Sunday, December 27, 2015

Chameleon

Lately I have been feeling like I don't recognize my life.

I'm having a hard time knowing what day it is; what season it is.  The unseasonably warm Wisconsin winter isn't helping. Christmas has taken a back seat to cancer, so the holiday spirit has been difficult to capture.

My current life does not contain any of the elements that normally give it shape.  I should be getting up each weekday and going to school.  I should be writing lesson plans, teaching children, grading math tests and writing projects. John and I had developed a routine of flying every Saturday morning, then going for bagels after.  (If my landings were good, I got "crunchy munchies" on my bagel.)  John went to work.  He sometimes traveled for work.  We visited Alex about 3 times every two weeks and he came for an overnight visit about once a month.  These things and many more made the routine of our lives.

I don't teach right now, and I don't know what day of the week it is.  I've spent more nights sleeping in hospital beds than in the entirety of my 52 years up to this point, including the nights after giving birth.

My life doesn't feel "right" to me.  And I feel like I'm in limbo, because it also doesn't feel right to keep talking about when my life "returns to normal."  I did that for the first six months of Alex's treatment, but at the end of that, it turns out we weren't done.

I'm afraid to look too far ahead.  The truth is, Alex's prognosis is very scary.  What we're banking on, and hoping for, is that this transplant cures his cancer.  That is possible, but in no way guaranteed. I'm not even sure I can it's likely. The next best thing would be remission, but we don't know how long that could be.  At this moment, the treatment plan includes more chemo after the transplant, probably for another year.

So we can't keep waiting for life to return to "normal."  Normal has changed.  Life has changed.

I don't recognize my life, but the answer isn't trying to get back to the life I had before, but figuring out what this new life means.

Life changes you.  The good, the bad, the in between.

How can you go through cancer and not be changed?

Hiding from, or ignoring, what you're going through is a mistake.  Cancer has changed me in ways I don't like - I have a level of anxiety I'm not used to; I feel physical pain and fatigue from the stress and the fear.  Friends and family comment on our strength.  It is nice to have that support, and I hope we are strong.  We are trying to be.  But make no mistake -it's hard.  We are sad.  We are scared.  We cry, have short tempers.  And seeing your child sick and going through horrific treatment is awful. There aren't words to describe the feeling of fear that your child may die.

But I would miss an opportunity if I ignored the lessons cancer brings.  Empathy.  Many, many people are battling cancer or have family members who are.  We struggle with the uncertainty of Alex's survival, but at least we still have hope.  Others are not so lucky; they know their outcome with not be positive, or they have already lost the fight.

And it doesn't have to be cancer.  Most people have something in their lives that challenges them.  "Everyone is fighting a battle you know nothing about..." states a popular internet meme.

I hope that when I hear about someone else who is sick, or out of a job, or facing the end of a marriage, or whatever it might be, that I listen with empathy and support; I hope I am not so engrossed in my own pain that I forget that I am not alone.  I realize that right now I don't have the emotional reserve or even the time to support others in the way that I would like, but someday things will get easier for me.  I need to use what I've learned to support those around me.

I've learned who I can count on.  Some friends have disappointed me.  Most have amazed and fortified me.  And I know now who can be there when I need them most.

I know I can count on myself.  I don't want to be sitting in a hospital right now.  I wish I could go to work and do other things.  But I can't.  Alex needs me.  This isn't easy, and it isn't for the faint of heart, but I sure hope all of you can do what you need to do when your time comes.

The truth is, I realize I can't go back to my old life.  That life is gone.  And I don't really want to.  I can't pretend that the pain wasn't there, or that this trauma hasn't happened.

I want Alex to get well; I want that more than anything.  But I want to take this experience with me.  I want it to make me a better person.  I want it to make me appreciate my life more.  I want it to make me appreciate my relationships more.

I look at Alex, and I am confident that he knows that his dad and I are there for him, no matter what.  He may have to be scared of cancer, but he doesn't have to be scared of being alone.  He can count on his sister.  He can count on his new brother-in-law.

I do look forward to my life "getting back to normal" in the sense that I go back to school, John is back at work, Alex is at his group home.  For awhile, this new normal will most likely include more cancer treatment.  It will include follow ups and monitoring.  We'll figure out how to do all of that, and have a life.

But right now, this is my life.  This is normal.  I'm spending my days with my son.  I'll try hard to be in the moment.  And when this moment ends and the next one comes, I'll remember this moment and use what I've learned.

Thursday, December 17, 2015

Christmas

I love Christmas.

I love decorating, baking, gift giving, and a roaring fire in the fireplace.

I love Christmas music - listening to it, singing it, performing it for others.

But mostly, I love spending it with family and friends.  This year, our Christmas will look very different.  We will focus on what's most important as we spend our Christmas in the hospital with Alex during his stem cell transplant.

Christmas Eve will be "day -4" and Christmas Day will be "day -3."

As I said, I love, love, love Christmas.  That doesn't mean that I'm immune to the complicated emotions, stress, and tricky family dynamics that also accompany the holiday.

Christmas for Alex has always had its own issues.  Creating Christmas for someone on the autism spectrum and also meeting the needs of his sibling and the rest of the extended family required quite a tap dance.

When my children were very small, Christmas Eve was spent with my in-laws, and Christmas Day with my family.  Jessica loved the chaos, noise, food, and cousins.  Alex was easily over-stimulated.  He could do everything, but in small doses.  We learned early on that we would have to do what was best for him, regardless of whether or not others understood.  And, for the most part, everyone did.  We probably put more pressure on ourselves than anyone else did.  The "rule" we established early on is that whoever's side of the family we were celebrating with, that parent would stay at the party with Jess, and the other parent would bring Alex home.



