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

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.

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.  

  

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.  

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.  

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.  

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.

Alisa--such a life to describe in so few words

I'm sure most people who look at this blog know that my little sister, Alisa, passed away this week.   She was suffering so much that in there was a bit of relief mixed in with a deep sadness to say goodbye.   I struggle with the question of why she had to get cancer at all.  And why couldn't she have been cured of it? Watching her slip away, I felt like I was facing my worst fear for my own child and in one of my very favorite people.   The past days and weeks have been difficult, but I think the hardest part is ahead of me.  Holidays and family events and most of all the every day when I feel like calling her and chatting about whatever.  She has been a big part of my life and I will miss her dearly.

I was asked to give part of her life sketch at her funeral.  Many of you were there, but I'm posting it here for those of you who couldn't make it.  She was a remarkable person and these few words don't even begin to do her great life justice.   Luckily, there were other great talks given yesterday and together, I think we captured her essence.  

Life sketch:  Alisa's motherhood years

As I was preparing to speak today, I asked many members of our family to describe Alisa in three words. Some of them were: profound, bold, beautiful, independent, hard working, creative, loving and fun. Luke added "kind", Sam said "awesome" and James: "Best. Mom. Ever." But I found that there were some traits that really stood out. Her determination, her ability to see and create beauty and her compassion.

Alisa was determined. When she was young, she decided to become a nurse and she made it happen. After high school, she worked as a CNA to support herself through nursing school at Ricks College. She got her RN and started working as a full time nurse. She married Josh Linton. She started school at BYU. Six months after her first son, James, was born, she graduated from BYU with a bachelors in public health. She accomplished all this in just four years after graduating from high school. Every year since becoming a registered nurse, she has renewed her nursing license and when she died, her license was current.

Alisa had an ability to create beauty around her. Not long after James was born, she got her first digital camera. She began taking pictures for friends and family. When Sam was born, she quit her nursing job and started to grow her photography business. She and Josh built a house in Lehi. She loved to design, decorate and garden. She loved to cook and throw parties. The new house was the perfect blank slate for her talents.

Alisa has always made friends easily, and that was true of her new ward and neighborhood. She loved serving in her ward--teaching Primary or Relief Society and especially her time with the Young Women. Luke was born and she fell in love a fourth time. When Luke was just barely two years old, she got the devastating news that she had metastatic melanoma.

Luckily for all her fans, Alisa started to blog. On her first blog, she described herself this way:

"BARELY thirty. Wife and mother of three. Trying to let cancer change but not define me."

The cancer did work a change in her. The unimportant and negative began to fall away and she filled that place with meaning and joy. The determined, artistic, compassionate Alisa became more bold and more attuned to beauty. She used her experience with hardship to bless others around her.

The determination that characterized Alisa was so evident with her cancer fight. She researched every treatment and pestered doctors and insurance companies if needed until she could get the treatment she'd chosen. She was determined that she would try everything she could. Her hard work combined with some help from God made that dream come true. She didn't want to leave this world with even one stone unturned. She sent a clear message to Josh and her boys that she was willing to do everything in her power to stick around for them.

Alisa's eye for beauty was also enhanced after she was diagnosed with cancer. The world just seemed brighter to her once she realized what a gift life is. She stopped taking pictures professionally to spend more time with her kids, but she shared her new found perspective poetically through her writing. And she continued to create beauty wherever she was. She loved to travel and wanted to see and share with her family all the beautiful places in the world.

Her experience with cancer opened her eyes to the suffering of others and she loved to help and cheer others. This became very personal to me when my son was diagnosed with cancer. She coached me through a very difficult time and organized all kinds of help I could ever think of needing. She decorated my house while we were on a vacation that she insisted we take. She has helped me through all our cancer years, but that first week was a critical time and the amazing thing is that she had just found that her cancer had returned. She didn't tell the family until the day Steven started chemotherapy.

