Life is what happens when you're busy making other plans.
-John Lennon, from "Beautiful Boy"
-cartoonist John Saunders, Reader's Digest, 1957
One of my favorite quotes is "life is what happens when you're busy making other plans." Although it's been attributed to John Lennon, and was a line in the lyrics of his song "Beautiful Boy," a little digging reveals that it was attributed to cartoonist John Saunders in Reader's Digest in 1957. It is a quote I try to take to heart.
I've written multiple times about the lessons cancer has taught me - is still teaching me. One that I am working on is to stop saying, "When my life settles down." I've been saying it and; worse yet, believing it, for my entire adult life. I repeat it without thinking it through. Yes, I have a busy life, as many of us do. Yes, I don't always feel in control of the "busy-ness" of my life. The truth is that there is much in my life that is of my choosing. And, like most everyone, there are things in my life that are not of my choosing. But every bit of it is just a life.
This lesson is like a two-by-four upside by head once again as I contemplate the fact that Jessica graduated from college, and Alex finished going to school, five years ago this June. I thought that not having Alex in school, and not having Jessica in Boston and in college, would mean things would "slow down." I wasn't entirely sure what was next, but I somehow thought the pace of our lives would change - would lessen, become somehow more "manageable."
That thought is laughable.
Looking back five years instead of forward, I could not have scripted, nor even imagined, the five years we have lived through. Not that it's all been bad, but it has been filled with many significant events and emotions.
It's a darn good thing that my crystal ball didn't work, because I wasn't prepared for what we have been through. As usual, life has to unfold in its own way, in its own time, in order for me to absorb it all.
Five years ago, my mother-in-law was still "her." She was vibrant and funny and loving and an important part of our lives. We lost her painfully, slowly, long before her death a year ago.
My mother was living independently and beginning to have some serious health issues, but still managing to take care of herself. The past three years have been tumultuous for her (that's putting it mildly, to be frank), and she is now living safely and contentedly in a great facility. I am grateful that she is well cared for, but I see her slipping away physically and mentally.
Jessica graduated, spent three weeks at home, and then John and I drove her to her new life and dream job in California. We visited her many times and watched her grow into an adult and began really figuring out this whole parent-of-an-adult relationship. She flourished in her job, she married, and then she got an out-of-the-blue job offer in Wisconsin. This was something none of us ever imagined would happen. But here she is, less than 25 miles away, in her new home, with her new husband and two dogs, finding her way at a new dream job.
We have a wonderful son-in-law as part of our family. If I had hand-picked someone for my daughter to marry, I could not have done better. He is smart, talented, funny, and fiercely loyal. He understood right away all that comes with falling in love with someone with a special needs sibling. We are all so very lucky to have him in our family.
Three of my four siblings have faced significant health issues of their own over the past five years. My oldest sister has lost her son and her husband, and welcomed twin grandsons. As we grow older and face loss, illness, and other challenges, I feel that we've grown closer.
We've lost a number of friends and family members over the past five years. It just never gets any easier. Soon we will mark the first anniversary of our friend, Jeremy's, passing. Rusty's dad, Mark, died only four and a half months ago. My brother-in-law, Don, passed away just over three months ago. I don't think he ever got over the death of his son, almost five years ago. He seemed to age overnight. These are only a few of the people we lost. So much loss in so short a time, and each one leaves a gaping hole and a grieving family.
Alex moved out three years ago. He was (is) thriving in his new home - becoming more independent and forging new relationships. He had a part time job and blossomed.
John and I were "empty nesters," figuring out life with no children at home. I learned to fly. I joined an EAA chapter and became secretary and newsletter editor. We bought a plane. John and I traveled. We visited Boston, New York, Chicago, Washington D.C., Maine, Niagara Falls, LA, San Franciso, San Jose, London, Disney World - trips with and without our children. Things we could only dream about doing as young parents.
Then cancer came calling. Our choice was to let it crush us, or stand up and fight. That choice is no choice, not really. We found strength within us we didn't even know was there. We became closer as a family. We learned how beloved Alex really is. We learned who we could really, truly, count on.
Alex is in remission and doing well. I don't yet feel like we're entitled to call him a "survivor." I'm not sure how much time has to pass, or even if there's a "rule," but it somehow feels like tempting the fates to use that word. His next PET scan is in three weeks. I'm already getting nervous. I don't want to miss this moment by worrying. We've had many wonderful moments with him in the 4 1/2 months since his transplant. I hope there are many more to come.
I am trying to embrace the lesson that our old life is gone, that the overused phrase "new normal" applies to us now. We are not the same individuals, nor are we the same family, that we were before Alex got cancer. I don't really understand exactly what this "new normal" means for us.
I don't feel invincible. I feel like I can't afford to waste a moment. I feel like the moments need to be savored more, enjoyed more, embraced more, but I don't really know what that means. Life still has bills and work and responsibilities, yet everything feels different.
I don't know what the next five years will bring. For the first time in my life, I don't really want to know.
"Where do you see yourself in five years? in ten years?"
I can't answer that question.