We rarely went anywhere in one vehicle, and we always had an "escape plan."


It may have been easier to opt out completely, but our goal was to stretch Alex's world without totally overwhelming him.  Since he was, and still is, basically nonverbal, we'll never know from him whether or not we got it right.  We went with our gut.  It didn't feel right to exclude him, and it didn't feel right to ignore the signs that he gave when it was too much.

We have, at least I hope we have, become adept at "reading Alex."

Opening Christmas gifts was another issue.  He just wasn't interested.  We had to figure out how to make the gift opening something he could enjoy and participate in.  I managed to find Sesame Street Christmas wrapping paper (Alex was obsessed - as literally OCD obsessed, it turns out, with Bert and Ernie).  That helped.  We let him open presents in his own time.  Some years, that meant his presents were under the tree for days before he had opened them all.  (Jess told me a few years ago that was torture for her.)

Over time, Alex learned to partake in all things Christmas.





He is my Christmas baking sous chef (or maybe
now I am his?).





He loves opening presents.  He loves music and Christmas movies - or at least he loves his mom and tolerates some of the hoopla for me.


Because of Alex, we also learned to carve out Christmas traditions for us.  Ones that were special and not overwhelming.  Christmas Eve drives in pajamas to look at the lights, not getting out of pajamas at all on Christmas Day - just presents and toys and naps and food and movies.

Music has been a part of our Christmas for many, many years.  When the kids were young, we took them all with us when we caroled at area senior facilities.  One very fond memory is visiting a place called Roundhouse Manor in our home town many years ago.  Alex was about four.  We were all in the gathering space, singing our hearts out surrounded be appreciative residents.  In between a couple of songs, Alex wondered over the the jigsaw puzzle table and with one very fast sweeping motion, brushed all the pieces to the floor.  The collective gasp from the residents just about removed all the air from the room.  Now that Alex is a cancer patient, we see jigsaw puzzles in every waiting room.  Every time I see one, I smile at the memory; although at the time I was mortified.

We managed to sing for Midnight Mass for many years, always coming up with someone to come over and stay with our kids, or Alex when Jess got old enough to want to go along, so we could sing.  Establishing a good sleep routine for Alex was years in the making, and could be easily ruined.  Taking him to a place that would be overwhelming and stressful in the middle of the night when he thought he should be sleeping was just not an option.  Yet, somehow, we found a way to make the whole thing work.

I will confess that I have shed tears in the past, wishing that Christmas for Alex could be less complicated.  As I sit here now, I realize that it helped us to learn what was important, and to make Christmas what it needed to be for both Alex and Jessica.

This year, there are no decorations or cards.  We're packing for the hospital.  When the transplant got pushed back a week, I had a fleeting thought that I would have time to get the tree up.  But then I thought about taking it down before we go, or having it waiting for us when we return at the end of January or in February.  So I let that idea go.

But there will be Christmas.  Traditions have changed over the years as our extended families have grown and changed.  We've always managed to adapt.  My dad passed away on December 23, 1994; of cancer - no irony there.  Our family celebrated with him a week before his passing.  This is our first Christmas without John's mom; although, truth be told, Alzheimer's stole the last couple of Christmases even though she was still alive.  She loved Christmas and was the heart of the Forster family Christmas.

It will be Christmas in the hospital; and, hopefully, like Cindy Lou Who when she woke up Christmas morning without any presents, it will be Christmas because we're together.

John, Alex, and I.

Jessica and Rusty will come for Christmas Eve.  Their first married Christmas.  The bright spot of the year for our family - Jessica and Rusty's wedding, and their unexpected move back to Wisconsin.

And Allison's family will be there.

When we check in to the hospital, chemo starts that first day.  We begin our countdown to transplant day, that's why Christmas Eve is called "day -4" and Christmas Day is "day -3."  Day 0 is the day his stem cells are infused back into his body.  That will be Alex's new "birthday."

Last Christmas is when I realized that something didn't look right with Alex's neck.  I had nothing to go on but a feeling that something wasn't right.  I look at last year's pictures now, and it seems so obvious.  Little did I know that it was the beginning of a very tumultuous year.


In August, I was sure that Alex had won - that he had conquered his cancer.  Sadly, that was not the case.  Cancer is not an easy foe to beat, and Alex's cancer is certainly not backing down without one heckuva fight.

This Christmas we focus on love and family, and on Alex's treatment and the hope that it will give him many more Christmases in the future.  That's all I really want for Christmas.





Tuesday, November 17, 2015

Choose to be Strong, Even When You're Not

Resiliency.  Growth Mindset. Grit.  Attribution Theory.

There are a lot of names or buzz words that represent similar ideas.  At school this year, we're all talking a lot about the idea of "Growth Mindset."  Fifteen years ago, we were talking about "Attribution Theory."

The idea is is that individuals who are successful believe that they can learn and change and grow.  They believe that with practice they can be successful.

I think this idea applies to our current situation.  Alex's cancer is certainly testing us in ways we've never been tested before.  We do our best to remain positive and face each challenge head on.  That doesn't mean it's easy.  Prior to this, our medical knowledge was minimal.  It's also safe to say that neither John nor I went into medical fields for good reason.  This is not where our interests or aptitude lie.  But here we are.  We've learned a lot in the past ten months, and our accelerated cancer course is not finished yet.

We appreciate the support of friends and family.  Honestly, though, we're a bit puzzled by the continuous compliments.  It's not false modesty.  We don't see any other option.  When Alex's new PICC was installed last week, the medical team in the cath lab was incredibly complementary about what great parents we are.  That was nice (I half expected them to give us a sticker or a lollipop or something), but puzzling.  Afterward, I whispered to John, "the bar must not be very high."

