Wednesday, June 24, 2015

Father's Day

We had a nice, quiet Father's Day.  Jessica called her dad in the morning to wish him a Happy Father's Day.  We picked Alex up in the afternoon to spend a few hours and have some dinner.  He wasn't feeling very well.  They've warned us that the cumulative effect of the chemo will likely catch up with him.  He was tired and just not himself.  My dad used to describe days like this as "feeling kind of punk."  John and I wondered if Alex was experiencing bone pain and/or discomfort from the Neulasta.  That is a common side effect and, of course, Alex can't tell us.  All we can do is observe.  So we gave him some Advil, picked up a pizza, and hunkered down on the couch for a marathon of Myth Busters.  We also decided to have an impromptu sleepover and keep Alex with us for the night.  Except for the part where Alex didn't feel well, and that the reason was cancer, it was a nice Father's Day.  Our lives never lack for being busy, so quiet family time is always appreciated.

I also did a lot of reflecting on the day.  (Really, it doesn't take much to get me to reflect.  I tend toward being an "over-thinker," and I get quite sappy at Hallmark commercials, kids' books, and dog videos on social media.  I recently learned that there's a website called "Does the Dog Die?" to save people such as myself from being blind-sided at movies.)

Anyway, I was thinking about the meaning of Father's Day, and how the day brings different meaning and emotions to different people.  I thought about my friend Kate, marking the first Father's Day without the love of her life and father of her children, only a couple of short weeks after his death.  I thought about her husband, Jeremy's, parents, marking Father's Day without their beloved son.  I thought about my friend Kaitlyn, celebrating what may be her dad's last Father's Day (have I said lately that cancer sucks?).  I thought about missing my own dad, who I lost when I was only 31.  And I thought about many family members and friends who have lost dads, or have broken relationships with their dads, or have father-figures for themselves or their children that they are so blessed to have in their lives.  It isn't an easy day for many people.  I was wishing I had a way to make the day better for the people I care about for whom the day was painful.

With so many complicated feeling swirling around, I also thought about the most important dad in my life - my husband.  Being a dad is a big responsibility.  Being a special needs dad, and then a dad of a critically ill child (even an adult child) adds on special layers.  John has never, ever been afraid to jump right in and get his hands dirty as a dad.  I'm not sure he had ever even held an infant before the nurses placed Jessica in his arms, yet from that first moment he never looked back.  I think he would say being Jessica and Alex's dad is the best role of his life.

When we realized there was something "different" about Alex and began pursuing an autism diagnosis, John was there every step of the way.  The professionals were kind and complimentary to me, but were genuinely surprised at the level of John's involvement.  More than one professional made comments about how hard it must be for a dad to accept such a diagnosis in his only son.  Don't get me wrong, we grieved plenty for lost opportunity, but our son was still there, and we were devoted to him.  The implication that John would love him less somehow, or view Alex as "less than," did not sit well with Papa Bear, let me tell you.

Since Alex's cancer diagnosis, I've been asked many times if I was still working (I did keep working throughout the school year, at least when I could), but John doesn't get asked that question.  On a pragmatic level, if one of us had to take an extended period of time off, it would make financial sense for it to be me.  I earn less.  On a which parent is more capable level, John is every bit as capable as I am.

When Alex was first diagnosed with autism and was not yet in school, we took him to therapy together.  The majority of appointments throughout Alex's life have been done together.  When the kids were little and got sick, John never had a problem being the one to stay home with them.  He's held plenty a puke bucket in front of a sick kiddo and spent the entire day on the couch with a sick infant/toddler/child on his lap.

When Alex had surgery in January, we both stayed overnight with him at the hospital.  Neither one of us wanted to be the one to stay at home.  John was supposed to be in Arizona for three weeks in January.  He called the client and explained that he couldn't come.  The trip was deferred.  He was supposed to go in February, but then there was the cancer diagnosis, and staging the cancer, and beginning treatment.  The trip was deferred again, and ultimately didn't take place. The client was understanding.  John's boss and co-workers have been fantastic.  Both of our employers have been supportive and amazing.  Alex's group home has been amazing.  They have stepped up.  If not for them, we couldn't have worked as much as we did.

