tow. Alex has to be observed for an hour because of the sedation, and they over crackers and white soda. I bring a peanut butter sandwich because by this time Alex hasn't eaten in almost 20 hours and we've learned that he doesn't have any nausea following sedation. He is, however, ravenous. Jess and I go to the cafeteria to grab sandwiches to bring back to Alex's waiting area, and they have chicken tenders, so I grab some. I'm not sure the nurse entirely approved of me giving him the chicken, but we've been through this numerous times before. We also have a short window of time before the next appointment and we don't need to add to everyone's anxiety by being hungry.

Alex gets released from the PAR and we use a wheelchair (because of the sedation, although he comes out of it beautifully) to take him to his next appointment. We get to Grace Clinic early, but it is packed - standing room only. I'm glad that Alex has a wheelchair to sit in. It's almost 20 minutes after his scheduled appointment time before we're called back. Another excruciatingly slow passage of time.

The tech is finishing taking vitals and entering them into the computer when the doctor and PA walk in. They start with small talk and asking about Alex's birthday trip to Disney. We talk about Alex's love of roller coasters and I'm watching their faces, the doctor and the PA, and trying to discern body language. After the brief Disney conversation, the doctor says, "Well, the scan is clear."

He said some more words, something about no cancer, but I can't remember exactly what he said. I was so prepared for bad news, that I couldn't respond. The doctor spoke, and then there was silence. Maybe it was a few seconds, maybe it was a full minute. I don't know. No one spoke. We were all just trying to take it all in.

Then the doctor said no scan for another year.

I guess the best word to describe how I felt, and still feel, is incredulous.

This remission has lasted an unexpected 18 months. When Alex was diagnosed with Hodgkin's, we were told "at least he has the 'good' cancer." While it's true that 80% are cured with frontline chemo, there is no "good" cancer. For those, like Alex, in the unlucky 20%, things aren't so rosy. Alex has had 8 treatments, including a stem cell transplant. He had 10 months of remission after the transplant, and when he relapsed we were told that the options were no longer curative. There were treatments available, but they would only buy time. When he started Nivo (Nivolumab, an immunotherapy, PD1 inhibitor) we were hoping he would be on it for two years and that there would be something new when that drug no longer worked. He developed severe pneumonitis after only four doses and had to stop the drug. We were devastated and then, unexpectedly, a PET scan showed he was in complete remission. Five months later, another clean scan. Now, 11 months after that, another clean scan. Almost 18 months of remission.

Alex's medical team at Froedtert Hospital (MCW) - Dr. Mehdi Hamadani and Katie Zellner.

The doctor said that the longer Alex stays in remission, the more the odds improve. There is no certainty - only math. I struggle between feelings of hope and despair - wondering what will happen. That is a pointless road to travel down. Instead, it's time to just get busy living.

Here's to you, Alex. You are a brave man. You've fought hard and, for now, you've won. Celebrate.

Embrace the Boring

Today is Alex's "Cancervesary:" three years since his diagnosis. Happily, there is nothing cancer-related about today. Alex is at his house, doing whatever their normal Sunday things are, and John and I are at home, each of us getting caught up on some things for work and deciding what the rest of our day looks like. Beautifully, wonderfully mundane stuff.

We had appointments at Froedtert this past week - a six month check with Alex's Lymphoma Specialist. We drove two hours, waited an hour for a blood draw, all for maybe five minutes with the medical team. No news doesn't take long to deliver. We'll go back in the summer for a PET scan and to see the doctor again. In between, there is a spring appointment with Alex's local oncologist. They're just monitoring at this point. We know what to watch for as well. Right now, though, Alex is doing really well.

Life continues to be busy, but the things that occupy us are not life or death. The battery died and needed to be replaced on my Subaru, I always feel behind on grading papers for school, the constant battle to stay caught up on laundry ("always clean, seldom folded" could by my motto),  getting paperwork ready for tax time - whatever your list is, ours is probably similar. It's all just day to day stuff, and we are loving it.

There just really isn't a lot to report right now, and I'm okay with that.

Alex dressed up to go to the Night to Shine Prom with his housemates.