The thing is, when a doctor looks at you and says, "you need to do X,Y,Z or your child will die," you suck it up and do X, Y, Z.

Alex needs us to be strong.  We have to be his voice and advocate for him.  We have to ask the questions he cannot ask.  We have to hold his hand when he's scared.  We have to do whatever he needs, and we have to make our best guess as to what that is since he can't tell us.

That doesn't mean it's easy.  That doesn't mean we're not scared beyond words.

Right now, I have the luxury of not working and focusing on Alex's treatment.  John is still balancing work as well as Alex's cancer.  If he could, he'd be there for Alex full time as well.  But the bills still need to be paid and we need at least one income.  If I were the higher wage earner of the two of us, he'd be home full time instead of me.

We don't like watching Alex have a PICC line installed, or getting put under for a PET scan, or holding his hands so he doesn't pull the drain out of his neck after surgery.  We don't like sleeping on a hard chair in a hospital room with a stranger watching over us.  But Alex needs us.

We don't always get it right.  Most mornings are hard to get out of bed.  I fall asleep by 8:00 most nights that we're home.  I feel tired in my bones a lot of the time.

Last week when Alex was in the hospital I could hold it all together.

This week, there's a short break.  Alex is at his group home.  He's doing okay.  We're getting ready for tests next week.  Yesterday afternoon, I had a meltdown.  I certainly didn't plan it.  I felt helpless to stop it.  Jessica held me and told me it was okay to cry.  I couldn't let myself do it.  I was afraid if I really let myself cry, I wouldn't stop.  John was worried about me, so he came home early from work.  I ended up just going to bed in the middle of the afternoon.  Today was better, but I didn't accomplish anything.

But that's the end of my window to fall apart.  Tomorrow Alex has a blood draw.  I have things to do to get ready to go to Milwaukee.  In a few days we go to the hospital for tests.  A few days after that we start the process for harvesting his bone marrow.  I know that we have to be even stronger than we've been so far.

We appreciate the compliments, but we really don't see any other way.  Turns out, my magic wand to cure his cancer is on the fritz.  This is all we've got.  Put one foot in front of the other, day by day, minute by minute.  This just sucks.  But I can't focus on that.  Instead, I choose to focus on the positive.  I see Alex's smile.  I know that John is my rock, and I know that I have to be that for him.  Jess is here.  Rusty is here.

Time to take a deep breath.  We got this.  That doesn't mean it's easy, but it is what we have to do.


Friday, October 23, 2015

Midnight Musings from the Cancer Ward

These are the things I think about when I'm trying to fall asleep in Alex's hospital room:

1.  Alex (and our family) has built so much capacity in the past few months.

Alex now knows how to get to the bathroom while hooked up to an IV.  He can eat meals sitting in a hospital bed.  He tolerates being poked and prodded throughout the day (and sometimes the night).  I'm learning to sleep in a room where a stranger is watching over him all night (to make sure he doesn't rip out any lines).

2. It doesn't matter how old your child is; when they cry, you cry (even if it's only on the inside because you can't let them see you cry).

Alex's autism includes a major anxiety disorder.  Panic attacks can manifest themselves in various ways.  For Alex, one type of anxiety attack is a sudden onset of weeping.  It is the saddest thing you ever want to see.  The chin quivers.  The eyes well up.  Big, wet tears slide down his cheeks.  He hates crying, so he wipes and cries even more.  He had two such episodes last night while he was waiting through a delay in his chemo meds.  They gave him some medication to help him through it, and he finally fell asleep.  I just wanted to burst into tears myself, but I had to hold it together.  On the inside, I was a mess.

3.  Hospital time is a dimension all its own.

Day three of this hospital stay, and we're still trying to get his home medication schedule worked out.  His times don't match hospital "default" times, so he has yet to get his normal daily medication on time.  I have all his "home meds" in the room with me, bubble packed and verified by the hospital pharmacist, but I can't give him those.  I have given his medication schedule to the pharmacy tech and every nurse, but it still doesn't match in the system.

Also, every chemo med has been delivered late from the hospital pharmacy.  Consequently, instead of being released Friday afternoon, we won't get out until Saturday morning.  This hospital stay and chemo has been scheduled for three weeks.

4.  Cancer sucks, but cancer treatment is fascinating and filled with amazing people.

My family's medical knowledge coming into this phase of our lives was quite limited.  None of us chose medical fields for very good reason; this is not our area of strength.  That being said, we have learned, and are learning so much.  It is all fascinating.  I feel like an expert at autism, but Alex has always been physically healthy.  Now we have to learn his illness, his treatment, and how to make it work with his autism.  Occasionally we meet a professional who is slow to catch on to what we need, but that has been few and far between.  Our medical care has been fantastic.

5. Can really does affect the whole family.

Forgive us when we say "we" for everything.  Jessica texted me something the other day and it said "in case we aren't released from the hospital yet."  It isn't really conscious.  And I know full well what Alex is enduring if far more difficult than we can imagine.  But it is "we."  Our family has cancer.  Our life revolves around when "we" have treatments.

6.  Every single day I wish I could trade places with him. 

I so wish I could trade places with him.  I'm sitting at his bedside, grateful that he's asleep.  It isn't fair that he has to endure this on top of all the challenges he has already faced in his life.  And yes, I know all too well that life isn't fair.  But this just stinks.  I also know that in order to trade places with Alex, I'd have to get past his father, his sister, and his aunt who all feel the same way.


Thursday, October 1, 2015

In the Quiet of the Morning...

I hate waking up, but I love morning.  My husband's eyes pop open at 3:30 am and he's ready for the day.  My alarm goes off at 5 am and I grumble, but once I'm up, I'm ready to go.  On the weekends, I'd like to "sleep in" until 6 am, but John and the dog always have other plans.  I complain loudly, but when we take off for an early Saturday morning flight as the sun rises, I know that he's been right all along.