Alisa's cancer helped her see how much she loved being a mother. She decided that if her time were limited with her kids, she would do everything she could to influence them for good while she could. And if her time were extended? Then even better. She often told me that her kids were her biggest investment. She wanted them to be happy and successful. She wanted them to exercise and play instruments and read and be kind. She hoped they would try everything: swimming, skiing, sports and karate. She wanted them to eat good breakfasts and to have good friends. She warned against the evils of too much screen time and often felt to remind her kids (and all other kids around) to "come outside." She loved to attend their recitals and ball games and to take them on adventures around town or in the mountains.

Some of my favorite posts on her blog are from Mother's Day. I would like to read a part of her post in 2012.

"Have I told you I love being a mother? Why? Because as confused as I seem about life and purposes, . . . when you are diagnosed with a life threatening illness. . ., you realize what you want out of life. In life. Because of life. You know what you want by the time you die. You figure it out quickly in the face of death.

There are so many things I don't really want any more. I don't really want to care about appearances, or money, or where I'm going to be in 10 years, or how much I weigh, or what kind of car I drive, . . . . I would take all of these things, don't get me wrong. But who really cares when all is said and done? Pretty sure I'm not going to spend too much time worrying about that stuff.

I just want to give. I want to live for Josh. And James. And Sam. And Luke.

It's a Christ-like love. Giving, asking nothing in return. That is what I want. I want to give. I want to love. That is why I want to live.

I bet if you look deep enough you will find that same desire.

Right now I talk about being a mother, . . .but everyone has their own purpose, and people to serve.

Sometimes you might ask as a mother, Why? Why am I doing this? . . . Because you need to. Because you can. And I'm guessing, because you want to. Because once you were once sparked with the old magic. Maybe that first time you were put into your own mother's arms the incredible love that makes the world keep going sparked you with the same unselfish desires and instincts.

Isn't it wonderful? To have, . . someone who (deep deep down) loves you always. Someone who would do anything for you. Although maybe she can't. A love so pure and simple, deep and strong, that it never changes. To have someone who will be with you no matter what. If you are born imperfect, you are loved perfectly. If you become imperfect along the way, if you do not live up to your mother's dreams, you are still what she dreams about and concerns herself with. She doesn't give up on you. Cheers you on even if you are last in the race. Especially if you are last.

Even if...even if we can't be in the 'same spot.' I know my love will stay with my boys.

I know because I have felt love's scope these last couple months. And it's longer than time, and deeper than space.

It's magic I'm only beginning to understand. But not one bit afraid to use."

Alisa used her magic called love, and it will stay with her boys forever. My prayer today is that we will share her desire to give and to love as Christ did. 

You can read the full text of the Mother's day post here.  Also, her obituary here or here on her blog.

Mother's day can be hard for people and for so many reasons.  Today was one of those hard ones for me, because I couldn't get my sister, Alisa, off my mind.

I know I haven't been updating much here on my blog lately.  I've been distracted and besides, she updates hers fairly regularly.  If you have followed her story, you know that since January, things have not been easy for her.  Her cancer is back in force.  Right now she's struggling with the decision to go on hospice.

It's been a rough time for me.  She is such a huge part of my life--as she was born 17 months after me, I have no memory of life without her.  And most childhood memories include her.  And we've talked on the phone almost every day since we started having kids.  She coached me through Steven's cancer.  I owe so much of who I am to her and her influence.

I have been so touched by all the people who have reached out to help her and to help me.  Yesterday I sent an email to our family and some friends about a group gift for her and within the hour we had more than enough to cover the gift and within the day, it exceeded any expectation.  Thanks to all who helped--it will be a blessing to them.

Alisa is one of my favorite examples of motherhood and I think of her often on those days when I want to throw in the towel.  She shows me how to live amidst hard times and how to savor the moments. She teaches me to expect a lot from my kids and to make sure they feel unconditionally loved.  She has been an amazing example of faith and hope.  I love her dearly and from the times we were playing with dolls as kids to now as we raise teenagers, I cherish her role in my growth as a mom.

I hope that you will hug your kids a little tighter tonight and say a prayer for my sister.  She's in a rough place and she will be holding onto life as tight as she can because more than anything, she wants to be here for her kids.

