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I’m starting to feel like we are settling into our new normal.  Realizing that my thoughts and plans for summer are gone and replaced by scheduling around chemo and the week after when Neil feels the worst.  Being able to plan and schedule things out a few months are gone and replaced with things like “chemo if his ANC and other lab work is acceptable”  I have lots of stickers for my planner that are now replaced with washi tape and a sharpie pen because they are removable/repositionable.  Heavy yard work is tabled for now, replaced by watering and mowing–weeds the same height are better than dirt, right?

I’m not comfortable here, and I’d leave it in a heartbeat if I could.  I can’t.  I’d have a garden, hopefully a few trees I was babying and trying to get some lawn going.  I’d be working the beginning of one week and the end of the next and planning fun stuff in the middle.  Tweaking my camping totes to take weekend trips far enough up the mountain to be cool.  I’d be picking up extra shifts at work to help cover our being short staffed and complaining when we were busy and I craved a break.

None of that is happening.

I have learned a few important things though.  Nice quotes with a pretty picture in the background don’t fix anything.  Some of them are entirely annoying.  With all respect to Walt Whitman, this one is the top of my frustration list.

My facing the sunshine doesn’t have a beautiful ocean view, meadows, rainbows or anything.  My facing the sun leaves me looking like this.  You can keep your meme thank you very much.

I’ve learned a lot about listening.  How to listen and how not to listen.  I’ve talked and written about listening before, but I feel like it’s been written on my heart now.  I had a friend stop everything she was doing on a busy day and say “Heather, I want you to know I’ve thought about you every day–can I ask how things are going?” and then she just listened.  In the hour before I’d been asked probably 10 times in various ways by people who really care but I was exhausted explaining and I totally suck at “things are just fine” type lies.  Sharing wasn’t tiring when someone was Listening instead of just hearing the words coming out of my mouth.
Hugs are okay.  Hugs can say more than words sometimes.  I’ve had hugs at work when there hasn’t been much time in passing a patient off to a higher level of care or when I’m trying to get from point a to point b quickly.  No time for words, but those hugs spoke volumes of care and support.  
It’s okay to not be okay, to not be strong, to breakdown in tears, to not always look at the bright side (see the sunburn above)  Pancreatic cancer sucks.  It’s heartbreaking to watch Neil be so tired and sick from chemo and there is nothing wrong with acknowledging that and spending some time validating how much things suck right now.  I choose to not live in that place, I get up and go about what needs to be done but I can’t pretend everything is “just f.i.n.e” and paint a smile on my face and even if I could I don’t want to.  Sometimes I cry myself to sleep, sometimes I lay awake all night praying to wake up from this nightmare, sometimes I pull the curtains so the room is dark and I sleep too long and it’s all okay.  Some days I even leave the dishes in the sink and stuff on the counter or have hot tamales and a Dr Pepper for dinner because I don’t want to cook.
Letting people help me has been hard.  Every time someone does something my head screams “No! you don’t need them to do that for you–you’ll find the time somewhere” but I’ve started letting people help and my heart grows each time.  Another hard to learn lesson from this is that I’m not in charge.  I don’t know what our life will be like this fall, next summer, next week.  I’ve worked hard to feel organized and like I have it all together and now I realize it was all an illusion.  I like to plan, my book of life (otherwise known as a Mormon Mom Planner) goes with me everywhere and if it’s not written down it doesn’t get done.  All of that control is gone and it’s been hard, I don’t like the chaotic unknown.
I’ve also learned I’m not the only one going through hard things.  I’ve had a couple of people talking about their hard things apologize because their hard things have an element of good in them.  Hard things are just hard.  There is no grand scale of hard things or rules about you can only complain to people who have smaller hard things than you.  I’m glad to listen to other people, to talk about normal things because no matter how certain I initially was that my world was coming to a screeching halt, life goes on.  Weather gets unbearably hot, people take vacations, buy new cars, or struggle with more “normal” things than cancer and I haven’t stopped wanting to be a part of people’s lives.  I want to hear the sad, happy and in between.
I have more to say and I know this post has been all over the place, but that’s okay too.
Bye for now,
Heather

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I don’t think there is anymore chance of me falling asleep tonight than there is a kid on Christmas eve.  Except instead of bringing fun, tomorrow is sucking away my normal.  Instead of stockings and toys Neil gets a port implanted into his chest.  Normal won’t ever be the same for us again.

