Thursday, August 20, 2015

Don't be mad

I'm feeling completely overwhelmed tonight.   I was lump-like on the couch looking at the mess surrounding me and I felt like I needed to escape to stay sane.   I headed to the cemetery and  walked around in the twilight,  feeling like a miserable failure.  I was angry at myself that I couldn't muster more energy, I heard Alisa's voice tell me, "Don't be mad at yourself, Sonja." 

It struck me again what a gift her last words to me were.  I don't think I've written down yet the story of her last words to me.  I say "last words" a little loosely, as we had a conversation about many things on that last day she was conscious.  She asked me to write her obituary and to help Josh pick a headstone.  She told me that she wanted a plain headstone with nothing on it "Not even my name."  She was not entirely herself that day and some of the things she said she weren't quite right.

Her friend, Jennie, had texted me and told me that I should come see Alisa that day, that she was slipping away fast.  She said that she had been with her for a couple of hours and only a few things she said were really appropriate for the context.  So I made arrangements and went down.  I'm so glad I did.

As I drove, I considered what I wanted to tell her.  Josh was in the room and he got to hear it too.  I wanted her to know how much she has meant to me in my life and how much I truly love her.  I told her so and told her how sad I was that it had taken cancer for me to stop being jealous of her.   I had written her a long letter about it, thanking her for loving me no matter what and for helping me with so much throughout my life.  After I started telling her some of these things in the same spirit as the letter, she told me she had read it.   I can't remember what else she said, but then she said, "Sonja, don't be mad at yourself." Then in a bossy tone, "Josh, don't let Sonja be mad at herself."  Josh and I both laughed and Josh assured her that he wouldn't.  It seemed like a strange comment in the context--a bit of the delirium of someone whose mind was failing.

But it stayed in my mind and I wondered about it as I drove home that night.  The next day I was going down again and was picking up my sister, Kirsten, so she could go see Alisa.  I was late getting out the door and knew I'd have to almost turn right back around to pick up kids from school.  As I was backing out of my driveway, I was cursing my perpetual tardiness and I heard myself say, "I'm so mad at myself!"  As I said it, I realized that it is a phrase that often passes through my mind.  And then just as strong, I heard Alisa's command, "Sonja, don't be mad at yourself."

Many times in the past few months, I've caught myself getting angry at my weaknesses.  And many times I hear her last advice to me.  I can't tell you what a powerful gift they are.  She knew me so well--maybe better than I know myself.   By the end of her life, Alisa had such a beautiful and merciful life perspective.  I think she understood that negativity was wasted energy and time and just did her best and left it at that.   And so with her words and her example, I plan to remember that just like everyone else, I am doing my best.   And while I can certainly strive for better, being angry at myself wont help.

My beautiful sister on her 35th birthday

Tuesday, August 11, 2015

A trip to Lava Hot Springs

Several years back, Alisa had this fun idea to have an "originals" day trip to Lava Hot Springs.  So my siblings and parents (without spouses or kids) all met in Idaho.  It was so much fun.  I have so many siblings and we are spread out enough that our parents used to take us on separate vacations.  We think that this was the first and only vacation that was with all of us and only us.  

It was such a fun memory.  Alisa and I often talked about doing it again with our kids some summer day.  But it seemed like there was always something else (like cancer treatments) holding us back.  

One day in July I suddenly had the thought that we should make that trip happen for Alisa and her boys.  I almost felt like she had whispered the idea in my ear.  So I set a date and made plans.  And we did it!  It was a rainy day, but the hot springs make all the water warmer so it was really fun and not crowded at all.  We all pushed past some fears and were brave like she was.  Josh jumped off all the platforms and I went down the big slides.  Luke braved the river.  It was just a great thing.  I felt like she was bringing us together. 

Here are some pictures from both trips.

The ride up--not a flattering picture of me, but I can't help but smile when I see it anyway.
All of us
She was a brave one!

Steven and James down the river.

