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.