A picture of me, my sisters and my mom.  This was taken just over a week ago on the eve of my youngest sister's wedding.  

Ski camp

As if I needed one more reason to love Shriner's Hospital...

Last week, Steven was able to go to Shriner's UnLimbited camp at the Park City National Disability Center. Here is a link to a news story about the week. And this one at Deseret News. And another at Park Record with lots of good pictures of Steven. (He's in all black with some blue on his coat.)

He came home so excited that he had learned to ski.   He also just had a blast with the other kids that were at the camp.  Several of the kids were cancer survivors as well, and I could tell that he really just loved getting to know some kids that knew about some of the stuff he deals with.

I was nervous to send him off for the week, but seeing him so happy with his new skill and so excited about the friends he's met, I am really happy he got to go.

Here is a picture of him from the KSL story.  He's with Drew, who is also a rotationplasty kid

Winning the cancer fight

It's been an extremely rough couple of weeks watching Alisa go through this awful cancer stuff.  There have been so many times when she just doesn't seem like quite herself--the pain and medication is just too much.  But even when she's a little crazy, I love to be around her because she is still there, only almost like she is behind some cloud.  It's hard to describe.

Yesterday, though, she called me and it was just like the old Alisa saying "Hey, what are you doing?"  It was just an absolute breath of fresh air.  When we talked, it was as if the past few weeks were just a dream in the past and she was all back.  I went up to the hospital and visited with her.  She was all herself, but there was a sadness that I haven't seen much in my very hopeful, fierce cancer-fighting sister.  As we talked, I felt like it was just dawning on her that she might not win this fight after all.

I can't describe how hard that is on so many levels.   There is the selfish part of me that realizes how lost I would be without her and what a gaping hole would be left in my heart.  But the real sadness comes from seeing her suffer.  It's hard to see her in so much pain, and so when I say suffer, I do include the physical part.  But even more than that, it is so hard to see how sad she is to think of leaving her family.  She is proving through every decision that she is willing to do whatever is in her power to stay alive.

I guess that is where we come to the hardest thing for me.   And it is something I've grappled with through all these recent trials in my life.  It is this powerless feeling in the face of death and disease.  That even with all the medical advances we've made, we are still human and we are subject to death.   I've talked before about how Steven's cancer really burst my "bad things only happen to others" bubble, but the more I go through, the more I see that our lives are in God's hands.  I won't say we are powerless to do anything, because a quick look at Alisa's cancer fight proves otherwise.  But ultimately, no matter how much we would love to live, we aren't immortal (yet ;)).  And that is really hard for me to comes to term with.

Really, the only way I can is to trust that God's hands are good and that His vision is perfect.  It's an easy phrase to write or say, but really trusting Him when things look so bleak is very different.  When I lost Daniel, at some point, or in waves, there was such a feeling of resignation to God's will.  Also a feeling that fighting something that had already happened was futile and that what was done was done.  Every emotion in between came along with that--anger, confusion, deep sadness, guilt, hope, love, comfort, peace--all of it.

I don't know the point of my post--certainly I'm not saying Alisa should be resigned to death.  I feel like her fighting spirit will be the thing that will save her, frankly, already has.  I guess I'm just saying that I wish that her will to live were enough to get her better.  Doesn't it only seem fair that those that fight the hardest should win?  I think so.

But I think that God's version of winning has little to do with surviving mortality.  And if we go by our understanding of His standards, then there is no doubt Alisa has already won.

This is me, Alisa and our brother, Jon.  The three of us were born within three years of each other.  We took this picture on Alisa's birthday and even though the light is doing weird things on my face, I just love it.

3 years post treatment

Getting scans near your birthday is a bit risky, but I scheduled Steven's for today without thinking.  Thankfully, they looked good, and we are thrilled.  Each one he passes, I just feel a bit more secure that the cancer is gone for good.  It's true and it's not true--I watched cancer sneak up on my little sister just when she was done with scans and done with worry.   But still, even if we are biding time, at the very least we have six more glorious months without cancer fear.