I doubt that my life will "slow down." I can't predict what will happen. I can't live in fear. I have to believe that whatever unfolds in the next five years I will be strong enough, and wise enough, to embrace it.
And I hope I have learned to have the good sense to appreciate and relish all that is good.
Thursday, May 19, 2016
Wednesday, May 4, 2016
Mid-Life Crises and the Meaning of Life
Life's a piece of shit, when you look at it
Life's a laugh and death's a joke, it's true
You'll see its all a show, keep 'em laughin as you go
Just remember that the last laugh is on you
Monty Python - Always Look On The Bright Side Of Life Lyrics
I've always approached my life with certainty - I knew where I was headed, and why.
I've had to learn, repeatedly - because the lesson comes hard for me, that I can't control everything and that I must make many adjustments. (Read Turbulence.)
I'm told that the summer before kindergarten, I planned what courses I would take by writing it all out on paper with a crayon. My older sisters were in high school and planning their course work, so I thought I should do the same.
I would take reading, art, and music.
I would not take math or PE.
Mom told me it wasn't up to me. There was no choice in kindergarten.
Rats.
As an adult, my plan has included my family and a career I'm passionate about. It's included community service and a variety of pursuits - theatre, travel, aviation.
I didn't grow up wanting to be a teacher. During my high school and early college years, I envisioned life as a family attorney or in politics, but I had an epiphany when my "fall back" plan of a degree in elementary education on my way to law school turned out to be what I was meant to do. When I started the courses that took my into classrooms with kids, I felt I was "home." I knew that was where I belonged. I wanted to make a difference.
Even as a young mom, devoted to my family, I didn't want to leave teaching. Aside from obvious financial reasons, I worked for a purpose. Leaving my own family was bearable because I was making a difference in the lives of others. I liked the personal challenge, the creativity, the autonomy. Teaching is hard and rewarding work.
John has likewise been devoted to his work. He is a born problem solver, and the favorite part of his job is finding solutions to problems. He doesn't like being away from home, but he loves start ups. He has many stories of hours and days in a mill starting up new machines - times where he would rotate through 24 hours of shift changes and not have left the mill himself. He has long standing relationships with his business partners and the people he works with. Although John is a part owner of his business, and has been for almost 25 years (I really don't remember exactly how long), he will never, ever say a colleague works "for" me. It is always works "with" me and the fact that he is an owner will only come up if it is truly relevant to the conversation.
For the first time in my life, I am struggling to find the meaning and the purpose.
Maybe it's just a stereotypical mid-life crisis.
Maybe I should have been trying to "find myself" decades ago and I'm just behind.
I don't know.
Teaching is hard work, and it's really a hard time to be a teacher right now. I know that many of you think teachers are whiny, and I'm sorry that you feel that way. I don't need to be adored, but it's really hard to be vilified. There's been lots of action on the political front, blaming all sorts of things on teachers. That's hurtful, but not as hurtful as the friends, acquaintances, and even some family members who have piled on. I don't mention this to start a political debate about teachers - that's a conversation for another time and place - but to say that, as a teacher, that message is hard to take. It is painful.
Even through Alex's illness and transplant, I was driven by purpose - taking care of Alex, taking care of my students, taking care of our family.
Today, Alex is day +128 post transplant, in remission, but early on. I am learning (or trying to learn) how to live with the specter of relapse hanging over our heads. I am trying to appreciate that today is a good day.
But I find myself with a whole lot of "YOLO" going on. That's all great in Facebook memes and pop culture that tells you to live for today, but it isn't that simple. I have an established career that I love, I have responsibilities, and bills to pay and a retirement to save and plan for. I'm only 53. I'm not ready to retire, but I find myself wondering, what next, what now?
I've lost the fire, the certainty of purpose that I knew what I was doing.
A year and a half ago, I understood my life. Then cancer came calling. And I had a new purpose - save Alex. Save Alex, and try to keep the rest of my life going at the same time.
And now Alex is doing well. He's recovering. He's in remission.
But my old life doesn't feel the same. I'm not the same. And I can't tell you yet what that means.
I do know that cancer makes you re-evaluate everything. I know that's not a news flash to anyone else who has gone through this, and I also know that I'm not the cancer survivor, but I am a survivor of sorts. Alex's fight was our fight because he couldn't do it alone.
I feel like I don't have time to waste, and I'm afraid to put my life off until later.
In the past year and a half, I've also lost several people who I care about. People who are gone too soon. Lives that were not yet finished. It makes you wonder and it makes you re-evaluate.
I don't have the answers; just the questions.
Spending time with my kids makes me happy. Spending time with my husband makes me happy. Flying airplanes, friends, my dog - those things bring me joy and contentment. I'll keep doing those things as much as I can while I try and figure the rest of things out.
I'll take a cue from "The Meaning of Life" from Spamalot.
Always Look on the Bright Side of Life
Life's a laugh and death's a joke, it's true
You'll see its all a show, keep 'em laughin as you go
Just remember that the last laugh is on you
Monty Python - Always Look On The Bright Side Of Life Lyrics
I've always approached my life with certainty - I knew where I was headed, and why.