Out of fifteen pictures of us on the river, this is the only one I don't look absolutely terrified in!  And you can't see it, but we have Steven's leg in the middle of our tube.
Tubing the river is my favorite thing there--and it's the only thing we took pictures of.  Don't miss it if you go to Lava.

Sunday, July 19, 2015

2 months

It's been two months today since Alisa's death.  I still have moments where the reality of it hits me hard.  The other day I felt I had a glimpse of many decades left of my life, all without her.  It took my breath away.  But mostly I can move forward (slowly) and go on with life.  I know I need to spend more time processing and grieving her loss, but I find that life has a way of pulling me along in it's swift current.

I've been wanted to post a few pictures from the graveside of Alisa's funeral.  I know we didn't take enough pictures--she was the picture person in the family, and I know we didn't fully capture the full depth of loss or the love that so many showed for her and her family.  I know there are many of you who weren't able to be at the funeral and more that weren't at the graveside service, so here are a few pictures to help you visualize that day and to remember her.  


Sunday, July 12, 2015

Much needed good news

Steven had scans on Friday and thankfully, they were normal.  As you can see from the picture, the new scanner has a pirate themed makeover.  As we sat there listening to the machine tell Steven when to breath and when to stop breathing,  I couldn't help but think of an amusement park ride and how much scarier this is than anything you could strap me into there.  

But in all seriousness, the weeks leading up to Friday have been tough.  I've known anxiety in the past, but this was getting a little out of hand.  If I wasn't careful, my mind would project a dismal future where Steven and I both had cancer, Rob lost his job, we went bankrupt, divorced and I was in a straight jacket in an institution.  Once Rob told me that thoughts like that were the opposite of praying.  I've thought a lot about that and so I started praying instead.

The night before the scans, I knelt in prayer and as I was telling God that I really missed Alisa and how much I needed to talk to her about my fears, I was filled with a peace and distinct feeling that she would be with me at the hospital the next day.   I slept well and woke up the next morning relatively calm (at least compared to the rest of the last week!).  I was able to calmly go to all the appointments and was so happy and relieved to hear the good news that his lungs look clear and his blood work is normal.    And truly I felt like Alisa was there to celebrate with me. 

Cancer fear was something that she totally understood and she was the person I would call as scans approached and anxiety would creep into my mind.  She could always talk me down from my crazy place.   Someone asked me what her trick was, and I'm not sure if I can put a finger on it.  She knew all the relevant statistics and had a good grasp of the reality of cancer.  But at the same time, she saw the hope in the percentage of people of who survived or responded to treatment.  She had lots of hope for the future of cancer research and always felt like if she just had more time, they would figure out a cure.  In Steven's case, she saw only hope because his prognosis is so much better than hers was.  Plus, she felt sure that if his did come back, the cure was just around the corner for him.  I think her trick was just that she understood and acknowledged my fears, but then quickly changed the focus of our conversations to all the reasons to hope.

There is a whole lot of hope for Steven.   He has been out of treatment now for 3 1/2 years and the doctors feel like he is past the time where the cancer is most likely to come back.  They will do a scan in December and if all looks good, we will discuss moving to annual chest xrays instead of the scans.   Xrays are less detailed, but they also emit less radiation.   Moving to an xray is just another vote of confidence that the cancer is gone for good.

By the way, Steven is doing really well.  We've spent a lot of time this summer in appointments with doctors, orthodontists, audiologists, and prosthetists.   They've made him a new leg, but that took two tries, because the first didn't fit right.  He's still kind of figuring out the leg he has--with some adjustments, it is better, but there are still moments when his walk isn't quite right.  He and his friend started a small lawn mowing business.  He is spending lots of time with my parents and the Linton boys.  

Here is a little video clip of Steven at the swimming pool.  This wasn't his best flip, but it was the only one I captured.  My friend thought I should put it on the blog--he certainly gets a lot of interested looks when we are at the pool.  