Port placement at DRMC tomorrow at 7 am (I didn’t want Neil to have to be fasting all day, but 7 am? *yawn*) then chemo here at CCH Wednesday at 10 am, coming home with a fanny pack with chemo infusing until Friday.  Normal.  Diarrhea, nausea, fatigue.  All normal. Work scheduled around chemo and oncology appointments, totally normal.

I wanted to get normal family pictures taken, before our new normal invades our life and I got them back today (thanks for being flexible Jenelle!)

Nornal.

These pictures mean so much to me, it’s rare for everyone to be at the same place at the same time.  Our pictures from Provo was as close as it gets and someone was missing.  Besides pictures of Christmas pants, the last time we were together with everyone and there is photographic proof was our wedding.  I want decades of pictures, showing kids growing, new additions, people missing because of military service (even though it scares me), more wrinkles than I wish I had.  Crazy styles we thought were awesome, big hair we’ll make fun of some day — I loved the big hair.  I might not ever get all that.  For now I get our pre-wedding family pictures, wedding pictures, pictures in Provo and these, one of our last normal pictures before normal became a stranger I don’t like.

The reality of a pancreatic cancer diagnosis has been very real for me today, I don’t know if it’s conversations I’ve had work, Neil starting chemo this week, realizing I still need to go chemo shopping (it’s a real thing and much less fun than Christmas shopping) and want to get everything cleaned tomorrow, or reality starting to set in a little more.  I have a love/hate relationship with the uncertainty we are facing.  I mostly hate it.  I want guarantees and about the only guarantee we have is that things are about to get worse, like sitting on a hill watching black clouds roll in and the air change, I know a storm is impending.  Not so long ago the fate of a pancreatic cancer diagnosis was a lot more certain.  Pancreatic cancer meant death, and a lot sooner than had been thought of or planned. It’s still not a “good” cancer to get, but there is a lot more uncertainty in the outcome than there use to be.

I still want concrete.  I want a date on a calendar I can do a count down chain to when we can go on long walks holding hands because that is more important than walking for exercise.

Girls days/nights where we paint fingernails that will chip the next day, spread charcoal on our faces (it seemed like a good idea at the time) or go for a drink. (uhh, I didn’t get a normal picture of just the girls, I will have to fix that)
Blogger is telling me I have too many pictures, and my clock is telling me I’m going to get less than 6 hours of sleep, so the normal pictures will have to wait until tomorrow. 
Love, Heather

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It’s never what I expect, and today is no exception.  I miss 2nd ward traditions, I wanted to see our little Primary singing, etc.  Our new ward is starting to feel less strange, but I still miss our old ward.  It’s apparently about a 4 year long recovery time and we are 4 weeks in.  I’ll make it.

They did something today that I liked and have been thinking about all week, trying to gather my thoughts.  Sharing our favorite hymn with a short why.  Like many of my other favorites, context matters but all week I’ve been thinking of “A Child’s Prayer”

Rules were simple, a 1 minute “why” and from the hymn book.  I had managed to write down a why that was condensed and photocopied the song from the Children’s Song Book.  Both rules circumvented, but it was very busy and I still feel a bit guarded {unless I’m spilling all of my inner thoughts on here} so I didn’t get a chance to share, hence being here.  The song is above, with scenes from Cokeville Miracle {great movie by the way} Here is my “why”

Spring of 2013 I was dealing with The Very Hardest of Hard Things and was very traumatized.  Up didn’t seem like up and for a week or so I was surprised each morning when the sun came up.  I had no grasp on reality, but I knew that Christ knew me personally and believe that his heart ached with mine.  I’d had a priesthood blessing from my Bishop and I know he cared, but I felt very alone and very scared.  My prayers had very few words, lots of sobs and tears filled with emotions that there aren’t words in the English language to describe.  I’m not certain how that week ever ended, but it did as the Hard Things continued to pour forth.  I acutely felt the lack of priesthood guidance in my home, as well as a partner or helpmate to get me through.

A few weeks after that very first night was General Conference.  I remember so many details of that conference, the feeling of the blanket on my lap, my snacks, the smell of breakfast, my little TV with crappy signal, the pajamas I was wearing.  Boyd K Packer gave his talk These Things I Know and in that talk are two great truths I needed to understand.

I have come to know that faith is a real power, not just an expression of belief. There are few things more powerful than the faithful prayers of a righteous mother.