I've had to learn, repeatedly - because the lesson comes hard for me, that I can't control everything and that I must make many adjustments. (Read Turbulence.)
I'm told that the summer before kindergarten, I planned what courses I would take by writing it all out on paper with a crayon. My older sisters were in high school and planning their course work, so I thought I should do the same.
I would take reading, art, and music.
I would not take math or PE.
Mom told me it wasn't up to me. There was no choice in kindergarten.
Rats.
As an adult, my plan has included my family and a career I'm passionate about. It's included community service and a variety of pursuits - theatre, travel, aviation.
I didn't grow up wanting to be a teacher. During my high school and early college years, I envisioned life as a family attorney or in politics, but I had an epiphany when my "fall back" plan of a degree in elementary education on my way to law school turned out to be what I was meant to do. When I started the courses that took my into classrooms with kids, I felt I was "home." I knew that was where I belonged. I wanted to make a difference.
Even as a young mom, devoted to my family, I didn't want to leave teaching. Aside from obvious financial reasons, I worked for a purpose. Leaving my own family was bearable because I was making a difference in the lives of others. I liked the personal challenge, the creativity, the autonomy. Teaching is hard and rewarding work.
John has likewise been devoted to his work. He is a born problem solver, and the favorite part of his job is finding solutions to problems. He doesn't like being away from home, but he loves start ups. He has many stories of hours and days in a mill starting up new machines - times where he would rotate through 24 hours of shift changes and not have left the mill himself. He has long standing relationships with his business partners and the people he works with. Although John is a part owner of his business, and has been for almost 25 years (I really don't remember exactly how long), he will never, ever say a colleague works "for" me. It is always works "with" me and the fact that he is an owner will only come up if it is truly relevant to the conversation.
For the first time in my life, I am struggling to find the meaning and the purpose.
Maybe it's just a stereotypical mid-life crisis.
Maybe I should have been trying to "find myself" decades ago and I'm just behind.
I don't know.
Teaching is hard work, and it's really a hard time to be a teacher right now. I know that many of you think teachers are whiny, and I'm sorry that you feel that way. I don't need to be adored, but it's really hard to be vilified. There's been lots of action on the political front, blaming all sorts of things on teachers. That's hurtful, but not as hurtful as the friends, acquaintances, and even some family members who have piled on. I don't mention this to start a political debate about teachers - that's a conversation for another time and place - but to say that, as a teacher, that message is hard to take. It is painful.
Even through Alex's illness and transplant, I was driven by purpose - taking care of Alex, taking care of my students, taking care of our family.
Today, Alex is day +128 post transplant, in remission, but early on. I am learning (or trying to learn) how to live with the specter of relapse hanging over our heads. I am trying to appreciate that today is a good day.
But I find myself with a whole lot of "YOLO" going on. That's all great in Facebook memes and pop culture that tells you to live for today, but it isn't that simple. I have an established career that I love, I have responsibilities, and bills to pay and a retirement to save and plan for. I'm only 53. I'm not ready to retire, but I find myself wondering, what next, what now?
I've lost the fire, the certainty of purpose that I knew what I was doing.
A year and a half ago, I understood my life. Then cancer came calling. And I had a new purpose - save Alex. Save Alex, and try to keep the rest of my life going at the same time.
And now Alex is doing well. He's recovering. He's in remission.
But my old life doesn't feel the same. I'm not the same. And I can't tell you yet what that means.
I do know that cancer makes you re-evaluate everything. I know that's not a news flash to anyone else who has gone through this, and I also know that I'm not the cancer survivor, but I am a survivor of sorts. Alex's fight was our fight because he couldn't do it alone.
I feel like I don't have time to waste, and I'm afraid to put my life off until later.
In the past year and a half, I've also lost several people who I care about. People who are gone too soon. Lives that were not yet finished. It makes you wonder and it makes you re-evaluate.
I don't have the answers; just the questions.
Spending time with my kids makes me happy. Spending time with my husband makes me happy. Flying airplanes, friends, my dog - those things bring me joy and contentment. I'll keep doing those things as much as I can while I try and figure the rest of things out.
I'll take a cue from "The Meaning of Life" from Spamalot.
Always Look on the Bright Side of Life
Saturday, April 9, 2016
Breathe
Today has been a fun day. I'm beginning to feel, finally, like I can breathe again. It seems I've held my breath for over a year.
This morning John and I volunteered at the Pancake Breakfast and Young Eagle Rally for our EAA Chapter. John flew six kids, and I worked the registration table. It was unseasonably cold and there was snow on the ground (get your act together, Wisconsin), but visibility was spectacular and the air was smooth as glass.
John has been a member for a number of years, but I just joined the chapter three years ago. It's one of the things we threw ourselves into when Alex moved out of the house. Bright blue skies in what has been a dreary late winter/early spring enticed many pilots to our pancake breakfast, and our chapter flew 32 Young Eagles this morning.
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.
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.
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.
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| Look at all that hair! Alex at our house - April 9, 2016. |
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| 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.
