If I Could Read Your Mind...

If I could read your mind, love
What a tale your thoughts could tell
Just like a paperback novel
The kind the drugstores sell....

"If You Could Read My Mind," Gordon Lightfoot


What would Alex tell us if, suddenly, he were able to communicate his deepest thoughts?

That is something I wonder daily. I remember the first time I heard the expression "not being able to speak is not the same as having nothing to say."

People sometimes assume that because of Alex's disability he does not have deep thoughts, or maybe they just don't think that much about it. Those are the people who comment with amazement after spending time with him their realization that he has "a lot going on."

We try to read it in his face, in his body language, and with the communication he does possess. We've tried so many ways over the years to help him communicate. Although we've had break throughs, his communication is still quite limited and confined mostly to requests and commenting about concrete things through the use of his communication app on his iPad.

When he was about 8, his teacher suggested we try a communication system called "PECS." This Picture Exchange Communication System involved creating small, square icons and teaching him to exchange the pictures for concrete objects. I attended a two day training along with Alex's teachers. I was so excited that I started working with Alex as soon as I got home. You start with something concrete and motivating. I taught Alex to request Doritos.

Within days his communication exploded and he was able to string together words to create sentences such as "I want Doritos and Hi-C and swing." He would look all over the house for his dad or me to make the request. PECS showed him how to initiate communication and that part of communication was having a communication partner.  It was a huge break-through. I learned to love the sound of velcro as we could hear him putting together his sentences.

I bought a laminator and a scanner and created PECS boards for home and school. This was circa 1998, and we didn't have the internet to find pictures or digital pictures. I remember scanning actual packaging from Doritos and Mac and Cheese and whatever he liked to make the pictures. I also used icons from a program called Boardmaker. At the training, they said students were significantly more likely to be successful if they used the PECS system at home and at school. I made the pictures and set Alex up with everything he needed. John and I have always had the philosophy that we wouldn't ask school to do more than we were willing to do ourselves at home.

Alex did great with PECS, but eventually his book was large and cumbersome and we could tell he was ready for more. He used it primarily for requesting food and activities, and his communication was basic, but he had learned what communication was.

Next, his teacher suggested an AAC device. We had to go through an agency, conduct a trial and collect data to prove he could use the device to let us know if he were sick or injured so that his doctor could write a prescription for it so we could get insurance approval. It took about a year to go through the whole process, but we were able to acquire an $8,000 DynaVox MT4.

By today's standards, the unit looks heavy and clumsy. In the early 2000's, it was amazing. We could have layers of pages and hundreds of vocabulary choices. The unit had a voice output, so Alex could communicate more independently. It was, in its day, considered portable. He carried it back and forth between home and school and we tried to take it everywhere we went. We took it out in public, and he learned to order food in restaurants and we tried to integrate it into our daily lives. It wasn't perfect, but it made a difference.

We took Alex to visit his sister, Jessica, at MIT her junior year. While we were there, we had the opportunity to visit the MIT Media Lab and meet with some grad students working with Dr. Roslyn Picard. They were developing biometric devices for use with people on the autism spectrum. They spent a couple of hours with us, showing Alex some of the devices they were working on. It was an incredible experience.

It was about this time that apps for iPods were beginning to explode. On our drive home from Boston, John and I kidded that what we needed for Alex was a communication app. Once we got home, I starting looking for something and discovered an app called Proloquo2Go. It was in beta testing, and we bought it for Alex the day it was released. That was in spring of 2010.

Alex would be described as someone with "complex communication needs." The whole area of AAC is undergoing a great deal of change, and I'm doing my best to keep up. I was trying to figure out how to help Alex to the next level of communication when his cancer was diagnosed, so new communication ideas took a back seat to cancer treatment. Now we're back to trying to help Alex expand his communication.

My hope and my goal is to someday make that break-through to help Alex communicate beyond asking for pizza or for a ride in the car.

We've been practicing with his P2G (Proloquo2Go) on his iPad mini and he's made some interesting comments lately.

At a recent chemo appointment, he was talking about his blood draw and labs. Then he exited that screen and found the button for "new topic." This was not a word I had modeled and it was on a page I hadn't seen him access before. Coincidence? Perhaps. But I like to think it was purposeful on his part.