Monday, June 15, 2015

Take a picture of your life before it changes

I've been missing Alisa fiercely the past few days.  When I get very busy, the feeling might subside a bit, but when I slow down, it hits me so hard.  Josh posted this slideshow that my sisters made for her viewing.  I watched it for the first time tonight and can hardly stand that she is gone.  I still had so much to tell her and she had so much to teach me.  

If you watch the video, one thing you'll notice is how many lovely pictures she has.  She has often told me to take more pictures, and even though I'm self conscious about pictures of myself, she encouraged me to take more.  If I said I looked too old, she told me I would only get older.  And she was right--I'm so glad she took so many.  I look into her eyes in these pictures and remember her.  I'll try to do better.

Right now a picture of me wouldn't be so lovely.  The weight of grief shows in my eyes and shoulders.  I find myself reminding me to smile.  I don't know if my kids have heard my smiling voice for months.  Or is it years.  I have so far to go.  

This grief has been different for me than when I lost my baby.  Not so debilitating--I think because I saw it coming.  But not easier, just different.   With Daniel, the stages of grief seemed so textbook-ordered.  With Alisa's loss, it is jumbled up.  Today I felt so anxious, a fear almost.  And there is nothing I'm afraid of, and all I could come up with is grief.  

The trick will be finding joy again.  And not taking life for granted.  I love how she lived that way, up until the very end.  And I love that her pictures and blog posts are here to remind me.  

Sunday, May 31, 2015

More to the story

In the life sketch I wrote for Alisa's funeral, I mentioned that she was a huge help to our family when Steven first got diagnosed with cancer.  I may have also posted some of these stories, but as I was talking to some of my cousins at the funeral, it seemed they hadn't heard them, and so I thought I'd better write it out all together.

Steven was diagnosed with bone cancer on February 16,  2011.  He had been limping and one evening, I noticed his knee was swollen.  The next morning I made an appointment with the pediatrician and picked Steven up from school.  I never in a million years expected to hear he had cancer.  An xray revealed a bone tumor and the doctor broke the news to me gently.  I sat in the waiting room while the office set up appointments for us at the children's hospital.  I was stunned and at this point didn't realize it was cancer.  I did the only thing I could think of, I texted Alisa.  "Steven has a bone tumor.  We are going up to the hospital."  

Alisa had found a tumor of her own just a week or two before this.  At this point, only Josh, me and my brother, Jon, knew about it.  She was waiting for results to see how far it had spread and what stage the cancer was at so she wouldn't worry too many people until it was clear what she was up against.  

I know she started googling bone cancers immediately.  She then hopped in the car and drove to my house. I needed to drop my little girls off there with my mom before our appointment at the hospital.  Sometime between the texts to Alisa and getting home, it dawned on my that we were up against cancer.   Alisa and my mom were waiting for me when I got home.  

She coached me in a few things to ask about.  She thought that I should look nicer for my appointment (side note--if I have ever dressed nicely, it is thanks to her).  We started to look through my meager clothing selection and when she wasn't satisfied, she decided to just trade me shirts, literally giving me the shirt off her back.  She had brought a book for Steven (he wrote an essay about that, I'll post it later), and gave him her smart phone so he would have something to keep his mind off the stress of the hospital.  

She watched my kids so my parents could come up to the hospital.  She cleaned my house and had the cousins and siblings make cards for Steven.  She got him balloons for his bedroom to welcome him home after the long day.

I remember my stomach sinking as my parents told Dr. Jones that their daughter had cancer once, but that she was free and clear.  I knew they were only days away from a heartbreak similar to what I was experiencing.  

The next day Steven went in for a biopsy and port placement surgery.  While he was in surgery, Alisa talked to me and insisted we take a vacation before he started chemo.  "He needs to see the ocean."  She talked my dad into giving us his frequent flier miles and we booked flights to California.  She even let James come along to help cheer up Steven.

Steven's surgery was on a Thursday, and we left on Saturday morning.  So on Friday, Alisa felt like I needed to invest some time on my image.  She took me to get my hair done and then took me shopping.  She bought me the most expensive pair of jeans I've ever owned and more clothes besides.  She would buy more things when I was in California so that I would be well prepared for lots of hospital and doctors visits in the future.