I arrive at school every day by 6:30 am; 6:15 if I can manage it.  There are a handful of us there early every morning.  It's quiet, there's no line at the copy machine, and I have almost an hour before the halls are really busy.  I can get a lot done.  I love that peaceful time to really get my thoughts into the day ahead.  When those 21 faces greet me at 7:45, I'm ready to go.

Now, it's early morning in the hospital.  I'm learning new early morning routines.  Alex has been awakened several times to have his blood drawn, get weighed, take meds, go to the bathroom.  He fell back asleep surprisingly fast each time.

I quietly washed up and dressed in the dim light while he slept.  I asked the nurses to watch him while I went to the cafeteria for a quick breakfast (15 minutes, including the elevator ride, there and back; I've learned how to inhale food from years of parenting Alex) while he slept, nervous the whole time because these new people don't yet understand what it means to watch someone like Alex.

He lulls you into a false sense of security and when you let your guard down, things happen.  Two weeks ago, after his surgery to remove a cancerous lymph node, he deftly removed the drain from the side of his neck.  Then he immediately had to go to the bathroom.  My husband and I were scrambling for the nurse call button, trying to unplug the IV pump, and get him to the bathroom "in time."  Last night, he removed the needle that was supposed to be left inserted into his brand new chemo port in between treatments.  It was bandaged up, but it still bugged him.  Despite having me at his bedside, and being on video monitoring, he managed to pull the bandage off without removing his shirt.  I pressed the call button, but the deed was way-done by the time she arrived.  This morning, he removed the DermaBond that was over his incision for installing the port.  I thought he was asleep and was sitting right next to him.  He surreptitiously peeled it off, under his shirt, without me even knowing.  *Sigh.*

We've learned a lot in the past nine months, but there's more to learn.  There will be many more quiet mornings in the hospital.  Three rounds of inpatient chemotherapy, followed by a stem cell transplant.  It will be an opportunity for both learning and teaching, I think.  I have more to learn about Alex's illness and treatment.  And I have more to teach to help the nursing staff take care of Alex.  I tell them he needs to be watched closely, and they say they understand, but then they walk away.  When I call them back they say, "Boy, is he fast."

Autism and Cancer make things much more interesting.  Being a nonverbal adult in a hospital setting has challenges as well.  Being a nonverbal adult who is physically independent, and strong, and determined, and who understands what you say to and about him, is something most of the professionals don't seem quite ready for.  If Alex wanted to, he could just get up, get in the elevator, and leave.

Caring for Alex requires "constant vigilance!" as Alastor Moody from Harry Potter would say.  The next few months will be an interesting ride.


Friday, September 25, 2015

Now What?

In case any of the people in my life are wondering: yes, I know I'm a control freak.  I strive to be organized, in charge, and on top of things.  I like to be right.  I'm not good at admitting weakness, or comfortable with being wrong (even when I'm able to admit it, it's painful for me).  Cancer flies in the face of every aspect of how I try to live my life.

My dad died of cancer, so it's not like my life has been untouched by this awful disease.  He was 68 years old when he was diagnosed with advanced, terminal, esophageal cancer.  They did surgery to remove as much as they could, but the surgeon told us when he came out of the operating room that dad would not survive this disease.  He passed away less than a year later.  It was a heart wrenching year for my whole family.  Dad had lived with Parkinson's Disease for a dozen years, and he actually expressed relief at the cancer diagnosis saying he would rather die of cancer than spend 20 more years with Parkinson's.  I saw my dad nearly every single day of his last year, and I was at his bedside with my mom and my husband when my dad passed away.  I did not see him the day before he died.  He called me to tell me not to come over; to stay home and rest, because Jessica and Alex (age 4 and 6) both had pneumonia and I had been trying to take care of them, work, and see my father daily.  He told me he loved me.  That was the last conversation we ever had.  He was not conscious when we were called to his bedside the following morning.

My childhood was mostly good.  I was raised by loving, imperfect parents and the youngest of five siblings.  They were enough older than me, that by the time I was a freshman in high school I became more of an only child.  I'll spare you the trials and tribulations of our big, messy, headstrong family.  We had our ups and downs, as families do.  What I will say is that I felt that my life was not within my control for a lot of my childhood and adolescence.  I also felt that I it was my job to be a "good girl," to take care of people, and to make things better.

One of my primary goals as an adult has always been to be in control, to be proactive, and to make things better.  I'm finally, at age 52, catching on that I've been deluding myself for decades.  Life is just messy, and tumultuous, and difficult, and beautiful.

I used to think that Alex's autism was the most painful thing I had experienced in my life.  I'm ashamed to say that now.  His autism has brought him tremendous challenge and, at time, pain; and that has been true for our family.  But I could not love him any more, nor could I be more proud of him, if he didn't have autism.  Autism doesn't define him, or our family, but it is an integral part of him.  Just like his smile, his sense of humour, and his blue eyes.  Alex's autism, and certainly his life, is not a tragedy.  Now that I'm faced with the very real possibility of losing him, I want desperately to hang on to every messy piece.

Today we go to see a cancer specialist to find out what's next.  The cancer isn't gone.  More treatment is undoubtedly needed.  Writing this without knowing what's next is, in itself, a risk for me.  Will I be embarrassed that I shared my feelings if the news is better than I expect?  Who am I kidding, the news can't possibly be good!  All of that is rolling around in my head.  So, I'm taking a risk.  I am, literally, throwing up my feelings on the page this morning.  And then I'll dry my eyes, take a deep breath, and think, "show time."  I'll put on a brave face, go pick up my son, and John and I will drive to the hospital, meet with the doctor, and then we'll do what needs to be done.