John and I have been at every chemo treatment, together.  We didn't even plan it that way at first.  I think initially we thought we'd take turns, or maybe I would take more time off.  It was too frightening at first.  We felt we both needed to be at every appointment.  Now it's to the point where neither one of us wants to miss anything.  We want Alex to know that we're there for him, no matter what.

So on Father's Day, I watched John sitting next to Alex on the couch, stroking Alex's head as he slept.  I saw him trying to protect his son, knowing that if there was a way for him to take this cancer himself to spare his son no power on earth would be able to stop him.  And I thought about how lucky I am.  Alex's prognosis is hopeful.  And somehow I was smart enough, or dumb enough, or lucky enough to fall in love at the age of 16 with a boy who would become the man I have shared every important milestone of my life with.  How lucky and I that this man loves me, and that we created a family together.  How lucky am I.

Saturday, June 13, 2015

Push Me, Pull You

I took a nap yesterday, and I dreamt that Alex and I were walking through town.  Along the way, we stopped at a lemonade stand.  The girl selling lemonade was about Alex's age.  I didn't know her, but they knew each other.  He looked at her, and spoke.  A complete sentence.  Clear as could be.  I could hear his voice in my dream.  It shocked me so much I immediately woke up, and as soon as I was awake I wished I was asleep again so I could hear what his voice sounded like.

There isn't a day that goes by that I don't wish I could hear Alex's voice.  I want to know what he's thinking.  What he's feeling.  I want to know if I'm guessing right.  I'd even be happy to know that I've been guessing wrong, if I could hear it from him.  "Mom, what were you thinking?"

I've learned to listen differently.  I've learned to watch and read signals.  Sometimes, when people interpret his sounds and actions as happy, we believe we know differently.  It may even begin as happy, but it slides into anxiety and overstimulation.  John, Jessica, and I have learned to read him.  There are others who can read him, too, but it takes practice and a real commitment to paying attention.

We've learned, I hope, to pay attention.  We've learned a lot in the past 25 years.  Parenting for anyone is a journey and there are mistakes and milestones.  Parenting more than one child requires a lot of juggling and balancing for all families and we all have our own unique sets of challenges.  In our case, parenting Alex and Jessica makes me think of the "Push Me, Pull You" from Dr. Doolittle.  Often what they each needed was in direct contrast to each other.  The challenge to give each one what they needed, when they needed it, was always a goal but sometimes it was harder to achieve than others.  Each one pushing, pulling against the other like the fictional creature.

It wasn't just that Alex needed a lot, or that Alex couldn't do the things that Jessica could.  Alex needed therapy and intensive intervention and, in those days, the outside help we received was minimal.  From his diagnosis until he started school at age 3, we got about an hour of therapy a week.  He started early childhood at age 3, which was half days, four days a week.  The rest was up to us.  Jessica started music lessons at age four, and performing in theatre at age seven.  Alex wasn't the kind of kid you could drag along to a music lesson or play practice.  You could take him in the car to drop her off, but even waiting for a pick up was often problematic.  John and I learned early to divide and conquer.  We were also able to rely on some family members to help with transportation, and we started hiring caregivers who would be able to watch one when we needed to be involved with the other.

And we learned what we could do as a family, and what we needed to do separately for each one.

Now that I'm older, with a "few more trips around the sun" as John likes to say, I would cut my younger self a lot more slack.  What's the big deal if the younger sibling doesn't want to go to the recital, I would say now.  But back then, it was difficult.  For many years, as I sat in the audience watching Jessica perform, I felt guilty about leaving Alex behind.  It hurt that he couldn't be there with us.  Maybe my angst was needless.  If he could have spoken, maybe he would have said, "Geez, mom, why would I want to go?"