Alex has shown many times that he has the persistence necessary for communication. He has learned to try to repair communication breakdowns. I really feel he is ready to take a next step. And I know I am so ready to finally hear what he has to say.

Despite his communication challenges, Alex manages to make his point, often in interesting and amusing ways. We have some favorite stories of his communication attempts, particularly when he had to persevere because his family was too thick to catch on.

White Chocolate Almond Bark - when Jess and Alex were much younger, maybe around middle school age, the three of us travelled to Door County for the day. This is a tourist area in Wisconsin with beautiful scenery and lots of small towns with a variety of shops. We were in a candy shop, and Alex started pointing at some candy in the display. It was white chocolate almond bark. He doesn't like nuts and, to my knowledge, had never had white chocolate. You should also know that Alex is someone who does not try new foods easily. It can take a year to entice him to try a food that he is curious about, and it's almost impossible to get him to try something new that he isn't interested in.

So I told him no, he didn't want the white chocolate almond bark. Well, we went to several more candy shops that day, and in each shop he asked for the white chocolate almond bark. He couldn't verbalize it, but each time he found it in the glass display case, and touched the glass and looked at us. Finally, I relented and bought him some. He ate it most enthusiastically. The boy who never tried new foods ate all of this candy I didn't think he'd ever seen before. That day still stands out to me as a time when I learned that Alex was in fact capable of knowing his own mind and finding a way to get his point across. 

Jessica and I still laugh about this today, in part because we were so thick and didn't listen to him, but also because we visited so many candy shops that day.

Firefly by Joss Whedon - another favorite family story is how Alex introduced our family to the series Firefly by Joss Whedon. We were in Best Buy, and Alex chose a random (or so we thought) DVD off the shelf. It was a box set of a tv series we had never heard of. Once again, we told him "no," he didn't know what he was asking for. Over several months, each time we visited Best Buy, he would go to the display and find Firefly and take it off the shelf. Eventually, we decided to let him buy it. We thought for sure he would lose interest and that he didn't know what he was asking for. Even though our family already loved Joss Whedon and were big Buffy the Vampire Slayer fans, we didn't know about Firefly. 

We watched the series when we got home. It is now a family favorite, and watching Firefly cemented our love of all things Joss Whedon.

I still don't know how Alex knew about the series, but I no longer think his choice was random. I believe he knew what he was asking for.

Two by two, hands of blue - my third story happened just recently. Alex and I were at a craft store, buying supplies for my classroom. He saw something that caught his eye, and made a bee-line for a display. It was a paper mache hand. He took it off the shelf, looked at it, then put it back. We went to another part of the store and I was looking at items I needed for my project at school. Suddenly, he turned and bolted away. I followed him, and he went back to the display of the hands. He took one, then tried to take all three from the display and put them in our cart. I only let him buy one. We then went and met John for dinner.

I told John the story, and after dinner I went to do errands and he took Alex back to Alex's house. On their way, John had to stop at a store to pick something up. It happened to be next door to the craft store with the hands. It was a good thing I had filled John in on Alex's apparent obsession with the creepy hands, because as they walked toward the tool store, Alex tried to divert John and pointed to the craft store. They did not go buy additional hands, but we do have the one at home that Alex got.

When I told Jess the story, she reminded me about the Buffy episode called Hush and "two by two, hands of blue." I'm not sure what Alex's purpose with the hand was, but I bought some craft paint and I'm going to see what color he wants to paint the hand.

Someday, I hope Alex can explain to me what he was thinking in all of these situations. I hope he can tell me how he felt about his cancer treatment. I hope he can tell me his hopes and fears. I'd even be okay with him telling me all of the times I got things wrong. 

In the meantime, I'll keep doing my best to pay attention. I'll remember the lessons I've learned when I assumed that I knew better, even though Alex was doing his best to tell me what he wanted. And maybe, just maybe, someday, we'll help him unlock all of those thoughts I know he has inside.

Reluctant Trailblazers

Before we became “cancer parents,” my husband and I were “autism parents.” We foolishly thought that the challenges we faced as parents of a child with autism would be our greatest challenge. The universe, in its infinite wisdom and with a perverse sense of humor, replied to our arrogance with “challenge accepted.” We found ourselves as parents and caregivers to a nonverbal young adult with autism and cancer.

