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.

Saturday, May 23, 2015

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.

Sunday, May 10, 2015

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.