We learned what we loved to do together - baking cookies, coloring Easter eggs, watching movies, going for rides, swimming, roller coasters and museums.  We travelled together.  We went through museums at Alex's pace.  We visited Disney and rode roller coasters.  We've been to Mount Rushmore, Washington DC and Boston.  We made memories as a family.

When we went to Disney when Alex was seven, he had finally learned to say "no."  He pronounced it "whoa" and would shake his own head back and forth, but he would also grab the face of the person he was talking to and she their head.  We'd inadvertently built that in as part of the response through years of trying to teach him how to say no by adults touching his chin and shaking his head back and forth.  He thought that was part of the response.  We drove to Disney, and any time Alex heard someone (whether he knew them or not) say the word "car" he would grab my face, or his dad's or his sister's, and emphatically say "whoa."  He did not want to go home!  We were thrilled with his communication, and he gave us a good chuckle.

We knew, and Jess learned at a young age, that traveling with Alex meant the trip had to work around his needs and what he was able to do.  Roller coasters - yes; lining up and waiting for parades - no.  Being together as a family was the most important thing.  Watching Alex enjoy new experiences was magical for all of us.  When he was overwhelmed or struggled, we all just wanted to make him feel better.

Within every trip, John and I would trade off with Jessica.  At some point, when Alex needed a break, one of us would stay back with him and the other would do something special with Jessica.  We would do something that she wanted to that Alex was unable to do.

Starting when Jess was about six, we began traveling alone with her.  At least one weekend a year, we would take her someplace that she wanted to go - a weekend in Milwaukee, or Chicago, or New York.  Most trips were pretty simple; some, a bit more involved.  We would visit museums more slowly, and go to shows and restaurants that Alex would not have enjoyed.

It wasn't easy to figure all this out, and we didn't always get it right.  Sometimes the compromises were easy, but sometimes they weren't.  We took Alex to visit Jess at MIT in Boston.  It was a great trip, and Alex did well.  But traveling takes a lot out of him.  In some ways, it's gotten harder as he's gotten older.  I think when he was younger he was more oblivious to the world around him.  He can't shut things out as easily now.  He was done with that trip before we were planning to leave.  We decided to leave a day early.  It was a difficult decision, and disappointing to all of us.

Without Alex having language, we don't have the ability to negotiate in these situations.  We can't ask him if he wants to leave, or if he wants to stay even though it's difficult for him.  We're always guessing.  We're always trying to decide if the "stretch" is worth it - what is he getting out of this, is it what he wants, is it good for him, or is it too much?  We don't want Alex's world to get to small, but we want to respect his needs and wishes.

Holidays and family events have always been tricky as well.  Alex was always easily overwhelmed by the excitement, energy, and change in routine.  Jess loved it all.  Lots of cousins?  Great!  Tons of people?  Fantastic.  We had to figure out a system for these as well.  John and I always had a plan - who would stay with Jess, and who would take Alex home early.  We often went places in two cars, so one of us could leave with Alex if we had to.  Every event had a back up plan.  If it was an event that we felt we both needed to stay for, then we had someone else on "stand by" for Alex.

When the wedding planning started, we knew we had to have a back-up plan.  We all wanted Alex to be a part of it, but knew that he had to have an "escape" whenever he needed.  So we made a plan with one of Alex's caregivers from his group home.  We had a plan we felt good about.  Then he got sick.  We didn't know how that would impact his ability to participate in and enjoy (tolerate?) the day.  Then we realized that the wedding fell on a chemo week.  We knew that there was a real possibility that Alex wouldn't feel well enough to attend.  We made a plan, and prepared ourselves for whatever he would be able to do.  Jess and Rusty came home from California for the wedding on Wednesday.  We all went to chemo with Alex on Thursday.  Alex should have spent the next two days in bed.  Instead, he went to a wedding pig roast.  He was anxious, but he stayed for over an hour.  (That may not sound like much to the casual observer but, trust me, that was a big deal; even for a healthy Alex much less one who had just had chemo 24 hours before).