I may have to accept that I am not in control of this situation.  That doesn't mean I'm giving up the fight.  As John said to me this morning, "We'll do what needs to be done.  We always do."

Wednesday, September 9, 2015

One Step Forward, Two Steps Back...

When Alex was in his first years of elementary school, it seemed that every accomplishment or period of growth was followed by a time of challenge.  We started saying, "one step forward, two steps back."  He'd make some progress with communication, or interaction, or self-regulation, but then it was as if it cost him so much to make those gains, he had to just fall apart for awhile.  At times, it felt like he was regressing, but then - eventually - he'd re-emerge with that new skill intact after all, and layer on something new.  It was certainly an exercise in patience for all of us.

Alex's cancer journey has been remarkable for all of us.  Like everyone's cancer journey, I suppose, more has been asked of our family than we ever thought possible.  Alex has shown tremendous resilience, strength, and trust.

Despite a punishing chemo regimen, his side effects have been relatively minimal.  Fatigue has been significant, but he is good at taking the time he needs, and his caregivers at his home, and our family, all make sure Alex has the opportunity to rest when he needs it.  (Ironically, the one time he resists rest is during chemo.  He cannot let himself give in to sleep.  He fights sleep every step of the way.)

His appetite and weight have held steady.  His attitude has been positive.  We've felt "lucky."

In the last month or so, the anxiety has increased.  You may wonder how we know he's more anxious, since he doesn't have the words to tell us.  All I can say is that if you know Alex, you just know.  There is a furrowed brow more often.  He rocks to try and sooth himself.  Although nonverbal, Alex is never silent.  If you have lived with Alex, or gone to school with Alex, you know when he is nearby.  He has a very distinctive way of vocalizing, and his moods are evident by the sounds he makes. When he's feeling good, it doesn't take a lot of rocking or sound to make things right.  These days, there are a lot more of both.

It seems likely that some of the anxiety is biochemical in nature, as Alex's body continues to process the toxic chemicals that have been pumped into his system over the past six months.    It also seems likely that he experiences sensory and cognitive side effects that may be unsettling to him; many cancer patients report changes in taste, sensation, and something called "chemo brain."  And there's no way for us to know what part is emotional.  Is he scared that he will die?  I don't know.  We talk through everything with him, imagining the parts of the conversation he might play, or the questions he might have.

August was a respite.  No appointments, no treatments, no chemo.  A chance to live life.

He had a PET scan at the end of August.  Our third trip to the same hospital.  There aren't a lot of "Alex's" coming through their doors for sedated PET scans for cancer.  The staff all remembered and recognized us.  We were excited and hopeful.  This scan would prove that the chemo had worked.  We were ready for our victory dance.

Last week we saw Alex's oncologist for the results of his PET.  The doctor was running late, so we were in the waiting room for over an hour.  He was in with a new consultation.  Any time his oncologist is late, I tell myself to be grateful that we aren't the most needy patient on the list.

I could tell from his body language when he came in the door that the result was not what we wanted to hear.  He called it a "mixed result."  All of the cancer from the previous PET was smaller and inactive, but there was a new spot.  He wasn't sure what it meant.  The radiologist hadn't used the scale he wanted, the one they use specifically for Hodgkins, so he was frustrated.  It would have to be re-read.  But the spot was concerning.  He wanted us to go back down to the specialist at the teaching hospital.  "Try not to worry.  He looks good."

We left, feeling deflated, trying to stay positive.

Our doctor called the lymphoma specialist.  The specialist said we need to biopsy the spot right away.  So they call the surgeon who did Alex's surgery last winter; the one where we found the cancer in the first place.  But this was a Friday afternoon.  Before a holiday weekend.  So nothing got scheduled. Tuesday rolls around.  Nothing. Today - Wednesday we get a call.  They want to schedule surgery for next Thursday. A whole week away.

More waiting.  But the surgeon needs to see the PET.  There are over 40 lymph nodes in the part of the neck where he needs to operate.  He can't go in blindly.

Now what?  One step forward - all of the old cancer responded; and two steps back - a new spot.  New cancer?  What next?

I'm just trying to breath, in and out, in and out.

Wednesday, August 19, 2015

Now What....



prag·mat·ic
praɡˈmadik/
adjective
  1. dealing with things sensibly and realistically in a way that is based on practical rather than theoretical considerations.
    "a pragmatic approach to politics"
    synonyms:practical, matter-of-fact, sensibledown-to-earth, commonsensical,businesslike, having both/one's feet on the ground, hardheadedno-nonsense
    informalhard-nosed
    "she remains pragmatic in the most emotional circumstances"

Definition from Google.


Everyone seems to have a joke or a story for the "glass half full" vs "glass half empty" views of optimists vs. pessimists.

I really don't fit into either camp.  I prefer to think of myself as a pragmatist.

Being pragmatic is how I've gotten through Alex's cancer.  For me, being pragmatic means that in order to deal with something as terrifying and life altering as cancer, I need to focus on the bits (however few they may be) that are within my control.  

Doctor's appointments, making sure Alex was eating, keeping everything clean and germ free, writing lesson plans for my sub, all of those things provided the illusion at least that I was doing something.  

Now that chemo is done, I feel a bit adrift.  I'm thrilled, don't get me wrong, but I'm back to feeling helpless.  I'm trying to stay positive, but I'm not quite ready to say that Alex has "kicked cancer."  Maybe I'm afraid I'll jinx something somehow.  We're back to a waiting game.  Waiting for the PET scan.  Then waiting for results.  And then just waiting for time to pass and prove to us that Alex's cancer won't come back.