1. Alex.
Just Alex. You are enough, just the way you are. You make my heart sing.
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.
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| Photo by Jenna Kutcher |
1. Alex.
Just Alex. You are enough, just the way you are. You make my heart sing.
Monday, March 28, 2016
Turbulence
John and I went flying tonight. I practiced take offs and landings. Landing is the most difficult, and most dangerous part, of flying, so pilots practice it a lot. We haven't done as much flying as we would have liked in the last six months because of Alex's cancer, so I'm feeling rusty. One of the great things about flying with your spouse is that you have someone to give you pointers. I love flying, but I really, really love flying with John.
Note: since we're both pilots, our "rule" when we fly is that whoever is sitting in the right seat (the non-pilot seat) must address the other one as "captain." Example: "Did you realize you're a few degrees off your heading, Captain?"
On tonight's flight, I asked John to give me feedback on my landings. The winds were light and the air was smooth. Our flight went well and I did three good landings.
One thing I need to work on is when I'm flying in turbulence. We encounter some light to moderate turbulence from time to time. When you're flying through that turbulence, you have to learn to just ride through it, and not try and over-control the airplane to fight it. I tend to over-control my way through it, which makes the bumps more noticeable instead of less.
After today's flight, John and I were talking about Alex and life in general, now that we are home and trying to get back to "normal," whatever that means.
John compared life in the last year and a half to that airplane turbulence, and how we have to ride through it without trying to continually fight it. When we fly, we put on our seatbelts, set our controls for straight and level flight, and set our course. Once that is established, the idea is not to chase every bump and burble in the wind. We have to know when to change the controls, and when to just ride through the bumps. Life is like that, too. You have to know when to adjust, and when to just ride through the bumps.
Alex is doing amazingly well. He's in remission. His maintenance chemo is going well. He looks great. His color is good, he's getting hair and whiskers and eyelashes and eyebrows.
Note: since we're both pilots, our "rule" when we fly is that whoever is sitting in the right seat (the non-pilot seat) must address the other one as "captain." Example: "Did you realize you're a few degrees off your heading, Captain?"
 |
| John as PIC (pilot in command). Somehow we have more pictures with him in the left seat than with me in the left seat. Hmmm. |
On tonight's flight, I asked John to give me feedback on my landings. The winds were light and the air was smooth. Our flight went well and I did three good landings.
One thing I need to work on is when I'm flying in turbulence. We encounter some light to moderate turbulence from time to time. When you're flying through that turbulence, you have to learn to just ride through it, and not try and over-control the airplane to fight it. I tend to over-control my way through it, which makes the bumps more noticeable instead of less.
After today's flight, John and I were talking about Alex and life in general, now that we are home and trying to get back to "normal," whatever that means.
John compared life in the last year and a half to that airplane turbulence, and how we have to ride through it without trying to continually fight it. When we fly, we put on our seatbelts, set our controls for straight and level flight, and set our course. Once that is established, the idea is not to chase every bump and burble in the wind. We have to know when to change the controls, and when to just ride through the bumps. Life is like that, too. You have to know when to adjust, and when to just ride through the bumps.
Alex is doing amazingly well. He's in remission. His maintenance chemo is going well. He looks great. His color is good, he's getting hair and whiskers and eyelashes and eyebrows.
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| Alex - February 2016 - Day +36 after stem cell transplant. No hair, eyelashes, or eyebrows, but starting to feel better. |
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| Dad and Alex - March, 2016 |
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| Alex - March 2016 - Doesn't he look great? |
It's like we're back on course to where we were fifteen months ago. We were adjusting to being empty nesters and figuring out the next phase of our lives. Alex was gaining independence and adjusting to his new home and life as well.
I'm going to be completely honest here. I've tried to be honest in all my posts up to this point, and I'm not going to stop now. Life should be all roses right now, but it doesn't feel that way.
On paper, our lives look amazing right now. Alex is doing well and is in remission. Jessica and Rusty are doing great and live 25 miles away. (I still can't believe that's true!) John and I are back at work full time and have some free time to ourselves.
In reality, it just feels "off." I'm not unhappy, and I'm well aware of all that I have to be grateful for, but I'm not exactly happy, either. It's like there's residual turbulence left from the last fifteen months.
After living with the fear that Alex could die, and after losing several people close to me in the last fifteen months, I find myself questioning what I'm doing with my life. What is my purpose? What am I waiting for? I don't want to live with regret, and my priorities have certainly shifted. There is certainly a fair amount of "YOLO" going through my mind.
When I took Alex to his psych appointment a few weeks ago, his doctor described the process the brain goes through during a trauma. The brain learns really quickly that it's in danger, but it takes a whole lot longer for it to learn that the danger is over. On average, he said, it takes about nine months to recover from a trauma like we've been through.
Apparently, this is yet another time when I'm supposed to be patient. I can't expect to go through all that I've gone through, all that our family has gone through, in the last fifteen months and be unchanged. And even though we've resumed the life we were living before Alex's cancer, it really isn't the same. We're not the same.