The day of the wedding, he showed up looking handsome and healthy, and with a big smile on his face.  He walked me down the aisle.  He beamed at his sister when she took her place by Rusty's side.  (And he apparently stuck out his tongue at Rusty.)  Just like the rest of us, he didn't stop smiling all afternoon.  As he took his last bite of his dinner, it all caught up with him.  The color left his face, and he suddenly looked like he would fall asleep sitting up.  His caregivers quickly finished eating, and took him home.  Alex had exceeded all of our expectations and, by all indications, looked like he had a great time.  We couldn't have asked for more even if he hadn't been sick.  He always seems to know when it's time to step up, and he certainly did that day.

So now when I think of that fictional Push Me Pull You, I don't see that creature that is tugging at each other, unable to move.  I see that creature learning what the other half needs, and learning how to move together. Each one learns to give when the other needs it.  At the end of the day, I guess that's the lesson that every family needs to learn.

Monday, June 8, 2015

Circle of Life...

Cue the Lion King music.  Or my other thought for a title was Dicken's "It was the best of times, it was the worst of times...."

I'd like something more clever, but I'm far too exhausted after the last five days.  We've experienced glorious highs, devastating lows, and everything in between.  Jess and Rusty got married.  Alex had chemo.  A friend died tragically.

First, the wedding.  It was glorious - absolutely perfect.  When the daughter you adore is about the marry the man you think is perfect for her in every way, how can it be anything but perfect?  The venue was the EAA Museum in Oshkosh, WI.  That location was chosen before the groom was even on the radar.  Jessica was never the little girl making tons of future wedding plans except for one thing - sometime long ago, I don't even remember when, it was decided that her "someday" wedding would be at the museum.  She's been visiting this museum since her daddy pushed her in a stroller, an she hasn't missed attending AirVenture since she was seven.  This little girl who grew up to be a pilot and an aeronautical engineer.  Where else could she get married?  So when Rusty proposed and wedding planning began in earnest, we never considered another venue.  Rusty is not a pilot, but he is a history buff, a museum buff, and adores his Jessica, so he was on board right away.

Wedding Photo by Jenna Kutcher:

Like every wedding, the last months have been filled with many details.  We planned an entire "wedding weekend" to celebrate since many guests were traveling long distances. A Welcome BBQ was planned - a Wisconsin spanferkel.  John's band agreed to play at the BBQ, and they practiced a few songs with Jess so she could sing at the party.  The theme of WWII Aviation was carried out in every detail - from the gift card box, to table decor, to the clothing and everything in between.  Jess spent hours and hours making sure everything was just right.  Each guest table also had a QR code with a link to the history of their airplane or code-breaking location.  They married on Rusty's grandparents' 62nd wedding anniversary (also the anniversary of D-Day),  our musical group, Relativity, sang the same processional and recessional that was sung for our wedding, she wore her mother-in-law's veil, the groomsman wore special cuff links (Dr. Who for dad, Harry Potter for Alex, super heros for Rusty and the groomsmen), and on and on.

It was magical.

A particular highlight was Alex's involvement in the day.  We always knew Alex participating in his sister's wedding would be a challenge.  Crowds and big events are challenging for him, even under the best of circumstances.  But now he's sick.  We had already planned to have someone from his group home bring him to the events.  Then we realized that wedding week was also chemo week.  We considered altering his chemo schedule, but two doctors (without knowing anything about the wedding) advised us to not interfere with the chemo schedule, no matter what.  It is not hyperbole to say his life is on the line.  So we had chemo on Thursday, and Alex attended the BBQ Friday and the wedding Saturday.  Typically, he would have spent those two days after chemo in bed.  He did well at the BBQ, but he was pretty anxious.  He stayed about an hour, and wasn't interested in eating and didn't do a lot of mingling.  But he came, and he hugged his sister and seemed pretty happy.