Celebratory frozen custard after Alex's oncology appointment. Kopp's Frozen Custard, Milwaukee, WI

It's Complicated

We've been enjoying our visits with Alex, and all of us have been readjusting to life with Alex out on his own. Clearly, going through his cancer treatment changed the landscape of everything, and so much of our time with Alex revolved around his treatment. It's an understatement to say that it's nice to just be able to have dinner with him or have him home for an uneventful weekend.

Fazoli's continues to be a favorite, so it is a frequent dinner destination when we have dinner together. I love looking at his face - seeing him look healthy and at ease.

Alex is doing so well right now, and I love to be able to tell people when they ask that he is feeling great. Yet, always on the tip of my tongue is the qualifier, "for now."


Remission = Happy, right?

Mostly, yes. It's not that I'm ungrateful or unappreciative of where we are at now; I am. It's just that when your hand has been slammed in that car door time after time, you wince a little every time you open it.

I understand it when people say that "no one knows what tomorrow will bring," and I agree with them. However, Alex has been given a bit more information than most about his future. A year ago a very well respected and knowledgeable specialist told us that Alex would be in treatment for his cancer for the rest of his life. We also didn't discontinue his immunotherapy because it stopped working, we didn't even discontinue it because it worked. We had to discontinue it because of the damage it was doing to his lungs.

And yet, here he is, cancer free for over eight months now. "Durable remission" is a term that has been used. The doctors just don't know how long this will last. There isn't enough data on his treatment to tell us what will happen. There are study patients who have been in remission from this drug for two years, but they continued to receive the drug the whole time. I don't know if there are even numbers on how long someone stayed in remission after stopping the drug. I purposely haven't tried to find out.

So when you ask me how Alex is, and my response is "He's doing great" but I add on that "for now," I'm not trying to be bleak, or difficult. I'm terrified. If I don't say, "for now" out loud, I'm still thinking it in my head. I'm forcing myself to make plans for the future - to think about life a year or five years from now. I'm allowing myself to imagine a life a year or five years from now with Alex in it. I'm pushing away the fear that such dreams are foolishly optimistic. Because I don't know what tomorrow will bring. I do know sadly, from experience, that we are capable of dropping everything and dealing with whatever we need to in the moment. I also know that dwelling on it now robs me of this time when he's well. I know I can't squander it. Knowing a thing and managing a thing are not exactly the same, though, are they?

Alex is doing great. He looks healthy. He has energy. He's active with his house. His anxiety is generally low, and his good days and bad days appear to revolve more around his regular rhythms than anything cancer related. He is feeling better than he has since before he had cancer. We're back in a routine of visits. He spent several days at home over Thanksgiving, and will be with us again at Christmas. This year, our Christmas will be fairly quiet, which is a welcome change from the past two years. No hospitals, no treatments, just family time, baking, and Christmas movies. I love, love, love Christmas and am very content for it to be a quiet one.

Yes, Alex is doing great, and so are we. Thanks for asking.

What Are You Waiting For?

How often do you find yourself thinking or saying, "....when my life settles down."

That has been my mantra for as long as I can remember. John, my sweet, patient husband, has spent more than 30 years trying to coax me to live in the moment. I've always considered my focus, planning, and goal setting to be assets, so it has been an uphill battle for him. As is true with many character traits, our assets can also be our undoing. For example, confidence can also be arrogance, perseverance can also be stubbornness. The key is when does the character trait serve you, or when are you serving the trait?

Is it planning, or wishing your life away?

As a young mom, busy with two active children, one with significant special needs, and also a full time teaching job, I often thought about when my life would "settle down." Experienced moms already know that my life never did settle down, the chaos of my life just morphed into something new and different.

Family stresses, work stresses, life stresses all ebb and flow.

Joy and excitement and new opportunities add to the mix, but don't decrease the "busy-ness" or chaos of everyday life.

Cancer has been working hard to teach me lessons about my life. I've been learning about strength and resilience and I have been learning to live in the moment. Despite this, I still find myself harboring that idea of "when life settles down."