I have to trust that we can make it through this phase, too. I have to give myself permission to feel what I'm feeling, and work through it. I have to remember that this, too, will take time.
Cancer has left its scars, and not just on Alex. John and I have them, too. Although the scars may never disappear, I am confident that they will heal in time. We'll be able to ride through the turbulence.
Friday, March 11, 2016
Decisions, Decisions
I remember vividly the day we brought Jessica home from the hospital. She was born in October, and they day we took her home was grey, cold, and windy. They warned us to keep her covered or the wind would take her breath away.
I remember thinking that those doctors and nurses were clearly out of their minds if they thought sending this fragile human home with us was a good idea.
What on earth had we gotten ourselves into?
That was when the enormity of parenting, and the responsibility we had for another human being really hit us.
We have always taken that responsibility seriously.
Now we're parents of adult children. One of them with a life-long developmental disability and now, a life threatening illness.
I am about to tell you what the most daunting thing is about having an adult child with special needs, and it's probably not what you might think.
Yes, parenting Alex is very intense. He requires constant supervision at the level of a toddler. But that isn't the most daunting thing.
You see, parenting is all about the "gradual release of responsibility" (as we teachers like to say). You are preparing your child to be able to make decisions and care for themselves on their own. You may not always like or agree with their choices, and there may be sleepless nights when you worry about their choices, but your job as a parent is to figure out how to let go.
When your adult child has a developmental disability, that decision making responsibility never shifts. You make decisions for them.
For.ever.
Think about it. Imagine being 25 years old, and never having the ability to make decisions for yourself. You don't get to decide where or how you live, where you work, or what medical treatment to undergo. You don't choose when or where to take a family vacation.
We think about that all the time. We decide it all. We take that very seriously. We always try to think about what Alex would want. We think about what's best for him, but we do try very hard to watch, listen, and pay attention to who he is and to give him a voice as best as we can.
We haven't taken Alex on a big family vacation in a few years. For almost a year and a half now, he's been too sick. But before that, our last couple of trips, were a bit challenging. Places Alex used to love didn't seem to be as comfortable or enjoyable for him. I feel comfortable saying that John, Jessica, and I can read Alex really well. That doesn't mean we know for sure what he's thinking.
He can't say, "I'm glad I'm on this trip, but being away from home and around strangers is hard for me."
Or, "I really don't want to be here. Why did you make me come?"
We think we know, and we make our best guess, but that's all we can do is guess.
Moving Alex into a group home was a huge step for all of us. We felt that he deserved to be as independent as he could be. But in reality, he didn't get a vote. He didn't say he was ready, or that he wanted to but wasn't ready, or that he wished he could stay with us.
We watch and analyze a million things, every day. We watch his moods, his body language, his facial expressions. He has transitioned well to his group home, and I feel confident that he is comfortable there. I believe I'd know if he were scared or unhappy.
He takes several medications, mostly mood stabilizers and anti-anxiety meds at this point. We have to be the ones to evaluate how they're working, and watch for signs of side effects. Over the years, he's taken meds that didn't work or clearly made him uncomfortable. Again, we have to watch everything and pay attention to every detail. How much is enough without being too much?
And then he gets cancer. There are so many decisions about treatment. He trusts us and counts on us. We are his voice; his advocates. We have to think about what he would want.
Throughout his treatment, we had to try and communicate to Alex's medical team about who he is and what he needed to be able to participate in his treatment. We had to figure out accommodations. And we had to ask a lot of questions. We couldn't really know what to tell the team until we understood what they were asking of him.
He far exceeded anything we ever could have dreamed he'd be able to do. But I believe he could do what he needed to because he had us at his side.
The hospital was reluctant to commit to 24 hour 1:1 support. They told us we didn't need to be there around the clock, but we knew that if they wouldn't provide that constant support, we had to be there. Honestly, we would have been there anyway.
The thing is that most of the time Alex is super easy. But you get lulled into a false sense of security and then - bam! - he does something unexpected. At Froedtert, they kept telling us that we should go and get out of the hospital. We never went too far, but one of the few times we both left the room, one time that we went down to dinner together, is when he pulled his PICC line. The nurse was watching from the nurses station, directly across from Alex's room, with the door open. She watched him grab the line and yank it out. There was no way she could get there in time. When we left the room the rest of his stay, someone stayed in the room with him.
Getting his regular meds on time was an ordeal for his hospital stays in Appleton. Even in Milwaukee, I would sometimes have to ask for meds. He can't advocate for himself. And the stakes were too high.
With us there, he felt safe. And being with him made us feel slightly less helpless.
Letting go enough to let him live somewhere else is so hard. Getting back to that after he's been so sick is really hard.
It's much more daunting to make decisions for another adult than it is for yourself.
Interestingly, Alex didn't ask to go home when we were at the hotel for the stem cell collection for a week, and he didn't ask to go home when he was in the hospital (except for the day he pulled the PICC - he said, "ride car" several times and then took matters into his own hands). Our last couple of vacations, he asked to go home daily and packed his suitcase every morning.