That is, cancer fear for Steven.  All week I've been a nervous wreck.  Alisa had scans also this week and learned that her cancer is growing despite the treatment she has been taking.  It is a devastating blow and the combination of scanxiety for both of them and bad news for her has been rough.  But nothing compared to what she is going through.

Yikes.  Cancer, I hate it.  For me it inspires fear like almost nothing else can.  And sometimes the fear is crippling. I think it is part of my challenge to go forward and overcome this fear and go forward with faith that things will somehow work out.  That is a whole lot easier to write than to do.

Goodbye 2014

Christmas and the start of a new year always leave me reflecting on the old year.  I wonder if we really progressed.  Did we meet any goals?  Are we better off now than a year ago?   I haven't been updating to this blog much and so I decided to share some thoughts and things from the past year here.

We started off this year with a mini disaster.  It was our first Sunday with 9am church.  I was teaching that day and was distracted.  I put a pot of dry beans on the stove to pre-boil and soak them.  I never turned it off and went to church for three hours.  Longer, actually, because Steven had an interview with our bishop to get the Aaronic priesthood.  We came home to a house full of smoke.  Luckily, there was no fire, but he smoke damage gave us a run for our money.  It was months until the smell finally left (if it even has).  Overwhelming!

After devoting weekends to smoke remedy, I begged Rob to redo our basement bathroom.  He obliged and spent 4 months of Saturdays on the project.  Here are some before and after pictures.  It wasn't functional as a shower before the project, and we only had one bathtub/shower.  This one is in the basement.  I'm sure someday someone will wonder at the handicap accessibility in a basement bathroom, but it has been really nice for Steven, who sleeps in the basement.  It's made a huge difference and Rob learned a lot in the process (mainly that he should say no when I ask [tell] him to do a project and also not to buy an old house).

The rest of the year is harder to put my finger on.   So many good things happened, but hard things too.  To name a few, Steven got braces, my youngest brother got married, my youngest sister got home from her mission in Spain, Steven started Jr. high, Laura started first grade, I started my first year as a stay-at-home mom without any kids during the day.  Addie turned eight and was baptized.

One hard thing that has happened and is happening is that my sister, Alisa, has had her cancer come back and tried an out of state treatment and had relapses and all kinds of cancer problems and miracles.   But she is hanging in there and teaches me every day about moving forward despite trials (and because of trials.)  And I am learning all over again about hope.  

Among the noteworthy things, there have been lots of the normal stuff to fill up all the time in between:  homework, appointments, practices, school, scouts,  the occasional sibling fight, projects, yard work, dog walks, work, grocery shopping, meals, and the ever present house work.  Sometimes it's hard to find importance in these things that seem kind of tedious, but together they make up the year, and this year will be filled with stuff like that and together they will form our lives.  

And in the meantime, we are growing up too fast.  This year I want to work harder on enjoying the everyday and making more memorable moments.  The older my kids get, the more I realize just how good I had it when they were small.  And that makes me  think that someday I'll think I had it so good!  Why didn't I enjoy it more?  So here's to 2015 and joy!  I hope it for all us, I really do.

A favorite Bible verse

My Aunt Kathy is kind of a marvel.  One of her many talents is that she always seems to know just what to say to lift you up.

A while back, she pointed me to a scripture that I hadn't noticed before.  Job 23:8-10, 17:

8 Behold, I go forward, but he is not there; and backward, but I cannot perceive him:
9 On the left hand, where he doth work, but I cannot behold him:he hideth himself on the right hand, that I cannot see him:
10 But he knoweth the way that I take: when he hath tried me,I shall come forth as gold.
17 Because I was not cut off before the darkness, neither hath he covered the darkness from my face.

I read chapter 23 in Job over and over a few months after I lost Daniel.  I know that I cannot compare myself to Job--for one, my trials are few compared to his, nor is my character so good as his.  But still, I found quite a bit of comfort in the book.