This idea isn't serving me well. My mother, who passed away just a year ago, lived her whole life waiting for things to "settle down" and looking at the next thing. In many ways, it was a strength. It enabled her to overcome an often traumatic childhood, to raise five children, to complete a bachelor's and master's degree while working full time and raising those five children, to build a life of 47 years with my father, and to help him deal with Parkinson's and the cancer that eventually took his life. It also left my mother with a sense of discontent that she carried until the end of her life. She couldn't look back on her marriage without feeling the constant sting of widowhood. She railed against her aging mind and body, always wishing for something to be different. She was never content with what "was," always looking for what "should be."

That's a tough mirror to look into.

Even with everything I have learned in the past two and a half years that Alex has had cancer, one of my first thoughts when we learned of his latest remission in March, was that life was going to "settle down." I had visions of what that would mean for my summer break from teaching - all the plans I would make, now that we had a break from cancer.

Life has a funny way of filling the void. Alex is doing great, and we have done some wonderful things, but new obstacles have popped into the picture. John had back surgery the morning after we returned from our family trip to Disney. I broke my toe on July 4, and will have surgery July 19 that has a six week recovery period. I'll just be able to make it back to the start of the school year. I won't be on bed rest, but I will be limited in what I am able to do physically for the rest of my summer.

My dog, Tucker, taking care of my after I broke my big toe on the Fourth of July.

I'm disappointed, but am trying to stay positive. John's helping me with that. I recently made some comment about the two of us being "broken" this summer. He said, "we're taking time to heal."

We both appreciate that our medical problems are fixable, which is no small consideration. Once cancer enters your life, it helps you gain perspective on other medical issues.

I'll "miss" the rest of my summer, but I won't have to miss any of my school year.

I can think about the things I cannot do, or I can appreciate that I have a good reason to sleep in, read books, and let my husband wait on me. (I took my turn after his back surgery.)

Even though John's back needed surgery, he was able to go with us to Disney. He curtailed his physical activity, but he did what he could. He kept a positive attitude.

Alex still got his break from the doctors this summer. We have spent this time living in blissful ignorance about his cancer. He is in remission, and his next PET scan is coming up in a few weeks. We don't know what the scan will show, but for now, we're just pretending everything is fine. He feels well. He is active and busy at his group home, so our surgeries don't need to have a big impact on him.

There is no "when life settles down." Alex is getting a break from his cancer treatment. He is enjoying his remission, feeling well, and being active. John and I are busy dealing with our own health issues, thankful that we have the time to do so while Alex is not in treatment at the same time.

I realize that the time will come in the not to distant future that I will be buried deep in school work and will wonder bitterly why I was upset that I had to take it easy after my surgery.

One of the things I'll be working on during my recovery from surgery is to banish those words, "when life settles down," from my thoughts and words.

My life won't settle down, and I'm learning to be okay with that.

Watching Alex

It's taken awhile, but the unexpected news of Alex's remission is finally sinking in. Right after we got the news, I wrote about how the good news was actually difficult to accept in Cease Fire. Tomorrow it will be a month since the PET scan and I can't believe how long ago it seems.

The odd thing is that it all seems so distant, yet only six weeks ago he was in the hospital and we were fearing the worst. We were steeling ourselves for the next battle and so fearful that our options were gone.

Now, here we sit, with no idea how long this reprieve will last, but learning to enjoy it.

The most amazing part of all of this is Alex. Through all of it, we didn't know for sure what he understood, but felt strongly that he knew he was sick.  When he relapsed in October, then developed the awful rash to the clinical trial drug, his anxiety was at an all time high. We had assumed the steroids he had to take to treat the rash exacerbated the anxiety.

When he developed pneumonitis, he went back on steroids. This time, the dose was even higher and he's been on them longer. He's got about a week more to go and the dose is quite low at this point. The doctor has been gradually tapering him off. We're hoping that minimizes the rebound anxiety when he's done.

The weird thing is, there hasn't been any anxiety so far. That may not mean we're home free once he stops the prednisone completely - last time he had a sharp increase in anxiety for about four weeks after he finished the prednisone - but he is already acting drastically different than last time.

Once again I find myself desperately wishing he could tell me what he's thinking and feeling.

When the doctor told us the cancer was back and the treatment options weren't curative, Alex's anxiety increased dramatically. Then after the failed treatment, awful rash, and prednisone, it reached an all time high. (I also have to wonder how miserable the rash was given Alex's hypersensitive sensory system.)