If he's willing to stay at the hotel when we went to the hospital every day, or willing to stay in the hospital for 19 days, maybe he's ready for a family vacation. Disney has always been our family favorite. Once he gets a little stronger, we'll plan our celebration trip.
We'll keep watching, listening, and letting Alex guide us. We've been trying some new things with his communication app on his iPad. We keep hoping that someday we'll get a breakthrough and he'll find his voice - find a way to tell us what he really thinks. That would be the most amazing thing. Even if it meant he told me all the times I made decisions and I guessed wrong.
But until that day, we'll keep doing our best. We'll keep being his voice and trying to help Alex live his life the way we think he wants to live it.
I remember thinking that those doctors and nurses were clearly out of their minds if they thought sending this fragile human home with us was a good idea.
What on earth had we gotten ourselves into?
That was when the enormity of parenting, and the responsibility we had for another human being really hit us.
We have always taken that responsibility seriously.
Now we're parents of adult children. One of them with a life-long developmental disability and now, a life threatening illness.
I am about to tell you what the most daunting thing is about having an adult child with special needs, and it's probably not what you might think.
Yes, parenting Alex is very intense. He requires constant supervision at the level of a toddler. But that isn't the most daunting thing.
You see, parenting is all about the "gradual release of responsibility" (as we teachers like to say). You are preparing your child to be able to make decisions and care for themselves on their own. You may not always like or agree with their choices, and there may be sleepless nights when you worry about their choices, but your job as a parent is to figure out how to let go.
When your adult child has a developmental disability, that decision making responsibility never shifts. You make decisions for them.
For.ever.
Think about it. Imagine being 25 years old, and never having the ability to make decisions for yourself. You don't get to decide where or how you live, where you work, or what medical treatment to undergo. You don't choose when or where to take a family vacation.
We think about that all the time. We decide it all. We take that very seriously. We always try to think about what Alex would want. We think about what's best for him, but we do try very hard to watch, listen, and pay attention to who he is and to give him a voice as best as we can.
We haven't taken Alex on a big family vacation in a few years. For almost a year and a half now, he's been too sick. But before that, our last couple of trips, were a bit challenging. Places Alex used to love didn't seem to be as comfortable or enjoyable for him. I feel comfortable saying that John, Jessica, and I can read Alex really well. That doesn't mean we know for sure what he's thinking.
He can't say, "I'm glad I'm on this trip, but being away from home and around strangers is hard for me."
Or, "I really don't want to be here. Why did you make me come?"
We think we know, and we make our best guess, but that's all we can do is guess.
Moving Alex into a group home was a huge step for all of us. We felt that he deserved to be as independent as he could be. But in reality, he didn't get a vote. He didn't say he was ready, or that he wanted to but wasn't ready, or that he wished he could stay with us.
We watch and analyze a million things, every day. We watch his moods, his body language, his facial expressions. He has transitioned well to his group home, and I feel confident that he is comfortable there. I believe I'd know if he were scared or unhappy.
He takes several medications, mostly mood stabilizers and anti-anxiety meds at this point. We have to be the ones to evaluate how they're working, and watch for signs of side effects. Over the years, he's taken meds that didn't work or clearly made him uncomfortable. Again, we have to watch everything and pay attention to every detail. How much is enough without being too much?
And then he gets cancer. There are so many decisions about treatment. He trusts us and counts on us. We are his voice; his advocates. We have to think about what he would want.
Throughout his treatment, we had to try and communicate to Alex's medical team about who he is and what he needed to be able to participate in his treatment. We had to figure out accommodations. And we had to ask a lot of questions. We couldn't really know what to tell the team until we understood what they were asking of him.
He far exceeded anything we ever could have dreamed he'd be able to do. But I believe he could do what he needed to because he had us at his side.
The hospital was reluctant to commit to 24 hour 1:1 support. They told us we didn't need to be there around the clock, but we knew that if they wouldn't provide that constant support, we had to be there. Honestly, we would have been there anyway.
The thing is that most of the time Alex is super easy. But you get lulled into a false sense of security and then - bam! - he does something unexpected. At Froedtert, they kept telling us that we should go and get out of the hospital. We never went too far, but one of the few times we both left the room, one time that we went down to dinner together, is when he pulled his PICC line. The nurse was watching from the nurses station, directly across from Alex's room, with the door open. She watched him grab the line and yank it out. There was no way she could get there in time. When we left the room the rest of his stay, someone stayed in the room with him.
Getting his regular meds on time was an ordeal for his hospital stays in Appleton. Even in Milwaukee, I would sometimes have to ask for meds. He can't advocate for himself. And the stakes were too high.
With us there, he felt safe. And being with him made us feel slightly less helpless.
Letting go enough to let him live somewhere else is so hard. Getting back to that after he's been so sick is really hard.
It's much more daunting to make decisions for another adult than it is for yourself.
Interestingly, Alex didn't ask to go home when we were at the hotel for the stem cell collection for a week, and he didn't ask to go home when he was in the hospital (except for the day he pulled the PICC - he said, "ride car" several times and then took matters into his own hands). Our last couple of vacations, he asked to go home daily and packed his suitcase every morning.