Six months or so following his death, I found myself kind of spiritually dead.  Right after he died, I was buoyed up by the spirit and strengthened so much from the comforter.  But as life went along, it was getting harder for me to take care of my family and I felt alone. (As a sidenote, at this point I went and saw a grief counselor.  She told me that people have the hardest time in the stage of grief that takes place between about 2-8 months after a loss.)

Verse 8 seemed to fit--I did try, but I felt like I couldn't find God, that I just didn't have the strength to look.  But then verse 10 is what I tried to focus on:  "He knoweth the way that I take."  That was it--maybe He was hard for me to find in my state of mind, but He knew where I was.   I took hold of that thought and it has pulled me through a very dark time.

It was later that I noticed verse 17.   In the previous verses he talks about being refined as gold and having his heart softened.  And he has those things because he had to go through that darkness--the Lord did not hide it from him.

I've got a long ways until I "come forth as gold."   I still wish that the darkness could be "hidden."  I wish I were better at seeing the hand of God.  But still, I trust that He is there for me.   Never far from my mind is the thought, "He knoweth the way that I take."  And I know that I am not a special exception--He loves all of us and knows our hearts.

A few pictures from this summer

At the aquarium--a shot of the back of his leg

The bridge at the aquarium again

At Lake Mary

Bear Lake

?

Good scans

Sometimes I wonder if I should even update the blog with news of good scans.  You know I would if they were bad, right?  I often think about when Steven was first diagnosed with cancer.  I searched the internet for everything I could find about osteosarcoma, including blogs.  The only blogs I found were about kids who had lost their battle.  It was unnerving.  I promised myself that I would keep blogging, especially if Steven did well and survived.

It is hard to keep up a blog, and in the years since he finished treatment, I have gotten less and less faithful.  I've said before that in some ways, I just want to move on.   But I think about people searching the web, looking for hope after a recent diagnosis and that is why I keep it going, even if it is sporadic.

Having said that, Steven's scans looked good this week.  This was the first 6 month interval and it has been so nice to not have to worry so often.  This week Steven and Rob went to youth conference  and went river rafting.  They had a blast.  He came home oblivious that he had scans.  I also had a busy week and didn't think about them much.  Even the night before, I still hadn't been hit with that all too familiar scanxiety that I normally have.  I started to worry--what if something bad happens and I haven't been worried about it?  (Crazy, I know!)  But no matter how hard I tried to worry, I just couldn't.  Even the morning of, I ate a full breakfast and we headed over to the hospital.

I'm so glad they were good, and I feel like God spared me some worry this time.  We've had our share of worries about Alisa, whose cancer is slowly spreading.  She is facing some hard choices about treatment now.  We continue to hope and pray for her--she is a living miracle and I have a feeling that more miracles are around the corner for her.

Steven rides again

On Saturday, Steven, Andrew and I participated in the Huntsman 140, a bike ride to fund raise for the Huntsman Center.   We tagged along with my sister, Alisa, and her husband's awesome parents who have given so passionately to this cause.    Alisa's father-in-law has been riding with a handful of people from Reno, Nevada, to the Huntsman center in Salt Lake--over 660 miles.  His dedication made me feel like a bit of a poser.  We did the final mile of the ride.  Yes, only a mile!  In fact, we were the only people who did only a mile--the other 700 riders did at least 25, 50, 75, 140  and even 660 miles.   But even so, this was  a big thing for us, and here is why.

You must know that Steven has been riding bikes from a very young age.  He practically taught himself.  Our first home had a large unfinished basement and he rode bikes down there whenever he could.   Enter cancer--no more biking.  He had to lie low before his surgery to avoid breaking the bones (not to mention he felt terrible.)  Then the surgery changed everything and even once he was up and walking, riding a bike felt really difficult because he didn't have the range of motion in his new "knee" like he did in a real one.

We were told he would be able to ride a bike, but for all we tried, it felt really hard.  He isn't much of a quitter normally, but every time we tried the bike thing, he gave up in frustration.   Some friends we met through this cancer experience were kind enough to give us the right side of a crank shorter for a bike pedal (Garrison lost his left knee).   But we've had that for a few years and have put it on several bikes, still with no luck.

