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.
Sunday, December 27, 2015
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.
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.
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