If he's willing to stay at the hotel when we went to the hospital every day, or willing to stay in the hospital for 19 days, maybe he's ready for a family vacation. Disney has always been our family favorite. Once he gets a little stronger, we'll plan our celebration trip.
We'll keep watching, listening, and letting Alex guide us. We've been trying some new things with his communication app on his iPad. We keep hoping that someday we'll get a breakthrough and he'll find his voice - find a way to tell us what he really thinks. That would be the most amazing thing. Even if it meant he told me all the times I made decisions and I guessed wrong.
But until that day, we'll keep doing our best. We'll keep being his voice and trying to help Alex live his life the way we think he wants to live it.
Monday, February 29, 2016
Empty Nesters, 2.0
It's been more than three weeks since my last post. We've ventured out of this cocoon of cancer treatment and back into some semblance of our "normal" lives.
It's a little bit harder than I thought it would be.
Don't get me wrong, I am grateful, but I've had to muster all this energy for the fight, and now I'm not sure where to go with it all.
Alex is back at his group home and doing well. Anxiety is an issue; most days he seems to do alright, but some days are just rough for him. Anxiety is an issue for cancer patients, even those who didn't start with an anxiety disorder, so it's no surprise this is a challenge for him. We see his psychiatrist next week for the first time since before the transplant, so the timing is good.
Right now, I have to figure out this whole empty nest thing again - "empty nesters, 2.0."
When Alex moved out, it was a huge adjustment. The thing is, Alex needs round the clock supervision. Usually, teenagers become increasingly more independent so that when they move out it's not quite so shocking for their parents. Jessica was so busy her senior year, I sometimes felt like a barely saw her. She had school, a part-time job, and school activities. She kind of eased us in to the transition of her going away to school.
She chose to go to school in Boston. We were thrilled for her and loved visiting her there. When she decided to go to school so far away, we decided we would visit her at least twice a year. She came home on school breaks. Considering how far away she was, we saw her pretty regularly, but it was hard to have her so far away. Then she got her dream job - in California. She moved from one coast to the other. We made travel a priority.
When Alex moved out, it was more similar to your toddler getting his own place. For the first time since we had children, we could come and go with ease. The freedom was nice, to be honest, but it felt strange.
The whole routine of our day changed. John and I had only ourselves to get ready in the morning. Not having Alex to make breakfast for and help get ready in the morning freed up an hour. We no longer had to worry about unexpected things coming up at the end of the work day that would delay us in getting home. When Alex still lived with us, we had to be sure to be home when his ride arrived bringing him home from his adult day service program.
When Alex got sick, obviously that changed everything. For the first six months of his treatment, everyone's schedule revolved around Alex's chemo. Jess flew home several times. John and I worked as much as possible. Cancer dominated everything. Alex continued to live at his group home, but he spent the night before every chemo treatment and procedure. We also tried to fit in visits that did not include cancer treatments.
Little did we know, that first six months was only the dress rehearsal.
When we learned that the chemo didn't work and more treatment was required, we could no longer try and pretend to keep the rest of our lives going.
We had a month where we thought Alex was better. We were sure his follow up PET scan would show his cancer was in remission.
During that month, Jessica was offered a job in Wisconsin. The offer was unexpected. On the one hand, the timing was not great because they had just bought a house in California and Rusty had started a new job. Jessica loved the job she had. But they had come to realize that California was not going to be their permanent home. They were beginning to think about making a change at some point, a few years down the road. Here was an unexpected opportunity with another dream job for Jessica. Rusty has the ability to work from home and he was more than willing to give up the soul crushing commute he had in California.
Jess accepted her job offer, Rusty found a new position, and they made plans to move to Wisconsin. They would stay with us while their California house sold and they looked for a new place to live.
We were beyond thrilled. Our family was due for good news, and this was fantastic news.
Then we got the news that Alex still had cancer.
Cancer really was at the center of everything this time. I took four months off work.
The three of us moved to Milwaukee for three weeks. In a year's time, Alex spent 30 nights in the hospital and either John or I or both of us was with him every night. One or both of us was with him nearly every minute of every hospital stay. We also had a week of outpatient procedures in Milwaukee that required a hotel stay.
We had plenty of togetherness.
Jess and Rusty stayed with us for two months. They moved into their new home about two weeks before John, Alex, and I left for Milwaukee for the transplant.
We got back from Milwaukee, and Alex spent three more weeks at home with us.
Now Alex is back at his group home. I've been back at school for three weeks. In many ways, it feels like I was never gone.
We're going through the motions of our old routine.
It just feels different.
We know that Alex is at high risk for relapse. That specter is there, but we try to not dwell on the possibility.
I feel like I'm adjusting to the kids being gone, all over again. It does feel good. Jessica and Rusty are settling into married life, a new home, new jobs, and a new puppy. Alex is back at his part time job and living at his group home.