I don't know where this fits in, but around this time, Alisa got all my siblings to go in on a group gift of an Ipad.  At the time, our family owned no personal electronic devices or smart phones or gaming systems.  She thought he'd need something to do while he went through chemo.  It was a huge blessing through all of his treatments.

The vacation turned out to be exactly what I needed.  Until we left, I hadn't been able to eat or sleep.  I did both well on the trip.  She knew the power of a vacation--it is one of many lessons Alisa taught me.  I will forever be grateful for those memories and for that peace.

While we were on vacation, she organized a massive overhaul of my house.  We had been living in a 1200 square foot rental home since 2008.  We had been planning to start home shopping in the spring, but cancer would put that on hold.  I hadn't taken the time to decorate the house since I was always hoping to leave.  But she decided I would be more comfortable there if it were decorated and if used some IKEA magic to make the small space stretch.  She also thought I'd get better care from the home health nurses if my house looked well cared for.  She had my siblings all come over and install shelves and hang pictures.  She focused on the living room and on Steven's bedroom.  My parents bought a recliner for Steven.  All of this was waiting for us when we got home from California.  I felt so loved.

I was also amazed at how much she had accomplished.  I knew that she was so worried about what her own future held.  She got her results the day that Steven started chemo.  Her cancer had progressed to stage III, but luckily there was no cancer beyond her leg.  She would start a grueling process of decision making and waiting as we things were just getting going for Steven.

She came to see us in the hospital and took some beautiful pictures.  She told me I should start a blog.  She gave me all kinds of convincing reasons:  giving out accurate information to concerned family and friends, sharing my feelings, keeping a record of things I'd learned, and to help others going through similar trials.  I followed her advice and I'm so glad I did.

One of Alisa's pictures of us in the hospital.  I'm wearing a shirt she gave me and a hairstyle she paid for.

Alisa visit's Steven in the hospital during his first round of chemo.

So far, I have just written about the first week of Steven's diagnosis.  I could almost write a book about all the things she did for us.  She was incredible.  She organized a family gift of regular housekeeping so I wouldn't have to clean my toilet for nine months.  She helped watch my other kids and organized fun play dates to keep Steven cheered up.  She took pictures. She would come to visit us and bring the perfect treat or book for Steven.  She threw Steven a party to celebrate the end of chemo.  I could write a whole other post about her help after I lost my baby and she canceled her trip to stay, and how about the amazing group gift of a beautiful piano she made happen for me and for Steven.  More than anything, she was always the perfect person for me to pour out my heart and worries to--she knew what I was going through.

Alisa was a huge part of me surviving Steven's cancer diagnosis and treatment.  So often people wonder at how the two of us could have cancer affect us at about the same time.   I don't know the reasons, but if cancer was in the stars for us, I'm really glad that we could go through it together.  I'm glad that she was there for me and had learned the ropes.  I hope that somehow I understood her more because I had a taste of what she was going through.

One of the regrets she often expressed to me was that she wasn't able to do more for me.  It seems a silly concern as I list the amazing service she did.  I think each act of service was more meaningful because she did it in the midst of her own troubles.  And maybe the best thing of all was her example of looking outside of yourself in the middle of your problems.

Another visit later in the year.  She visited him countless times.

This was taken on the last day of Steven's chemotherapy.  

Wednesday, May 27, 2015

a few thoughts on grief

I wrote this back in January and am going to post it as I wrote it then.  Since then, I feel like I have things to add, plus it needs to be edited, but I don't have the energy for that right now, so you get it as is.  If any of you have insights from your life, I'd love to hear about them.

January 16, 2015
I was able to spend the evening with Alisa last night. She called me and asked if I would come and help her plan her funeral. I was honored and heartbroken and anxious to help, all these things. You can imagine the thoughts running through my mind.
We laughed and cried that night.  I look like I've got a decade of trouble on my mind and she is as gorgeous as ever, even as we talked about life going on after her death.  