Saturday he came and we did family pictures before the ceremony.  We wanted to make sure we got some photos in case he couldn't stay.  He ended up staying until after dinner.  He smiled, enjoyed himself, and was relaxed.  He ate three plates of spaghetti at dinner.  (We had a buffet of multiple stations.  The pasta station was selected with Alex in mind.)  As he finished that last bite, he looked like he hit a wall.  His color faded, and he looked exhausted.  It was time to go.  We were hoping he would stay for an hour, maybe two.  He lasted four hours, and made it through the important events.

The day before the BBQ was chemo day.  Jess and Rusty came along to chemo.  Jessica held her brother's hand and spoke soothingly to him while it took an hour and seven tries to get his IV started.  (Once they got it going, the rest of the day went pretty smoothly.  It usually only takes one or two picks; Alex's veins would just not cooperate this week.) We hung out as a family for the day in the tiny exam room we use for each chemo.  Jess and I filled out the escort cards for the table assignments.  Rusty got more bonding time with this crazy family he's married in to.  Part of me feels sad that it was a chemo week, but part of me is actually grateful because it has been so difficult for Jessica to be far away during this time.  It felt good to be together at a time we needed each other.

In addition to all of these things going on, we lost a friend on Tuesday.  I got a text alert to my phone that a small plane has crashed at Oshkosh.  My heart stopped.  We have so many friends that fly at that airport.  Moments later, the next alert said it might be a Sonex.  John and I were on our way to do some wedding preparations.  We both felt sick.  The names of all our friends that it could be started going through our minds.  I sent a couple of texts; I got responses, but didn't know yet any details.  The aviation world is a close knit one, and the connections keeping loop around in amazing ways.  Sonex is based in Oshkosh, yet Jessica works with one of the designers of the aircraft out in California.  So, while we were waiting for word here, the call came from Jessica with the news we were dreading.  She called to tell us Jeremy had died in the crash.  It wasn't until the next morning that we learned the name of the second fatality.  The passenger, Mike, was someone we knew from our flying club.

Jeremy Monnett was the type of charismatic man who had friends far and wide.  Jeremy and his wife Kate were planning to attend Jessica's wedding.  We found out after the accident that Jeremy had planned to do a surprise fly-over of Jessica's BBQ, flying his Sonex with his four year old son, Miles, as a special tribute to the bride and groom.  He was going to give a tour of Sonex to all of Jessica's Lockheed friends who were in town for the wedding.  Jess and Rusty were getting married in the very same space where Kate and Jeremy had been married.  In the midst of all of our joy, our hearts were breaking for Kate, for Miles and Brooks, and for Jeremy's parents.

Kate showed up at the BBQ to give Rusty and Jess her congratulations.  "Jeremy would want me to."  She told them about the planned surprise.  She told them to cherish each other, and to love each other.  We hugged, and cried, and said I love you.  She didn't stay long.  She spoke to Jess and Rusty and John and me, and to a few other people she needed to see and speak to, and then she was gone.  The fact that she came, during the darkest days of her life, means so much.

Sunday was the celebration of Jeremy's life.  It was held at the EAA Museum, in the same space where Jeremy and Kate had been married, and the same space that Jess and Rusty had celebrated their wedding the day before.  We were back, to pay our respects and to show our love and support to the Monnett family.  I heard that they estimate 2,000 people attended.  Kate also told Jess and Rusty that getting married in that amazing space is something that they will always share with her and Jeremy.

Jeremy is gone far too soon.  He leaves behind an amazing wife, two sons, and a fantastic family.  Kate's message is one we take to heart - cherish every moment.  I remember when we saw Jeremy a day or two after Alex's cancer diagnosis.  He hugged us and told us he and Kate were thinking of us and pulling for us.  We talked about how your whole life can change, unexpectedly, in the blink of an eye.

Life is too short to waste a moment.