            As soon as Alex’s cancer was diagnosed, I tried to research the combination of “cancer” and “autism” to learn how others have handled this combination. I found nothing. No resources that fit our particular set of circumstances. Once again, we found ourselves in the position of being what I’ll call “reluctant trailblazers.”

            Alex’s autism diagnosis came in 1992, and the change in the understanding of autism and the resources available between 1992 and today is difficult to comprehend. Both were in short supply in those days, and we found ourselves having to become autism experts. Throughout Alex’s school career, we learned hand in hand with his teachers, or found ourselves becoming the experts who needed to lead the charge.

            In home therapy? Nope, not available at that time. I went to workshops and seminars and took grad classes. I learned about PECS, and AAC, and ABA, and social stories and a whole host of strategies. I learned a new language of supporting someone on the autism spectrum.

Our goals were to help Alex become all that he could be. He was an integral and active member of our family and our community. We taught others about autism by having him out in the community – whether it was learning to ask for help when he had a meltdown at Disney, or asking for accommodations on an airplane or in a museum, or having him order his own food in a restaurant using an assisted technology communication device and then an app for his iPad.

ADHD and autism, OCD and autism, anxiety and autism – all of those comorbid disorders were just beginning to be understood. How and what to medicate? We had to find doctors to work with. We still drive over 100 miles to work with a psych who understands Alex and understands autism.

As Alex prepared to transition out of the school world, one I understood intimately as an elementary school teacher, we faced the unknown yet again. How could we support him in becoming as independent as possible, and in establishing a life outside of his life with us? We can’t live forever, and we fundamentally believed that Alex deserved the same thing that other young adults want and need – the ability to grow up and go out on their own.

            The system isn’t particularly suited to that goal however; at first we were told Alex wouldn’t be able to move out (with government funding) until my husband or I died or became too old or too ill to care for him. They could also fund Alex if he or our family were in crisis. The goal of providing a smooth transition to help him achieve independence wasn’t really on the radar – at first. Eventually, we got funding and found a match for Alex and he made a successful transition to a small group home. He lives with three housemates, all young men with developmental disabilities, and has around the clock care.

            We thought we had things figured out for Alex, and John and I were figuring out how to be empty nesters. Alex’s sister was out of college, engaged to be married, and working in California. Alex was transitioning well to his group home, only 20 minutes away, and we could see him often. John and I had time for hobbies. I learned to fly, and we spent most of our free time in aviation related pursuits.

            Then cancer came calling. Alex had been in his group home for just two years. He started showing strange, seemingly unrelated health issues which I now know weren’t unrelated at all. They were all pretty ambiguous, until I found a lump under his chin. Surgery and biopsy revealed Hodgkin’s Lymphoma.

            My first reaction was that visceral reaction I think everyone must feel when you hear the word “cancer.”

            Then, immediately, “how will we handle this?”

            This is a young man that it took us six years to get to tolerate a haircut without a major meltdown.

            One who took years to feel comfortable in the dentist’s chair.

            A man who has a lot of anxiety.

            A man who cannot speak for himself.

            I looked for resources for parents of nonverbal adults with autism who have cancer.

            Once again, I came up empty.

            Once again, we’d have to figure it out on our own.

            Reluctant trailblazers.

            That was over a year and a half ago. Thank goodness I couldn’t comprehend everything Alex would have to endure, but endure he did.

            He has been in remission from his Hodgkin’s Lymphoma for almost six months. He currently receives maintenance chemo once every four weeks; a short, 30-minute infusion. Labs, consult, pre-meds, and chemo only take two hours. Relatively speaking, it’s a walk in the park. I can’t believe this new world where we live in that a two-hour chemo appointment every four weeks seems minimal.

            His front line chemo, 12 ABVD treatments over the course of six months, failed. After that, he went to autologous stem cell transplant at Froedtert. His “re-birthday” was December 28 – transplant day. We’re half-way through sixteen months of maintenance treatment.

            We had to be his advocates, and work with the medical professionals to figure out how his treatment plan was going to work. When Alex was a little boy and he needed a shot, we could hold him down. That wasn’t going to work with a grown man.

            We have had some bumps along the way. His treatment plan has required adjustments and modifications. It has been a true team approach, with Alex always at the center.

