Saturday, April 9, 2016


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

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

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

John with his 99th and 100th Young Eagle.

Our 1967 Piper Cherokee.

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

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

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

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

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

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

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

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

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

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

Today, though, just felt good.

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

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

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

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

Saturday, April 2, 2016

Light it Up Blue for Autism

Today is World Autism Day.  It's no longer simply autism awareness, because awareness isn't enough. April is a time to accept, understand, and include individuals on the autism spectrum.

As I watch breakthroughs in research, I hope that they can find treatments that will ease some of the challenges that come with being on the spectrum.

Alex's anxiety and communication difficulties mean he can't live independently and curtail the kind of future that he will have.  That is heartbreaking.  At the same time, I have no desire to erase all traces of his autism.

I could easily write a list of the ways that autism has broken my heart, but I'm not going to.

Today, I want to share the ways that autism has made my life better.

8. My Teaching
Autism has made me a better teacher.  Being the parent of a special needs child has informed my teaching in so many ways.  It helps me in my classroom with my students, and it helps me support parents, especially when they are new to a diagnosis.  I know what it's like to be the parent in an IEP meeting.

7. Problem Solving
Parenting, teaching, living - all of those involve a fair amount of problem solving.  Autism does that to the nth degree.  Why does he have to hide the videos in the laundry room?  Why does he hide certain videos in the children's department at the public library?  (Possible Answer: because he loves them so much and they are overwhelming.  Thank goodness we had an understanding librarian.) We've learned to pay attention and to figure out solutions.

6. How I View the World
Living with someone with sensory processing issues makes me look at the world in a whole different way.  I look for ways in which the world can be overwhelming.  Are the sights, sounds, smells, overwhelming?  Taking Alex out in the world requires us to think like him so that we can be successful.  It's tricky, since he can't tell us what the issues are.  We have to watch him and really pay attention.

5. Patience
I am not a naturally patient person, and my life requires me to have an abundance of it.  Parenting someone on the spectrum requires some patience (and a sense of humour). As Alex continues his battle with cancer, finally in remission, that patience has been even more important.

4. Learning to Forgive Myself as a Parent
I spent many years chasing the best therapy, the best treatment, and watching the media reports that said if I just did the "right" thing, Alex would be "indistinguishable from his peers."  Alex has big-time, classic, autism.  I didn't cause it, and I can't make it "go away."  But I finally feel like what I do for him is enough.  I celebrate his, and our, successes.

3. My Marriage
John is the best possible partner.  I can count on him for anything, and he knows he can count on me. We work together with all the challenges that autism and parenting brings, and we enjoy the great family moments.  John has always reminded me to focus on the positive and not get mired down in the difficult.

2. My Family
We have a bond so strong that it will never be broken.  Other families may have one as strong (just kidding, you think you do, but you don't), but none has one stronger.  Seriously, though, we are united in every way.  Alex has an amazing sister who loves him without question.  We had to learn how to support both children, who are so very, very different.  We didn't, and don't, always get it right.  We love each other, trust each other, and depend on each other.  Going through the things we have together has made us stronger and made us appreciate each other more.

Photo by Jenna Kutcher

1.  Alex.  
Just Alex.  You are enough, just the way you are.  You make my heart sing.