Except I know I can't live my life waiting.  I just have to live my life.  And Alex has to live his.  Knowing that cancer could come back, but also knowing that statistics for Hodgkins are extremely encouraging.  And looking at Alex and knowing that he is so much stronger than he was in February.  His energy is slowly returning.  He was so sick by the time his cancer was diagnosed.  I felt like every day and alarm was going off in my head.  I knew that he was getting sicker by the day.  But now I can almost see him gaining strength by the day.

Too often, I talk about when "life will settle down."  John reminds me that life never really settles down, and if I keep waiting for that day, I'll miss my life.  He's pragmatic, too.  Life just is.  It's messy.  Sometimes it's harder than others.

And I know he's right.  It's not like life was on hold during Alex's illness.  Many things took a back seat, that's for sure, but there were still so many things to juggle.

We continued to work full time throughout his illness.  Thankfully, we had amazingly supportive employers, business partners for John, and coworkers who helped pick up the slack when we needed it.  We learned to say yes when help was offered.

We said good-bye to John's mom as her four year battle with Alzheimer's came to an end in April.  Time was spent at her bedside in those last weeks of her life.

My own mom has not been well.

Jess got married, which was a joyous celebration for our family, but hectic in its own way.

And I know that in the days, weeks, and years ahead, life will continue to be messy.  Sometimes filled with joy, sometimes heartache, and everything in between.

I'll just keep reminding myself to stop wishing and waiting for life to settle down, and to just embrace whatever life brings at the moment.









Friday, July 24, 2015

Trust

These three astronauts were beyond our physical reach.  But not beyond the reach of human imagination, inventiveness, and a creed we all lived by: "Failure is not an option."

-Gene Kranz, Flight Director for Gemini, Mercury, and Apollo Missions; 
p. 13 Failure is Not an Option


Listening to Gene Kranz speak about his experiences with Apollo 13 was riveting, to say the least.  First of all, at age 82, he spoke for 50 minutes without a pause or a single "um."  (He had one minor loss of train of thought that he chuckled at.)  The detail in his speech was certainly impressive, and he is a wonderful story teller.  We can all learn so much about perseverance and ingenuity from that experience.  But one aspect of his speech struck me in particular:  trust.  Gene said that the success of that mission spoke volumes about trust.  (I wish I could quote him directly, but I had nothing to take notes with at that moment.)  He said that trust between the Apollo crew and everyone in mission control was key.

Trust.  The idea of trust as a topic for my next blog post had already been rolling around in my head when Gene brought up the idea in his speech.

John and I comment frequently about Alex's level of trust throughout this cancer journey.  As I reflect on the notion of trust, I realize it's an important aspect for all of us.

When Alex was first diagnosed with autism at age two, we set a goal.  We didn't know what the future held (see my post, Crystal Ball), but we knew that we wanted Alex to understand that he was loved, and to be able to trust us.  We weren't at all sure how to accomplish this, but this was our focus.  There wasn't a clear road map, so we trusted our instincts.

We watch Alex at chemo now, and shake our heads in amazement.  We would have never, ever believed that he could handle all of this.  We didn't believe it six months ago.  We surely wouldn't have believed it 20 years ago.

Anxiety is a huge component of autism.  There is a popular saying, "If you know one person with autism, you know one person with autism."  Everyone is impacted differently.  I think it's safe to say that anxiety factors in for most people on the spectrum.  When Alex was first diagnosed, that didn't seem to be a big factor for him.  By the age of four, we knew better.  By the age of six or seven, he was being medicated for anxiety.  If you asked me today what parts of Alex's autism are the most difficult for him, I would say anxiety and communication.  And, even though he is nonverbal, I would still list anxiety as a greater problem for him.

Functioning in the world is difficult for Alex.  It takes medication, practice, and trust.  We want Alex to be part of our family, part of the community, and part of the world in which he lives.  I think that's what most people want for their children.  It sounds pretty simple.  It's not.  Learning to get his hair cut at a salon (see Haircuts), eat in a restaurant, go to a movie, or go to the theatre, have taken years of practice.

Let's look at restaurants.  Alex has a limited range of foods that he eats.  That's also very common for people on the spectrum.  In 1992, that was beginning to be understood, but there wasn't a lot written to help us figure out how to make this easier.  Not unlike many families with young children, "eating out" usually meant eating a fast food meal in the car.  We could go to McDonald's and Burger King.  Chains work well because the menu and environment are the same no matter where you go.  Gradually, we started going in to those restaurants and trying the play land.  We hovered nearby, and more than once had to go in and rescue Alex when he got "stuck" (I mean that in a motor planning sense; if you have a child on the spectrum, you know what I mean).  When Jess got old enough, she either led or followed him around, and she rescued him when needed.  We had to watch his behaviors and listen to his vocalizations to try to predict when he was done before he became overstimulated and had a melt-down.  When we were eating, we had to keep a close eye on him because he would "steal" french fries from other tables.  (Think about it, as a parent, you let your child eat off your plate or share your food.  When you have autism and don't understand language and social conventions, you have no idea that all the food around you isn't fair game.  Some people were understanding; some were definitely not.)

Alex got good at fast food restaurants, but I'm always greedy.  Once Alex meets a goal, I want more.  The next level was Culver's and Fazoli's.  You order food at the counter, but you have to wait until they bring the food to you.  (Make no mistake, the wait time to dish up the spaghetti and walk it to the table was quite a stretch for Alex at first.)  The quality of food was a step up as well, which was a welcome change.

As Alex approached middle school years, I started thinking about what we could do for activities in the community as a family.  Eating in restaurants seemed like a reasonable goal.  So we started trying restaurants where servers actually came to your table and take your order.  There were hits and misses.  Sometimes he would refuse to get out of the car.  Other times, we got him inside, but the food we ordered looked or smelled too different and he would refuse to eat it.