John and I are back at work, going to flying club meetings, and going flying. This past weekend, we flew to NYC for my birthday. It's a trip we planned and cancelled twice during Alex's illness. We haven't been away in a long time. We're trying to figure out our time together and to not have that feeling like we should be doing something else.
We're learning what it's like to have our daughter and son-in-law living only 35 minutes away, instead of 2,200 miles away.
Alex still has treatment, but only once every three weeks. Our visits no longer have to be dominated by medical procedures. He still has them, but they are not dominating our lives.
Today is a good day. I'm grateful for the good days. It's been a long time coming.
It's a little bit harder than I thought it would be.
Don't get me wrong, I am grateful, but I've had to muster all this energy for the fight, and now I'm not sure where to go with it all.
Alex is back at his group home and doing well. Anxiety is an issue; most days he seems to do alright, but some days are just rough for him. Anxiety is an issue for cancer patients, even those who didn't start with an anxiety disorder, so it's no surprise this is a challenge for him. We see his psychiatrist next week for the first time since before the transplant, so the timing is good.
Right now, I have to figure out this whole empty nest thing again - "empty nesters, 2.0."
When Alex moved out, it was a huge adjustment. The thing is, Alex needs round the clock supervision. Usually, teenagers become increasingly more independent so that when they move out it's not quite so shocking for their parents. Jessica was so busy her senior year, I sometimes felt like a barely saw her. She had school, a part-time job, and school activities. She kind of eased us in to the transition of her going away to school.
She chose to go to school in Boston. We were thrilled for her and loved visiting her there. When she decided to go to school so far away, we decided we would visit her at least twice a year. She came home on school breaks. Considering how far away she was, we saw her pretty regularly, but it was hard to have her so far away. Then she got her dream job - in California. She moved from one coast to the other. We made travel a priority.
When Alex moved out, it was more similar to your toddler getting his own place. For the first time since we had children, we could come and go with ease. The freedom was nice, to be honest, but it felt strange.
The whole routine of our day changed. John and I had only ourselves to get ready in the morning. Not having Alex to make breakfast for and help get ready in the morning freed up an hour. We no longer had to worry about unexpected things coming up at the end of the work day that would delay us in getting home. When Alex still lived with us, we had to be sure to be home when his ride arrived bringing him home from his adult day service program.
When Alex got sick, obviously that changed everything. For the first six months of his treatment, everyone's schedule revolved around Alex's chemo. Jess flew home several times. John and I worked as much as possible. Cancer dominated everything. Alex continued to live at his group home, but he spent the night before every chemo treatment and procedure. We also tried to fit in visits that did not include cancer treatments.
Little did we know, that first six months was only the dress rehearsal.
When we learned that the chemo didn't work and more treatment was required, we could no longer try and pretend to keep the rest of our lives going.
We had a month where we thought Alex was better. We were sure his follow up PET scan would show his cancer was in remission.
During that month, Jessica was offered a job in Wisconsin. The offer was unexpected. On the one hand, the timing was not great because they had just bought a house in California and Rusty had started a new job. Jessica loved the job she had. But they had come to realize that California was not going to be their permanent home. They were beginning to think about making a change at some point, a few years down the road. Here was an unexpected opportunity with another dream job for Jessica. Rusty has the ability to work from home and he was more than willing to give up the soul crushing commute he had in California.
Jess accepted her job offer, Rusty found a new position, and they made plans to move to Wisconsin. They would stay with us while their California house sold and they looked for a new place to live.
We were beyond thrilled. Our family was due for good news, and this was fantastic news.
Then we got the news that Alex still had cancer.
Cancer really was at the center of everything this time. I took four months off work.
The three of us moved to Milwaukee for three weeks. In a year's time, Alex spent 30 nights in the hospital and either John or I or both of us was with him every night. One or both of us was with him nearly every minute of every hospital stay. We also had a week of outpatient procedures in Milwaukee that required a hotel stay.
We had plenty of togetherness.
Jess and Rusty stayed with us for two months. They moved into their new home about two weeks before John, Alex, and I left for Milwaukee for the transplant.
We got back from Milwaukee, and Alex spent three more weeks at home with us.
Now Alex is back at his group home. I've been back at school for three weeks. In many ways, it feels like I was never gone.
We're going through the motions of our old routine.
It just feels different.
We know that Alex is at high risk for relapse. That specter is there, but we try to not dwell on the possibility.
I feel like I'm adjusting to the kids being gone, all over again. It does feel good. Jessica and Rusty are settling into married life, a new home, new jobs, and a new puppy. Alex is back at his part time job and living at his group home.
John and I are back at work, going to flying club meetings, and going flying. This past weekend, we flew to NYC for my birthday. It's a trip we planned and cancelled twice during Alex's illness. We haven't been away in a long time. We're trying to figure out our time together and to not have that feeling like we should be doing something else.
We're learning what it's like to have our daughter and son-in-law living only 35 minutes away, instead of 2,200 miles away.
Alex still has treatment, but only once every three weeks. Our visits no longer have to be dominated by medical procedures. He still has them, but they are not dominating our lives.
Today is a good day. I'm grateful for the good days. It's been a long time coming.
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