But this morning I want to write about our conversation about grief. She is so worried about the pain that her death would cause to her family, her boys and Josh especially, but for everyone. We talked about grief a little and she asked me to write some things for her boys to know and for others to know as they help her boys. She wants me to write some of the things I've learned about grief, too. I figured I should do it now before I am too sad to do it.

Grief is a hard thing and it is very real. People talk about your heart breaking, and I think it is because there is a real physical pain that can only be described that way. Alisa wanted her boys to know that is is okay to be sad and that they should be sad. She doesn't want people to try and make it better for them with trite sayings like, "it will be okay" or "it is for the best." Because for a while it really won't be okay and even if in the end, this is a part of the plan, right now they will feel like having her here is the very best. I found it most helpful when people acknowledged my pain and simply said they were sorry.

It was really helpful for me to read about grief and to understand it better. There are so many resources, one I like is on a cancer website. I was going to write lots of that, but it has already been written so you can read it there.

One explanation of grief really helped me for some reason--it explained how our nervous system is truly healing from a loss of someone that was a real part of our emotional and physical world. Every time we think about that person, or are in a situation where our soul expects that person to be there, it is like rubbing an open wound, or walking on a broken leg. It hurts. But each time it happens, it might hurt a little less and eventually we can heal. There will always be a scar, but it won't always hurt as acutely as it does at first.

When I lost my baby, I experienced grief like I never had before. It was a difficult time, and honestly still is in some ways. On the other hand, in the days and weeks following his death, I was upheld by the spirit. Christ promises that He will not leave us comfortless and that "blessed are those that mourn: for they shall be comforted." I will tell you that this is so true, I felt very strongly that I was being held up and carried on. And I even felt like that although I had a very painful sadness, that my life was in God's hands and that Daniel was in God's hands and that everything really would be okay someday.  

Alisa told me about a blog post that kind of helped her. She couldn't remember who wrote it, but it has stuck with her. It was written by the surviving wife of a fellow cancer patient who suffered terribly at the end of his life. Someone told this to his kids. "What if I told you that your dad could be totally taken care of, with no pain, no troubles, no sorrow? Where they can rest and have peace. The only catch is that you won't be able to see them again in this life." Alisa has been in so much pain this last week that I think she sees it as a nobrainer that the kids would want their dad to have no pain. But I don't know that it is so simple. It is really hard to let go.

The other thing about this story is that really, the kids, the dad, Alisa, us....none of us really has the power to keep someone alive when it is their time to go. That is one of the hardest things about death for me. It truly is in God's hands. So even if her kids would rather have a suffering mom here than a painless mom in heaven, they really don't get to pick. Hopefully, we will be able to find some comfort that she is in a place devoid of suffering. I have to think that means that she won't be sad to be separated from her kids--that she will have a better understanding of God's plan and that time will be short until she is reunited with her kids.

Something we talked about was that love has no boundaries. She was giving what she called some "mini sermons." No matter where Alisa is, she will love her kids more than anyone can except for maybe Josh and certainly Heavenly Father. Her love will be here even when she is not. They will love her and she will love them right back. I honestly believe that her spirit will be nearby and be the very best of guardian angels for her boys.

If we lose Alisa, it will be very hard for all of us. Grief is physically exhausting and very difficult. It will take time, but there are things you can do to help heal. Spending time remembering her, writing down memories and feelings, crying, reading the scriptures, visiting her grave, drawing pictures, playing or listening to music, praying. All of those things will help. At first that is all you will want to do, but eventually, you will find that life goes on and you have to do other things too. And it will be hard to do things like homework and chores. Sometimes going to school or work will be a good way to go on with life and forget a little about the pain. Sometimes it may feel to painful to go and forget.

I want to tell her boys this: You will never forget your mom. You will always love her. Even as time goes on and you feel happy again, you won't forget her. She will want you to be happy, so don't hesitate to grab every ounce of happiness given you. That is how she lives her life.