We learned to look for restaurants with booths with extra high backs, and with minimal ambient noise.  (My brother has a theory that they pump in extra "crowd" noise at Texas Roadhouse to make it seem like a party atmosphere; I don't know if that's true, but I do know that it is not an "Alex" restaurant.)  We go early.  Lunch at 11:00 and dinner at 4:00 means we avoid the crowds which means less noise and less waiting.  We now have at least half a dozen restaurants that Alex likes.  

Even though he is "good at restaurants" now, that doesn't mean he can always handle it.  We have to be a able to "read" him on any given day, and try to see if he has enough emotional energy to enjoy himself.  It isn't something he's able to do every day.

So I guess this is where the trust comes in.  Over time, Alex has learned to trust us.  I think he knows, I hope he knows, that we're always there to help him.  We won't make him go into a restaurant that we think is overwhelming for him, or that doesn't have food he can eat.  We'll nudge him in order to help him expand his world, but we'll always try to balance the two.

It makes me chuckle now to think about all the work that went in to all of these things, when now the thing we're dealing with is cancer.   So many things I thought were a big deal, just aren't any more.  I guess that's true for everyone who deals with a life threatening illness, or the death of a loved one.  It helps you put things in perspective.

So now Alex has to trust us when he's in the biggest fight of his life.  This is a guy who used to have a "resting" heart rate of 110 when waiting for a doctor's appointment.  His face and neck would be flushed and he'd be having a full-blown panic attack.  Alex's blood pressure was elevated last week, but that's the first time in all these months.  He looks to us for strength and reassurance.  He must trust us, and the doctors and nurses, to be able to do what he's been doing these last months.  Anything to do with doctors, clinics, or hospitals are one of the biggest, if not the biggest, triggers of his anxiety and panic disorder, and he now goes to the doctor at least once a week and has had so many difficult procedures in the past seven months.  It boggles my mind.

John and I have had to learn a few things about trust as well.  We would much rather be the ones giving help and support and not be the ones asking for it.  Jessica's first sentence was, "I can do it myself," and she came by that honestly.  John and I are very independent and pride ourselves on being self sufficient.  Letting Alex move out took a lot of trust.  No one knows Alex like we do, and no one can care for him as well as we do.  At the same time, we have been trying to expand his world for his whole life.  We believe our job as parents is to raise our children to live independent lives.  (In hind sight, that was a stupid idea.  They believed us, and now we're alone.  What the heck?)  We believed that was still true for Alex.  We have to trust that Alex's caregivers are keeping him safe, nurturing him, and giving him the life he deserves.  We believe that Alex would find a way to let us know if this weren't true.  Every time we pick him up, he is excited to see us; but every time we bring him back home to his house, he is happy to go.  And Alex has grown in ways that he couldn't have if he were at home with us.  He spends his days with young men his own age.  He's done things and gone places we wouldn't have dared take him, and he's been successful.

Trusting the medical community was a big unknown at the start of this journey.  Our concern was not for the medical knowledge, but in understanding Alex's disability.  When Alex was small, we assumed that all medical people also understood autism.  Turns out, that wasn't and still isn't true.  We've learned to be explicit about what Alex can and cannot do.  We've tried to figure out how to be assertive about his needs without being a total pain in the behind.  We're generally pretty successful at convincing folks we won't get in their way, but doing their job will be much, much easier if they keep us around to support Alex.  We ask a lot of questions.  (A LOT of questions.)  But we also try to balance that with the fact that we are not medical professionals, and this is not our area of expertise.  They don't have time to bring us up to speed on 20 years of schooling and experience and still get his chemo started on time.  At some point, we have to trust the answers they give us and go with it.  That balance is hard to find.  (And, to be fair, Alex's oncologist may tell you we haven't actually found it.  So far, he smiles when he sees us, so I'm taking that as a sign we aren't a total pain in his tuckus.)

I used to worry that Alex wouldn't be able to trust us, or to really understand how much we love him.  I don't worry now.  I see it in his eyes at every appointment, and every visit.  I see it in his strength, and I see it when he leans on us when he's scared.  And Alex can lean on us, because we can lean on so many others.  No one wants something bad to happen to themselves or a loved one, but when it does, you really learn who you can trust.  I guess Alex isn't the only one who's learned that lesson.

Saturday, July 4, 2015

Dear Cancer - You Suck.

When everything seems to be going against you, remember that the airplane takes off into the wind, not with it.

-Henry Ford

Alex is snoring peacefully next to me on the couch, in his patented pillow-over-the-face sleeping position.  Don't be alarmed, he's been sleeping this way since he was given his first pillow.  I learned years ago to buy very lightweight pillows, and he always creates an air-hole for himself.  Usually, his head is tipped sideways and the pillow is actually resting on the side of his face.

It looks likes this:


This habit of his provided for some funny moments when he was in the hospital overnight in January.  The night nurse walked in to check on him and just about went in to cardiac arrest.  I had to explain that this was just the way Alex always sleeps.

Chemo #10 was Thursday.  It went fine, but each treatment gets more difficult for Alex both emotionally and physically.  Wednesday night he was already anxious, and Thursday morning he really did not want to get cleaned up or get going.  He can't tell us that this whole thing is BS and he doesn't like it, but believe me, he gets his point across.  We know his vocalizations and body language so well.  You can see it in his face.

We take for granted how we communicate and how we read Alex, but you're probably thinking "How do they know what he's thinking and feeling?"  First of all, as I've said before, I would give absolutely anything for one hour of Alex being able to verbalize what he's really thinking and feeling.  Since that has never happened, John and I have to be detectives.  All I can tell you is that we discuss what is about to happen the same way you would discuss what's going on with anyone.  "Alex, remember tomorrow is chemo day.  It's number ten.  After this, there's only two more to go."  He doesn't particularly react in any way, but you keep the conversation going.