            We aren’t just his parents anymore; we are his legal guardians. It is our responsibility to make his medical choices for him. At times, that feels overwhelming. Are we choosing for him what he would choose for himself if he could?

            In the hospital, we taught his doctors and nurses what Alex’s autism was all about. They were excellent listeners and quick learners. We were there to be his voice and his interpreters. 

            What are some ways that Alex’s autism has impacted his treatment? There are so many. From the simple – he can’t answer the questions about how to rate his pain on the pain scale and we can’t convince him to measure his output in the bathroom, to the complex – he has to be sedated for every PET and CT scan, he has pulled out PICC lines and IVs when he wasn’t being watched, he can’t be left alone in his hospital room so he had to have someone with him around the clock which was, for the majority of the time in the last year and a half, my husband and/or me, we try to have at least two people with him during chemo and procedures in case someone needs to go to the bathroom or get food, and more.

            We’ve had to learn what the procedures are so that we could adequately let the doctors know what accommodations would be needed. We had to be able to prepare Alex so he would know what to expect. We had to convince doctors to let one or both of us in procedure rooms because we knew that was the only way the procedure would get done.

“If you want to stick a catheter in his jugular while he’s awake, you’re going to need one of us there holding his hand otherwise, good luck with that.”

“Leave a catheter inserted in his jugular and send us back to the hotel room and come back for another round of stem cell collection tomorrow? Umm – no.” So they took it out and reinstalled it again the next day. Typical procedure? No. Preferred procedure? Definitely no. But it’s what needed to happen for Alex.

Thanks goodness for a transplant coordinator, doctors, PA’s and nurses who were willing to listen. Together, we figured it out. Some issues we predicted; some surprises came along the way and we dealt with them as they came.

            So now we can add cancer experts to our resume. We never found that website, or pamphlet, or book that told us how that would all work. I suppose we could write it now.

            Next step – living as a cancer survivor and getting back to the work of letting him grow up and become more independent.  

            I confess I’m not even comfortable using the word “survivor” yet, like I don’t know if I’m tempting fate to smite us down for even daring to use the word. But, at least for now, he’s in remission, and we’re figuring out this new normal. He’s back in his group home, going places with his housemates, going to his part-time job, and getting stronger day by day. And we’re back to trying to learn to let go.

           

Anxiety, Autism, and Cancer - Oh, My!

"Lions and tigers, and bears, oh my!"

So goes Dorothy's refrain in the Wizard of Oz as they are walking through the enchanted wood.

Then they meet the Cowardly Lion.

In the end, The Wizard gives the Cowardly Lion a medal which is meant to represent Courage and we as readers assume that all his problems will disappear. In real life, it isn't that easy.

I've heard it said that courage is not the absence of fear, but acting in spite of it.

Alex has plenty of courage and uses it daily in a life that challenges him at every turn.

Anxiety has always been a big obstacle for Alex. Combine that with sensory processing and communication issues and there are many things that most people take for granted that require a lot of effort on Alex's part.

Getting a haircut?  It took about six years of very thoughtful and intentional supports to get to a place where Alex could get a haircut without having a full blown panic attack. (See "Haircut" - Haircuts)

Going to the dentist and getting your teeth cleaned? That also took many years of intentional effort and supports.

Alex has always struggled with leisure skills. It took many years of careful teaching and planning to learn to go to the movies, go out to eat, visit zoos museums, and travel.

As he's gotten older, some things have gotten easier, and other things that he loved when he was younger have gotten more difficult. My theory is that as he's gotten more engaged in the world and people around him, some things have gotten more overwhelming. Things that once seemed mastered we're at a point of relearning.

Alex has shown tremendous courage throughout his illness and cancer treatments. Often, with that trademark smile on his face.

Alex - Day +6 post auto stem cell transplant.
January 6, 2016

Alex - Six Months post auto stem cell transplant.
June 27, 2016

There's Alex's serious face, though. The one he wears when he's calling up all the courage he needs to do what needs to be done. That might be cancer treatment, but it might also be getting a haircut or going to a movie. Lately, the anxiety has crept back into Alex's daily life more and more. It varies quite a bit from day to day and can be very unpredictable. It turns out that anxiety is not uncommon for cancer patients, and it also isn't uncommon for it to continue after things appear to be getting better. The fear of relapse can be overwhelming. The after effects of chemotherapy and treatments have a lasting effect on fatigue and anxiety.