Once we got the news that he was in remission, it was almost as if a switch was turned. I know that he's very sensitive to our moods and can reflect them back to us, and we were certainly upset and anxious when he relapsed, but this time he adjusted to the good news more quickly than the rest of us. The relief was apparent and immediate.

I know that he appreciates the reprieve from treatments and doctor visits. We've been seeing his local oncologist to monitor the prednisone taper and to monitor his lungs, and he is clearly not happy to be back at the cancer center. The appointments have been fairly short, which definitely helps.

He's feeling better than he has in a very long time - probably since before cancer. He has more energy and is napping less. His caregivers and the people at his part-time job all report what a great mood he's in. We're all watching him and marveling at how well he's doing - not just physically, but mentally and emotionally. Although I wish he could verbalize what he's feeling, I'd have to really not be paying attention to what he is saying through his attitude and actions.

When he was in remission last year, he was still recovering from his transplant so he was still not himself. He had a positive attitude, but not a lot of energy. He had issues with anxiety as well, more than he'd had since adolescence.

This time, it's completely different. It's like we're seeing the Alex we knew before cancer.

I'm not sure what the future holds, but all I need to do is take my cues from Alex. He is showing me how to live in the moment and appreciate this time right now and reminding me to be present and grateful. 

He's been teaching me lessons his whole life, why should now be any different?

Cease Fire

Things have been busy with Alex's cancer since we learned of his relapse in October. Since then he's tried and failed two different treatments, been hospitalized for pneumonitis, and gotten some very unexpected good news: Alex is in remission.

You'd think that with that unexpected good news, we'd be elated and feel an enormous sense of relief. If only it were that easy.

We know full well that we should be happy, and we are happy, but the relief just isn't quite there.

John came up with the analogy of a "cease fire."  The war hasn't been won, and we know it isn't over. The enemy has retreated, but we don't know for how long. That enemy is more than likely simply waiting in the wings, waiting to strike again. We just don't know when that day will come.

I've written many times that one of the things that I find most difficult about cancer is the uncertainty, and every time I seem to find a tiny bit of predictability the rug gets pulled out from under me.

We found out that Alex relapsed in October and were given treatment options that we were told were not curative, but that could keep the cancer at bay for a period of time, perhaps even years.

We embarked on a clinical trial that held few side effects, but required a tremendous amount of travel from our home to the trial hospital, 100 miles away. It meant being at the hospital days 1, 2, 3, 5, 8, and 15 of a 21 day cycle, then repeating. Side effects were non-existent until three days before cycle 3 was to begin. Alex developed a rash - a tiny redness in one eyelid that quickly spread to more than 75% of his body within 48 hours. The trial drug kicked his own immune system into high gear to fight the cancer, but it also kicked his integumentary system (skin, hair, nails) into high gear as well. The rash itched and was miserable. Two days into the rash and the day before treatment number 3 he had a scheduled PET scan. It showed a partial response to the trial drug, but due to the severity of the rash, he couldn't continue. The drug helped Alex's own immune system attack the cancer, but was toxic to his integumentary system. Three weeks of steroids and a week's wait were needed before we could being the next treatment.

In early January, he began the next promising immunotherapy: a relatively new treatment for lymphoma called Opdivo. He had four treatments; one every other week. We were told to watch for a cough because this treatment, while it has few side effects, can be seriously toxic to the lungs in a small percentage of patients. Things were going fine, he was feeling okay, and we developed a predictable routine. He had very few side effects.

Then we got a call on Saturday that he had a cough and seemed to have shortness of breath. It wasn't significant, so I waited to call the doctor until Monday morning. They had him come in, did a chest x-ray, and labs. It looked like some pneumonia in the lungs so they prescribed an antibiotic. He developed a fever on Tuesday, the doctor called us to bring him back in on Wednesday and they repeated the x-ray and labs. The pneumonia was spreading and there was a spot that was inconclusive for pneumonitis - an inflammation of the lungs caused by a drug reaction. They put him on steroids. About five hours later we were in the ER and his oxygen saturation was only 71%. They admitted him to the hospital and he spent almost a week on oxygen, had multiple x-rays, a CT scan, and a bronchoscopy. We needed to confirm that he had pneumonitis caused by the Opdivo before we could know how to proceed.