Up until then I’d thought of faith as a feeling or emotion, not a power in itself and I discredited the power behind my wordless prayers that went straight from my heart towards heaven bypassing my mouth entirely. I knew God didn’t answer my prayers how I had planned but I believed that yes, he does answer every child’s prayer.  I don’t remember anything else that conference, just that I was going to be okay.  I was fine on my own {fine is a relative term} and that my faith had power behind it, not just warm feel goods.  We were going to get through

Things are different now, We are dealing with Hard Things 3: Cancer, Again. instead of  Hard Things 2:  The Very Hardest of Hard Things  The kids are older (easier and harder all at the same time) and I’m not alone (but at times I still feel very lonely and afraid) and in some ways they are the same.  That first week feels like an alternative reality, and I’m not certain how it ended.  I’m not sure what I’m suppose to learn this time, but I’d like to learn it so we can move on to a chapter I’d like to call After Hard Things Life is Grand but I don’t know that my life gets that chapter, so I’m working on finding grand things in the midst of Hard Things.  Life feels very uncertain for me right now, but I know Christ understands me, and he knows what it’s like when I’m paralyzed with fear and uncertainty.  God does answer every child’s prayer, and not just all those other prayers but my prayers too.  I believe in the power of believing.  What I wish I knew is where all of that is going to leave me, but for tonight I pray in sobs of uncertainty and fear knowing that there is power in that prayer.

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Edward Bulwer-Lytton coined the phrase “the pen is mightier than the sword” I don’t know anyone who hasn’t at some point been hurt by harsh words.    Words said in anger, while in a painful place, or even words that left unsaid in painful silence.  Perhaps the worst is when words and actions don’t match up.  The internet is full of memes trying to inspire the world to T (is it true?) H (is it honest?)  (is it inspiring?) N (is it necessary?) K (is it kind?) before you speak, be kinder than necessary and so many others and those who are unkind need kindness the most — combining the power of words with actions.  Just as words have the power of bringing pain and hurt they can uplift, bring hope and heal.

At times emotions run so intense that they spill out in a fury of words, easy to justify because they deserve it, the situation called for it, or it just couldn’t be helped–unfortunately these situations only hurt everyone involved even when they can be justified.  As I think about role models in my life and the attributes they possess that I want to emulate the one constant is that they are always kind, in words and in actions.

I dream of a world where being kind, not just to our friends but to everyone especially when they don’t deserve it, and wonder what that would look like.  If mean behaviors were countered with kind words and understanding.  I keep trying and having to start over on bad days when my patience runs short and the list of demands on me runs high and my sarcasm changes from humor to a coping mechanism.  I justify it and in the morning promise to start over again.

I look at the problems our youth are facing with bullying that extends past the school day and creeps into their home over the internet.  Words, nothing more than words that sap our youth of their confidence, self worth and inner strength.

Please, please be kind.  Always.

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Welcome Winter

Spring snowstorms are my very favorite.  They are heavy, wet and give us necessary moisture for summer all without bitter near zero (if not below) temperatures and bitter winds.  This winter has felt like not winter at all, almost no snow and a few rain storms in there (yes, rain) but not nearly the moisture we need stored in the mountains.  This is the second weekend we’ve had soft, heavy snow storms that make the roads a slick mess but coat the rest of the world in a beautiful white coat.  It’s not very cold and it looks like a winter play land in my backyard.

Isn’t it beautiful?

Fortunately for my play land, these storms are also huge light boxes capable of being as effective as a green screen.

Ms Pria, playing in the snow

I have a bunch today and outside is pulling at me, so I took a break with my camera while letting Pria out and came up with these.  I’m back inside now, making sweet pork, cilantro lime rice, and black beans for Michael’s birthday dinner.  I have a post for him mulling around in my head but need less distraction around me to write it — watch for it later.

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With the exception of school, I’ve written for me and not anyone else.  It helps me process my thoughts and feelings and come out with an improved perspective or action plan.  I’ve never had to worry about my ‘audience’ because I don’t really have one.  I’ve never cared about “how to get people to read your blog” type information since this blog is entirely self centered around what I need.  I simply publish it because I want to (see, self centered again)  I’ve never worried when I’ve had writers block because I don’t have deadlines or publishers and my family being able to eat isn’t dependent on my words being marketable.  If I have writer’s block I just don’t write, I will go for a walk or sit in the sunshine.  The past few weeks has been the opposite of writer’s block — it’s like I’m in a storm of words, thoughts and things I want to share with you.