I know it's frustrating for Alex, and it's frustrating for his dad and me as we try to support him. It feels like we've lost so much ground in what he'd been able to do. He has to relearn how to go places and do things he had gotten so good at. And we never know which days will be good ones and which will be difficult ones.

His birthday was one example. He recently turned 26. We had a low-key party at his sister's house. John's sister's family was there, and our family. It was a fairly small group, and all people he's very close to and comfortable with. We had one of his favorite meals (pizza) and watched a movie. He was anxious and overwhelmed. It wasn't the party I imagined, and I don't know how much fun he had.

This weekend is another example. I planned a short family trip. John, Alex, Tucker (our dog). and I went to Door County for three days. The resort we stayed at had small, pet-friendly cottages so we had our own space. We were going to keep things low-key, go for walks and drives (Alex likes to go for drives) and watch movies. Alex was anxious on the drive, and anxious when we arrived. We got out a little bit, but not much. We got take-out food because I knew going to a restaurant would be too overwhelming.

I'll spare you the blow-by-blow, but it was simply too much for Alex. We arrived in the afternoon on a Friday, and by Saturday morning he was ready to go home. We got some take out food for lunch, took a leisurely (well, leisurely for us) drive to see the sights and went back to the resort. He tried to take a nap, but got up and starting asking to go home.

This wasn't something he had to do (like cancer treatment) so we felt he should have say in what happened. From a capacity-building perspective, we were successful. He stayed away from home at someplace new (although he's been do Door County lots of times, this resort was new to us) and did a few things. We ended up deciding to cut the trip short and came home Saturday evening.

Today, at home, in familiar surroundings his anxiety has lessened greatly. The smile is back.

It was the right decision to come home. I think it was still the right decision to go, because it helped to build capacity, even though it didn't turn out like I hoped it would. But, in the end, it was the right decision to come home early.

The three days of relaxing and fun I imagined ended up to be 30 anxious hours. We planned a respite from cancer, which it was, but it did not end up to be a respite from anxiety and autism. I'm sad that it was so difficult for Alex, but I'm proud of him for how he handled things. He handled his anxiety well, and he was able to make his wishes known and have some control over his life.

Hopefully, we rebuilt some capacity and maybe the next time we try it will go better.

In the meantime, he's got a couple more days to hang out with us at home before he goes back to his house, so we still have some family time with no cancer treatments. Our main goal was to get to spend some time together, and that can happen anywhere that Alex wants to be.

The Fallacy of Waiting Until Life "Settles Down"

Life is what happens when you're busy making other plans.
-John Lennon, from "Beautiful Boy"
-cartoonist John Saunders, Reader's Digest, 1957

One of my favorite quotes is "life is what happens when you're busy making other plans."  Although it's been attributed to John Lennon, and was a line in the lyrics of his song "Beautiful Boy," a little digging reveals that it was attributed to cartoonist John Saunders in Reader's Digest in 1957. It is a quote I try to take to heart.

I've written multiple times about the lessons cancer has taught me - is still teaching me. One that I am working on is to stop saying, "When my life settles down."  I've been saying it and; worse yet, believing it, for my entire adult life. I repeat it without thinking it through.  Yes, I have a busy life, as many of us do. Yes, I don't always feel in control of the "busy-ness" of my life. The truth is that there is much in my life that is of my choosing. And, like most everyone, there are things in my life that are not of my choosing. But every bit of it is just a life.

This lesson is like a two-by-four upside by head once again as I contemplate the fact that Jessica graduated from college, and Alex finished going to school, five years ago this June. I thought that not having Alex in school, and not having Jessica in Boston and in college, would mean things would "slow down." I wasn't entirely sure what was next, but I somehow thought the pace of our lives would change - would lessen, become somehow more "manageable."

That thought is laughable.

Looking back five years instead of forward, I could not have scripted, nor even imagined, the five years we have lived through. Not that it's all been bad, but it has been filled with many significant events and emotions.

It's a darn good thing that my crystal ball didn't work, because I wasn't prepared for what we have been through. As usual, life has to unfold in its own way, in its own time, in order for me to absorb it all.