We knew to watch for a cough, but we had no idea that pneumonitis could spread so quickly. Within days, he developed lung inflammation over more than 75% of his lung tissue, which made it a grade 3 reaction. If he'd been on a ventilator instead of oxygen, it would have been grade 4. Grade 5 is dead. During this time they were giving high doses of steroids trying to get the inflammation under control and to improve his breathing. It was becoming obvious that the current treatment could not be continued, but we had not idea what would be next. When his specialist outlined treatment options in October, he had hoped Alex would get six months to a year on the trial drug, and another two years on Opdivo. We exhausted both in a few months. Those first few days in the hospital John and I truly thought that Alex might be out of options and he might never recover from this setback.

Alex, always a trouper, kept his positive attitude in the hospital. His nurses love him. John, Jessica, or I were with him throughout the stay - most of the time, more than one of us. John and I slept on the hospital cots.

After a week in the hospital, Alex came home for a week. I went back to work and John stayed home with Alex. Our doctor assured us that we were not out of options yet, but we didn't quite know what to expect.

Alex already had a PET scan scheduled. It was meant to be done after six Opdivo treatments to see if it was working. We kept the appointment so that we could assess the current state of his cancer and so the doctors could decide the next steps. When we get his PET scans, we travel to Froedtert for the scan, then see the lymphoma specialist the same day. He does a preliminary reading of the image. The following day, we were to meet with our local oncologist and begin the new treatment.

Alex had the scan and we met with his doctor. The doctor brought three images up on his monitor - October (relapse), December (after the trial drug), and current (after Opdivo.)

The scan was clear. No cancer.

We had not even allowed ourselves to anticipate the possibility. Honestly, I felt numb. I had worked so hard to steel myself for another disappointment and to be prepared for the next treatment. I didn't even know how to process the information. When we learned of Alex's relapse, we thought he would get treatment until nothing worked and he was out of options. We did not expect to get to this place of remission ever again.

We also had to process the fact that this drug worked tremendously against Alex's cancer, but were very toxic to his lungs. In the scan, his lungs looked like they were literally on fire. Due to the severity of the toxic reaction, he cannot continue with this drug.

I love Alex's doctor and his style and way of processing and sharing information works very well for us. He is honest, but has a very soft spoken and reassuring demeanor. He doesn't give false hope or placate you. Statistics tell us that the cancer is still lurking somewhere. It is almost certain to come back, but for now, we can enjoy this remission. It's a little hard to be joyful when you know that danger is just around the corner. It's hard to feel carefree when your experience tells you that cancer is much too complicated to allow you to be carefree.

So we really do think of this as a "cease fire." We have a break. More importantly, Alex has a break. His first real break in over two years.

The next PET will be in four months, unless his cancer symptoms return before then. In two months, we see his specialist to talk about other treatment options, including the possibility of a donor transplant. That is the only curative option, but one that is extremely risky. The chance of cure is 50%, but only 25% have a cure and a high quality of life without complications from the transplant. There is a 20% chance he would die from the transplant. There's a lot to consider.

We can forego the transplant and try other options to try to get him back in remission or slow the progression of disease once he relapses. He's not out of options yet. There's a chance that something new could come along while we're doing all of this. Another new drug was approved a few days ago.

We celebrated the good news by taking Alex to his favorite restaurant - Fazoli's. 

We are happy for the good news. and are looking forward to spending spring and summer enjoying this remission. We have a family vacation to Disney World planned for June. We won't squander this opportunity, but we are very cognizant of the specter that looms over our shoulders.

Line Up and Wait

John and I fly out of a towered airport. That means we need to contact the tower for permission to take off and land. Prior to take off, we follow an exacting checklist to make sure that both pilot and airplane are in a condition for safe flight. When the checklist is complete, the radio call sounds something like this:

Me: "Appleton ground, Cherokee 1599R is at the south T's ready to taxi for take-off, southbound, I have Lima (or whatever the appropriate call sign is for current weather).

ATC: "Cherokee 1599R, taxi to Runway 30 via November." (November is a taxi-way.)