Last year at the Huntsman 140, I determined to do all I could to get Steven riding to be able to participate this year.   But the year went on, he lacked motivation, and I think I was just worried that he wouldn't be able to do it.  Somehow it seemed easier to live with the hope that he could than the knowledge that he couldn't.  So I didn't try.  (I know--awesome faith here :)).  This spring, I was looking at my Facebook feed one day and I saw that Tim was up on his bike.  (Tim is Steven's surgery "twin"--they had the same doctor and surgery within a week of each other.)   I started to hope that it was possible.   

I had already talked to Steven's prosthetist and therapist at Shriners, and both had been really supportive of getting Steven riding.  I had an appointment at Shriners set up and I decided to get a bike for Steven before then so I could bring it to the appointment and have them help us figure it all out.  We went out shopping for the bike.  Andrew was as excited as Steven.  I had never bought either of them a new bike.  I didn't buy one  for Drew yet because I was worried that Steven wouldn't be able to ride and I'd have an extra bike sitting around.  So we took it home and Andrew rode it around and Steven looked on longingly.   The next day I took it and all the parts I had to Shriners.  And then I left it there for them to modify.

A few weeks later at our next appointment, both Eric and Sonya, his prosthetist and therapist, helped get the bike adjusted and taught him how to use the gears and held up the bike to help him balance.  They added a pedal with a strap to keep his foot in.   After that, it didn't take long at all until he was off.  I couldn't help crying out of gratitude for all the help we'd had and out of joy that he would get to ride a bike.  And even better was his sheer excitement that he could ride a bike and that he had overcome this seemingly impossible thing.  

And that is why only one mile still seems like a very important mile to me.  He had only been riding for two weeks and yet he was up ahead of me the whole time (okay, that wasn't too hard to do), but still, he led the way.  And next year he will ride longer, I'm sure of that.  Now Andrew has a new bike, too, and seeing the two of them ride around the neighborhood is such a happy sight for me.  

Rich Linton in his Reno Riders jersey, Steven and Alisa in their survivor jersys--the rest of us in back.  

Three years ago today. . .

We were headed to California.  Steven had just had a biopsy of his leg and a confirmed diagnosis of osteosarcoma.  I had never felt such acute anxiety.  I practically hadn't slept or eaten in two days.

What a difference the years have made.  It is weird to look back at that experience and feel like a bit of an outsider, when it shaped us so much into who we are today.  I feel like I have forgotten so much, maybe on purpose.

Today I found out that my cousin's boy has leukemia.  I can't get him out of my mind.  When I told Steven, his face went white, he was horrified.   I may have mentioned that just as school was starting, a boy at Steven's school, in his grade, was diagnosed with osteosarcoma.  These instances are hitting too close to home, and while I should be some sort of big help, I feel like my hands are tied by the very thing that should make me the most helpful.

It's weird.  There is a reason I don't write much anymore--it's partly because I want to forget about cancer.  But even when I try, it is right there--hurting other people.  Still hurting me, really, because I still worry about it.  Sure, we live on and we don't talk about it much.  We hope and dream all the time about our futures, but for me there is always a dread in the back of my mind that it will come back.

I remember reading books in the hospital about parents of cancer patients.  One thing said that people move on from cancer in different ways--some become activists, others use their knowledge to support other families--I've seen these types of parents, it's amazing to me.  Maybe it is so amazing because somehow I've become the parent who slipped into the shadow and tries to forget about cancer.  I didn't mean to be that way, but I guess after I lost my baby, I just didn't have much in me left to give.  I still don't.

For years I've wanted to write a post about how to help people when they have cancer or some other big deal thing.  When the boy at Steven's school got diagnosed, I was determined to do it.  Now that my little cousin has cancer, I'm once again resolved.  Tonight I don't have it in me to go into detail, but I will say this--just do something.  Each action we take is a way to show love and support, and even if the person doesn't acknowledge your words or deed with a thank you note, it won't go unnoticed.   I could not have endured the past three years without the love and support of those around me.