Five years ago, my mother-in-law was still "her." She was vibrant and funny and loving and an important part of our lives. We lost her painfully, slowly, long before her death a year ago.

My mother was living independently and beginning to have some serious health issues, but still managing to take care of herself. The past three years have been tumultuous for her (that's putting it mildly, to be frank), and she is now living safely and contentedly in a great facility. I am grateful that she is well cared for, but I see her slipping away physically and mentally.

Jessica graduated, spent three weeks at home, and then John and I drove her to her new life and dream job in California. We visited her many times and watched her grow into an adult and began really figuring out this whole parent-of-an-adult relationship. She flourished in her job, she married, and then she got an out-of-the-blue job offer in Wisconsin. This was something none of us ever imagined would happen. But here she is, less than 25 miles away, in her new home, with her new husband and two dogs, finding her way at a new dream job.

We have a wonderful son-in-law as part of our family. If I had hand-picked someone for my daughter to marry, I could not have done better. He is smart, talented, funny, and fiercely loyal. He understood right away all that comes with falling in love with someone with a special needs sibling. We are all so very lucky to have him in our family.

Three of my four siblings have faced significant health issues of their own over the past five years. My oldest sister has lost her son and her husband, and welcomed twin grandsons. As we grow older and face loss, illness, and other challenges, I feel that we've grown closer.

We've lost a number of friends and family members over the past five years. It just never gets any easier. Soon we will mark the first anniversary of our friend, Jeremy's, passing.  Rusty's dad, Mark, died only four and a half months ago. My brother-in-law, Don, passed away just over three months ago. I don't think he ever got over the death of his son, almost five years ago.  He seemed to age overnight. These are only a few of the people we lost. So much loss in so short a time, and each one leaves a gaping hole and a grieving family.

Alex moved out three years ago. He was (is) thriving in his new home - becoming more independent and forging new relationships. He had a part time job and blossomed.

John and I were "empty nesters," figuring out life with no children at home. I learned to fly. I joined an EAA chapter and became secretary and newsletter editor. We bought a plane. John and I traveled. We visited Boston, New York, Chicago, Washington D.C., Maine, Niagara Falls, LA, San Franciso, San Jose, London, Disney World - trips with and without our children. Things we could only dream about doing as young parents.

Then cancer came calling. Our choice was to let it crush us, or stand up and fight. That choice is no choice, not really. We found strength within us we didn't even know was there. We became closer as a family. We learned how beloved Alex really is. We learned who we could really, truly, count on.

Alex is in remission and doing well.  I don't yet feel like we're entitled to call him a "survivor." I'm not sure how much time has to pass, or even if there's a "rule," but it somehow feels like tempting the fates to use that word. His next PET scan is in three weeks.  I'm already getting nervous.  I don't want to miss this moment by worrying.  We've had many wonderful moments with him in the 4 1/2 months since his transplant.  I hope there are many more to come.

I am trying to embrace the lesson that our old life is gone, that the overused phrase "new normal" applies to us now. We are not the same individuals, nor are we the same family, that we were before Alex got cancer. I don't really understand exactly what this "new normal" means for us.

I don't feel invincible. I feel like I can't afford to waste a moment. I feel like the moments need to be savored more, enjoyed more, embraced more, but I don't really know what that means. Life still has bills and work and responsibilities, yet everything feels different.

I don't know what the next five years will bring. For the first time in my life, I don't really want to know.

"Where do you see yourself in five years? in ten years?"

I can't answer that question.

I doubt that my life will "slow down." I can't predict what will happen. I can't live in fear. I have to believe that whatever unfolds in the next five years I will be strong enough, and wise enough, to embrace it.

And I hope I have learned to have the good sense to appreciate and relish all that is good.

Mid-Life Crises and the Meaning of Life

Life's a piece of shit, when you look at it
Life's a laugh and death's a joke, it's true
You'll see its all a show, keep 'em laughin as you go
Just remember that the last laugh is on you

Monty Python - Always Look On The Bright Side Of Life Lyrics 

I've always approached my life with certainty - I knew where I was headed, and why.

I've had to learn, repeatedly - because the lesson comes hard for me, that I can't control everything and that I must make many adjustments.  (Read Turbulence.)