The directions are precise and predicable. We follow prescribed procedures.

Once I get to the runway and do some more tests on the aircraft, I contact ATC again, this time on the tower frequency."

Me: "Appleton tower, 99R is ready to go on Runway 30."

Usually the response is:

ATC: "99R, Runway 30 is cleared for take-off, right turn to the south approved."

If the airport is busy, however, my instruction might instead be:

"99R, line up and wait."

That means I can get on the runway, but I have to wait for further clearance to take off. My engine is running, I'm ready to go, but I can't go just yet.

I feel like that describes my life right now.

Alex's cancer is like "line up and wait."

We've been told his cancer is "very refractory" and "resistant to treatment." We've been told the current treatment options are "not curable," but that they have kept other people's cancer at bay for "some time."

When we went through the clinical trial, there were a lot of appointments. To say we were disappointed when he developed a rash over more than 75% of his body three days before his third infusion would be a drastic understatement.

This week he goes for his third Opdivo infusion. He has tolerated it well so far, but starting yet another treatment has him understandably on edge. After a rise in his anxiety post-stem cell transplant, we made some medication adjustments that seemed to hold his anxiety in better check. Now with the latest new treatment, he's struggling a bit again. Who can blame him.

I hate that he can't ask us questions or tell us how he's feeling or processing this latest news. We've believed all along that he understands that he's sick, but we can't talk through anything with him.

I'm on edge as well.

This treatment schedule is easier on everyone. Alex is getting back to a somewhat normal routine at his group home. We go for treatment every other week for an afternoon. There are a few other appointments scattered here and there, but it is manageable.

This time, however, there is no end in sight. There isn't the count down of treatments we did with ABVD and ICE and Brentuximab. No, "six down, six to go."

I keep telling myself, and others, that I won't waste the time Alex has and I won't live from appointment to appointment and I try, but it's really, really difficult.

We're trying to live our lives as "normally" as possible, knowing that our normal has changed so much.

Alex is at his house, and he's comfortable. He didn't have good leisure skills to begin with, and cancer certainly hasn't helped that. He is tired a lot, and his anxiety compounds that. He naps daily, and spends a great deal of time in his room, in bed. He does get out with his housemates, rides along on errands, and goes on outings. I feel like his caregivers have a really good sense of when to push and when to let him be.

John and I are working, trying to keep with our normal routines as well. Sometimes it's hard, and sometimes it's a welcome distraction because when I'm in the classroom I'm able to focus completely on my students. There are bills to pay and responsibilities to meet, so there isn't an option to just retreat. I also know full well that retreating wouldn't be healthy for any of us.

Sometimes I'm exhausted putting a good face on all of this for others. I know people want to make us feel better, but I often feel like I'm making them feel better. "Yes, Alex is feeling okay." "His rash is gone." "Maybe we'll have time to find a new treatment."

Other times I feel guilty for "making such a big deal" out of all of this. Alex is feeling okay, right now. The doctors haven't given him an "expiration date" and I feel like that means we're measuring time in years, not months.

I also feel guilty that Alex is not at home with us all the time, yet I know it's better for all of us to continue his routine as long as possible. We can work because he has caregivers. We get a break from caregiving, and he gets a break from me hovering over him.

We do see him often - every few days - and make sure it is not just for medical appointments. Alex really isn't a "bucket list" kind of guy, but we're trying to make as many memories as a family as we can. I'm not sure exactly what he wants, but we're trying to do what we think gives him the most comfort and enjoyment.

Even though he feels okay now, I know his health is precarious and cancer is unpredictable and capricious.

All of which leads me to this place, this point of throwing up my feelings all over the page, trying to make sense of all of this. Trying to make sense of the fact that my son is slowly dying and that the best we can hope for is to delay the inevitable. Wondering if anyone at all will make it this far into my rambling post.

At the same time I'm trying to expose what's real and raw, I fell compelled to end by making you feel better. "We'll be okay." "Our family is strong."

I do appreciate the fact that I have time with him now, and I do appreciate that he is feeling pretty good. I am trying so hard to live in the moment and ignore the future. I just wish that holding it all together didn't take so much energy.