There's no doubt he knows what's going on.  We go to the oncology office every Thursday, and have been doing this for five months.  One week is chemo, and the opposite week is a blood draw to check blood counts.  His demeanor is very different depending on which Thursday it is.  We certainly tell him what's about to happen, but he definitely is well aware.  On a blood draw Thursday, he gets out of the car and leads the way to the elevator and office.  We wait in the waiting room, and as soon as Hope comes out to call his name, he's up and out of the chair and going to the blood draw room.  Everything about his body language is "let's just get this done!"

Chemo Thursdays are very different.  He is completely cooperative, that's not the issue.  He gets out of the car, but reluctantly.  He walks very slowly through the parking lot, to the elevator, and into the clinic.  Every step is an effort.  This week, he seemed to walk even more slowly.  This week, there were no smiles in the waiting room.  He knows the routine, and there is comfort in that for him, but he also knows what to expect, and he's sick of it.  Literally and figuratively.

I think that the chemo the week of the wedding we had hit sort of a "sweet spot."  He'd had enough chemo to make him start feeling better from the cancer.  He looked good; healthier than in January.



Now, it's all catching up with him.  I feel terrible even saying that, because I know he could have been even so much sicker throughout this whole process.  The doctors and nurses are amazed at how well he's doing and how well he's feeling.  But it is taking its toll on him.  He's veins are protesting.  We do the peripheral IV for the chemo.  Most patients have a port implanted.  At first, we didn't have time.  Once they discovered the huge mass on his airway, chemo had to start the next day.  At this point, John and I were still reeling from the diagnosis, and none of us knew how Alex would tolerate or cooperate for treatment. At each of the first chemo treatments, we would discuss the port with the doctor.  We started out with a "wait and see" attitude.  As we watched him go through treatments, and handle everything so well, we had time to analyze the pros and cons of a port.  It would certainly save him from the IV stick each time, but then there's a foreign object, implanted under his skin.  This is not a small issue.  Throughout this time, Alex was healing from his January surgery.  His incision under his chin was healing beautifully, but it bothered him.  It didn't feel right.  So he picked at it.  He is a master of picking when no one is looking.  All of his caretakers and family members were vigilant about watching him and nagging him.  But it's impossible to watch him that closely 24 hours a day.  What would he do with a port?  What if he ripped it out?  We stayed with him in the hospital, and we stay with him during every procedure and treatment, so that he can't rip an IV out.  Over time, we realized that a port was not an option for Alex.



So, no port.  But his veins are not happy.  The chemo takes its toll on them as well.  The blood draw is usually one quick poke and done.  This week, Hope couldn't get the vein to give up any blood.  She tried twice, then decided to wait for the IV so she didn't have to put Alex through any more.  In came Ben (no pressure there - uncooperative veins, anxious patient, and mom and dad watching over your shoulder).  It now takes both John and I to help hold Alex's arms so he doesn't pull back.  He tries to pull his arm away at first.  He doesn't want to do this.  But always, at the critical moment, he freezes and holds perfectly still.  He watches intently, total concentration on his face as well.  We all hold our breath as we wait to see if the blood return shows that the IV has reached the correct spot.  Ben got it in two tries.

Once the IV is in, the rest goes like clockwork.  They gave the Adavan first this time, to help with the anxiety.  I think they upped the dose as well.

Four pre-meds and four chemo meds; four hours of IV.  We watch to make sure Alex doesn't move his arm.  We watch to see if he seems to have any discomfort or burning so they can adjust the rate of the IV.  One med in particular is so toxic that it would immediately ulcerate the skin if it leaked.  The final chemo med takes the longest.  That last bag takes two hours.  It seems to make Alex feel the worst.  You can watch the color drain from his face as that one is being pumped in him.

When he's all done, we remind him that he might feel light headed or dizzy.  We try to get him to take a hand or an arm as we walk out.  We know everyone by name now.  "Bye!  See you next week."  That's a weird feeling.

Alex won't take a hand or an arm though.  It's interesting, for someone who requires so much support, he is fiercely independent.  He pretty much sprints to the elevator and sprints to the car.  We try to keep up, afraid he'll keel over and do a face-plant in the parking lot, but he does just fine.

Usually, we take him to his house and put him to bed.  This weekend is a holiday weekend, so we brought him home.  We purposely didn't make any plans.  We'll just see how he's feeling and enjoy being together.

His attitude is still good, but we see more anxiety and more discomfort.  Friday was not his best day. He seemed more anxious and uncomfortable.  Then John and I remind ourselves that Alex is really sick, and treatment is really hard.  He's being doing so well, sometimes it's easy to forget how much he's going through.


Only two more treatments.  We asked the doctor when Alex will start feeling better, what we should expect.  He said it will take six months.  He'll have good days and bad, and gradually more good than bad, but it will take a good six months for the body to regenerate what it has lost through chemo.

So, it will be a year or more, by the time we're done before Alex feels like himself again.  We are painfully aware that many are not afforded that opportunity.  And that cancer will always be part of Alex's story.  We'll always be watching over our shoulders, always monitoring and testing.  But still, the prognosis is positive.  

This Fourth of July, we're grateful that Alex is here to celebrate with us.  By Labor Day, we'll be scheduling a PET scan to determine how well the chemo worked.  By Halloween, he should start having more energy.  I'm reminded that "slow and steady wins the race."  That's okay.  We're ready for the long haul.  Don't worry Alex, we've got your back.

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:  wwww.jennakutcher.com.

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.