I'm told that the summer before kindergarten, I planned what courses I would take by writing it all out on paper with a crayon.  My older sisters were in high school and planning their course work, so I thought I should do the same.

I would take reading, art, and music.

I would not take math or PE.

Mom told me it wasn't up to me.  There was no choice in kindergarten.

Rats.

As an adult, my plan has included my family and a career I'm passionate about.  It's included community service and a variety of pursuits - theatre, travel, aviation.

I didn't grow up wanting to be a teacher.  During my high school and early college years, I envisioned life as a family attorney or in politics, but I had an epiphany when my "fall back" plan of a degree in elementary education on my way to law school turned out to be what I was meant to do.  When I started the courses that took my into classrooms with kids, I felt I was "home."  I knew that was where I belonged.  I wanted to make a difference.

Even as a young mom, devoted to my family, I didn't want to leave teaching.  Aside from obvious financial reasons, I worked for a purpose.  Leaving my own family was bearable because I was making a difference in the lives of others.  I liked the personal challenge, the creativity, the autonomy. Teaching is hard and rewarding work.

John has likewise been devoted to his work.  He is a born problem solver, and the favorite part of his job is finding solutions to problems.  He doesn't like being away from home, but he loves start ups. He has many stories of hours and days in a mill starting up new machines - times where he would rotate through 24 hours of shift changes and not have left the mill himself.  He has long standing relationships with his business partners and the people he works with.  Although John is a part owner of his business, and has been for almost 25 years (I really don't remember exactly how long), he will never, ever say a colleague works "for" me.  It is always works "with" me and the fact that he is an owner will only come up if it is truly relevant to the conversation.

For the first time in my life, I am struggling to find the meaning and the purpose.

Maybe it's just a stereotypical mid-life crisis.

Maybe I should have been trying to "find myself" decades ago and I'm just behind.

I don't know.

Teaching is hard work, and it's really a hard time to be a teacher right now.  I know that many of you think teachers are whiny, and I'm sorry that you feel that way.  I don't need to be adored, but it's really hard to be vilified.  There's been lots of action on the political front, blaming all sorts of things on teachers.  That's hurtful, but not as hurtful as the friends, acquaintances, and even some family members who have piled on.  I don't mention this to start a political debate about teachers - that's a conversation for another time and place - but to say that, as a teacher, that message is hard to take.  It is painful.

Even through Alex's illness and transplant, I was driven by purpose - taking care of Alex, taking care of my students, taking care of our family.

Today, Alex is day +128 post transplant, in remission, but early on.  I am learning (or trying to learn) how to live with the specter of relapse hanging over our heads.  I am trying to appreciate that today is a good day.

But I find myself with a whole lot of "YOLO" going on.  That's all great in Facebook memes and pop culture that tells you to live for today, but it isn't that simple.  I have an established career that I love, I have responsibilities, and bills to pay and a retirement to save and plan for.  I'm only 53.  I'm not ready to retire, but I find myself wondering, what next, what now?

I've lost the fire, the certainty of purpose that I knew what I was doing.

A year and a half ago, I understood my life.  Then cancer came calling.  And I had a new purpose - save Alex.  Save Alex, and try to keep the rest of my life going at the same time.

And now Alex is doing well.  He's recovering.  He's in remission.

But my old life doesn't feel the same.  I'm not the same.  And I can't tell you yet what that means.

I do know that cancer makes you re-evaluate everything.  I know that's not a news flash to anyone else who has gone through this, and I also know that I'm not the cancer survivor, but I am a survivor of sorts.  Alex's fight was our fight because he couldn't do it alone.

I feel like I don't have time to waste, and I'm afraid to put my life off until later.

In the past year and a half, I've also lost several people who I care about. People who are gone too soon. Lives that were not yet finished.  It makes you wonder and it makes you re-evaluate.

I don't have the answers; just the questions.

Spending time with my kids makes me happy.  Spending time with my husband makes me happy. Flying airplanes, friends, my dog - those things bring me joy and contentment.  I'll keep doing those things as much as I can while I try and figure the rest of things out.

I'll take a cue from "The Meaning of Life" from Spamalot.

Always Look on the Bright Side of Life

Breathe

Today has been a fun day.  I'm beginning to feel, finally, like I can breathe again.  It seems I've held my breath for over a year.