I’m taking on a self assigned task of writing about Hard Things.  I started with Freshman English guidelines.  Why am I doing this? Who is my audience? What is my purpose? How do I want to get there.  I’ve never objected to writing papers for a grade but the writing I do for me is this blog and my journal and much less organized than Hard Things (not my end title, just my current reference) In writing I’m feeling emotions from the last two years resurfacing with great force, without the numbing effect of shock.  It leaves me wanting to blog about things, but oh so many things all at the same time.  How amazing my life is, the power of having good friends, the strengthening ability of the sunshine on my face, praying that this non-winter we are having has a minimal impact this summer and that my flowers coming up don’t die, how my back is doing, plans for the yard and oh so much more.  My brain seems like Kaede after a busy day at school and 10,000 thoughts coming out all at once.  Maybe I need an assignment so I can focus my thoughts a little?  It could be that I’ve been neglecting my blog and I’m trying to catch up like a short visit with a friend you haven’t seen in years.

I looked back over my last few posts and realized how far apart they are and that there really isn’t any update after the wedding I will share a few pictures with you.  These are from Mom’s camera and I’m leaving out the shots of her skirt, thumb and the ceiling at the church.  The day was absolutely perfect and I wouldn’t change anything about it if I could.  Life as a new family afterwards has been even better and I acknowledge the impact my friends have had in my life and that I would never have been in the place I needed to be to have the blessings in my life I enjoy every day if it wasn’t for their kindness and strength on the very worst of days.  As I think back to my wedding day and on my joy and the peace in my life I always take a moment to thank my Heavenly Father for my friends and family.  They’ve been miracle workers in my life and answers to many prayers.

Going from getting married to blending families, budgets, homework, Christmas concerts all in a whisper of time is different than I ever imagined.  It makes sense, all the time that newlywed couples get together and alone is different for us.  Most nights we have kids, homework, broken arms, etc and it would be so easy to neglect one another.  So easy it seems natural.  I am very fortunate that we have made a promise to each other to make time for us, not just date nights (although I love them) but using each moment we have.  I love you Neil.

Pictures from Mom, SOOC.

Summer (pre-wedding) trip to the cabin.  This is what happens when the ropes to the swing need to be replaced.

Swinging, Tarzan style

Yes, it’s very fuzzy.  I don’t care.

Michael’s turn.

Neil.  I love him.

Aren’t they the greatest?

Less fuzzy, still swinging.

Wedding wonderfulness 🙂

Gary and Holden (Tasha in the background, probably making sure Uncle Gary doesn’t teach him any undesirable tricks) 

Kaede

Ryker and Aunalee

half of Grandma (I wonder who is holding the camera?) Grandpa and two of his boys and Terry

I wish I knew what he was thinking

Terry and Holden

Kaede, Ryker, and Charlet

Me and Dad.  A few seconds before this I realized I left bouquet elsewhere

floor perspective of the ceremony

Neil, Ryker’s arm, and Michael

My boys

more ceremony

First Kiss

I love him

I have no idea what I’m doing, obviously not paying attention to the camera…

Us

Kaylee’s beautiful lettering.  I’m jealous of her talent.

Food! Family! Friends!

Ryker and Charlet playing “A Thousand Years”

Four generations

Feeding Grant, because feeding babies is awesome!

Jaron, Mina, and Grant

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Quote Hunting

I’ve spent the last 40 minutes looking for a quote that I can’t find.  If anyone knows it I’d love a reference for it. Meanwhile here is the background. 

My pain is getting worse, little things are stacking up on each other with little to no resting time. Last week at work was crazy, I only got lunch one day and the constant running was hard on my back —  especially my climbing over a feeding tube, vent hoses/wires going to the wall, under suction tubing and then stretching sideways. Last week was just the foundation for this week. Every day I have to be at the hospital between meetings, extra shifts, and picture day. Did I mention I’m hurting more? Almost like I’m back in July hurting. I have renters to move in, which means updating the lease that I’ve been putting off can’t be put off any longer. The kittens had a crazy day today breaking the glass out of my favorite picture of Christ and my good mixing bowl. I woke up to glass everywhere upstairs. I can’t neglect to mention the large and obvious chin zit because why should my skin cooperate with me?
I was around my favorite people today though. I’d rather have days (weeks?!?) like this with people I love around me than have a so called perfect day without them.  
Here’s my quote on one of my pictures that warms my heart. The idea isn’t mine and I’ve seen something recently that I can’t find tonight. 
~H

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