This morning John and I volunteered at the Pancake Breakfast and Young Eagle Rally for our EAA Chapter.  John flew six kids, and I worked the registration table.  It was unseasonably cold and there was snow on the ground (get your act together, Wisconsin), but visibility was spectacular and the air was smooth as glass.

John has been a member for a number of years, but I just joined the chapter three years ago.  It's one of the things we threw ourselves into when Alex moved out of the house.  Bright blue skies in what has been a dreary late winter/early spring enticed many pilots to our pancake breakfast, and our chapter flew 32 Young Eagles this morning.

John with his 99th and 100th Young Eagle.

Our 1967 Piper Cherokee.

I enjoyed the morning immensely, and as I was walking around saying hello to all of my new friends this morning, I had the good sense to savor the moment and the friendships we've made.


After the rally, I flew the short hop from KOSH back to KATW.  It still feels surreal to me to be able to say, "I flew an airplane today."

This past Tuesday we had labs and a clinic visit with Alex's transplant oncologist.  It was our first visit back to Froedtert since February.  It felt good to go back with Alex doing so well.

The lab was very busy, which isn't really unusual.  It made for great people watching.  I remembered our first few visits there, and how overwhelming everything felt.  There was a couple sitting across from us, and I have a feeling that this was their first visit.  The husband was pensive, and kept shifting in his chair as if trying, and failing, to get comfortable.  He was called in for his blood draw before Alex.  We saw them later in the clinic that we go to.  I vividly remember our first visits there.  I remember wishing I could have a crystal ball (I seem to do that a lot) to know how everything would turn out.  As is usually the case, I eventually realize that it's a darn good thing I didn't have that crystal ball because I wouldn't have been ready to deal with the scope of what would be expected of me.  I tried to somehow imagine that we could have a month or two of treatment or some surgical procedure and everything would be "fixed."  Nope.  Not even close.  We're fifteen months in and Alex has 13 more maintenance chemo treatments to go, which will take about ten more months.

But we've come a long, long way.  A year ago, Alex almost died.  And in order to cure him, they had to administer a treatment that almost killed him.

Alex - Feb. 7, 2015
Four days before his cancer diagnosis.

Alex - Feb. 3, 2016.
One year later.  34 days post transplant and the night before getting a PET scan that would reveal remission - at last.    

Alex - April 5, 2016.
Waiting to see his doctor at Froedtert Hospital in Milwaukee.  Day 99 after transplant.

When we got home from the pancake breakfast, both John and I took a lazy afternoon nap before we went to pick Alex up from his house for an overnight visit.  This is a visit with no major plans and no doctor appointments.  Just time to hang out.  We went to Dick's Drive-In (the local drive-in that's only open seasonally; this was Alex's first trip for this spring) and for a long ride.  Alex doesn't really have a lot of hobbies or things he likes to do, so one thing we've always done is gone on car rides.  When he was little, it calmed him when he was struggling.  Today we had beautiful blue skies and at list a hint of spring, even if the mid-30 degree temperatures contradicted the mid-April date.

Tomorrow we're meeting Jess and Rusty for lunch, and then we'll take Alex to the EAA Museum for a bit.  We're working on rebuilding his stamina, both from a physical standpoint and an anxiety standpoint.  He hasn't been out and about much in recent months, and going places can take a lot of effort for him.  It's nice to see him being more comfortable and able to do more.

Today, though, just felt good.

A few weeks ago, in my blogpost called "Turbulence," I wrote about the difficulty John and I were having adjusting to our "new normal" now that we're through the worst of Alex's cancer (that's hard to even write because I hardly dare write it or think it or speak it, for fear I'll jinx him somehow). Since that post, I am finally starting to feel like I can breathe.  Things are feeling a little lighter.  And I'm starting to really believe that even though I'm not where I want to be yet, that's okay and I can see our future on the horizon.

Today I flew an airplane. John and I volunteered for our EAA chapter event.  We saw our daughter and son-in-law.  I took a long nap.  John, Alex, and I had dinner and a ride, and now there are brownies in the oven and we're watching a movie. Today, life is good. Today, I can breathe.

Look at all that hair!  Alex at our house - April 9, 2016.

Alex baking brownies.  He's always loved helping in the kitchen.