Thursday, May 29, 2014

Reflections

Yesterday was a long and busy day.  Today will be even longer since it is transfusion day!

I rolled out of bed this morning, after 5 restless hours of sleep, extra early to make cookies!  Yes, cookies, because what else is there to do at 5 am?  I submit that there isn't a better early morning activity! ;)  Chocolate chip cookies are just a great reminder that all is well with the world!

I stood in front of the bathroom mirror and for a few seconds, caught a glimpse of the deep wrinkles settling in comfortably around my very tired eyes!  I rarely pause in front of a mirror for any length of time because all I see are all the things I hate, but for a moment, I stood there with those wrinkles but today, they were a kind reminder of where I've been.  I realized I have complimentary wrinkles...the little ones around my eyes from a lot of crying but the bigger ones around my mouth from ear to ear grins.

I can't say that I have entirely enjoyed my life...I haven't entirely hated it either.  I guess I'm just about as content as I could be.  It's been a life of trials and struggles and hard things.  It's been a life of unbelievable joy, surprise and learning.

I have lived on, lived down, lived out and lived through things I don't ever want to experience again.

I have lived...that's for sure.  I haven't always lived gracefully but I have always done my best.

With a deep sigh...I shook off the sleepy fog and stepped away from the reflection.



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Monday, May 26, 2014

True North

This weekend, I took a little drive to Canada.  Just a little drive...like an 18 hour round trip little drive.

I did great on the way there but the way home...I was so tired!  I was tired the second I sat down in the driver's seat.

Of course, we never go home without stocking up on the essentials:

Ketchup Chips
Popcorn Twists
Eatmore Bars
Big Turk
MacIntosh Toffee
Kinder Eggs
Nibs
Lime Crush....the list goes on but I'm a little embarrassed to continue listing it all. The trunk was full!  The best treat of all were the Timbits from Tim Horton's!
image:Timhortons.com

I promised Sam a box of Timbits, which I purchased but...because I was so darn tired, I needed something to keep me awake and they were just so handy to eat!

I kept eating, and eating and eating and sleeping... sleeping  driving!  It was terrible!  I finally had to move the Timbits to the trunk so I actually had something to give Sam when we got home, plus all that sugar was freaking out my body!

From there, I switched to Nibs.   Finally, after arriving at the first pit stop, I caved and bought an enormous Pepsi.  Either the caffeine would keep me awake or stopping every 25 minutes to go to the bathroom would!
Anyhoo...we made it home.

We had a nice time with family at the Cardston temple for my nephew's wedding.   We were also able to spend time with my grandma who is 97 years old.  My Grandma has Dementia/Alzheimer's and you are lucky if she can recollect anything about you.  However, when Shelbie started singing some of her favorite Hymns, she remembered the words and mouthed them along with her!  I find that so fascinating that the music can really unlock the mind.  It's amazing to me so we just kept on singing.

Shelbie singing with my dad to my Grandma.   I was playing the tunes.
All the family!
A few of the cousins...and our friend 'M' on the end. 
It is always nice to go home.

We have a busy and big week shaping up.  Tons of doctor appointments to get through, the last week of school and IVIG transfusion. 

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Tuesday, May 20, 2014

The Makings of Crazy

One thing about chronic illness is it pretty much makes you crazy, among other things but crazy is the thing that stands out this week.

So, there those results sit on a desk not far from here.  I have been through just about every emotion in the past 6 months as we have waited.  Among all the feelings was the underlying pull of denial.  Denial really messes with you.  If you indulge in denial for too long, you begin to lose sight of what is real and everything actually appears just fine.  Denial has a friend doubt and doubt messes up all the sense that denial tried to make out of a situation.  You second guess everyone, everything and most of all you second guess yourself.  Your understanding of things becomes based on doubt and denial and that just creates a big mess.

I have gone from loving our doctors to hating them.  I have gone from feeling like driving all night to get to Seattle to get the news, to not really caring if I ever hear the news and then back to wanting to drive all night.  I have been doing everything I could think of to push away from what is inevitably going to happen.  I have been doing everything I could to be mad and stay mad.  It's way easier to be mad than terrified.

Yesterday, after a series of unfortunate events, it was determined that a conference call did need to happen.  When the nurse from our local Oncology office called to set that up, I felt ashamed at being so cranky about wanting a conference call but not getting a conference call.  Then I got the conference call but I really don't want the conference call.  I spent most of the afternoon and evening just in knots over this.  Why can't I know what I want and why do I always feel restless?  I hate not feeling grounded!

I finally got up the courage to email our wonderful doc in Seattle yesterday and attempted to get clarification since she seemed to go from this being a big deal to not a big deal.

She called me at 7:30 last night to talk.  She was very concerned about how I was feeling and wanted to set things straight.  I was so glad she did...sort of.  She said that the kids are not in immediate danger, not any more than they are on any given day and there is nothing she would do differently in this moment. Nothing to panic about.  However, she said that there are many things we need to do for the kids as soon as we can get started and decisions need to be made on how to approach the near future.  They need to have bone marrow biopsies again! We just did that it feels like.

That was a hard conversation because it brought me straight out of denial into those not so fun things I have to face and feel.

So, the conference call is happening next Friday, here at our local Oncology office.   She felt like it would be okay to break the news to us this way as long as we could be with our doctor here.  Then, we will make a plan for getting to Seattle to meet our new team of doctors.

I am fine for the most part, just a lot of internal struggle to gear up for next week.  It's going to be tougher than I am letting on.  You know what my biggest fear is about the conference call?  Crying.  I don't want to break out into tears when she tells me.  I want to be strong.  I want to be brave and front my way through this...but I'm afraid I won't be.  I bragged that this wasn't my first rodeo earlier in the week and while it isn't, it's a new 8 seconds I really don't want to experience.

Yesterday, Spencer sent a picture of him on a hike he took for P-day.  I know he's been sick almost daily and I know he has not gained an ounce of weight and after seeing the picture, I think maybe he's even lost a bit.  His pants just seemed to hang on him.

So, yesterday was a crazy wake up call!  I hate crazy wake up calls as opposed to just a normal wake up call.




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Friday, May 16, 2014

Cool and Collected

I am attempting to be cool and collected...it's a lot harder than one would think.





Genetic tests are back.


Sitting on a desk like the next guy's CBC test that is all normal.

Just sitting there.

It's not normal...in so many ways, the test marks all sorts of fatal abnormalities...this is not normal.  Or maybe it is.

Maybe, it is normal to get a call saying they have found the Golden Ticket.  The thing that is making your kids sick every day for 22 years and then wait 6 months to confirm what they already know, and confirmed multiple times in a lab in Seattle, I'm sure.  And then, I'm sure it's completely normal to make the family, who just shelled out thousands, upon thousands of dollars, wait to hear the clinical test results, not when they come in, but after they drive 14 hours to sit in a hospital for 1 hour.  It's completely normal!

But there they sit...on a desk...an 8 min drive from my house...a 15 min bike ride...a 25 minute walk...one hour if I crawl...but I have to drive 14 hours before I get to hear the final word.

The final word.

This is it.  No more grey area.  No more wondering.  No more denial. This paints a -not- so- abstract picture of how it might end.


While I sit here, trying to remain cool and collected, graceful under pressure,  I will be watching a little girl on her way to celebrate life with Make A Wish, just two weeks before she undergoes and very precarious bone marrow transplant in an attempt to save her.  She is running out of time, not leukemia, not myelodysplasia but telomeres that are suppose to be protecting her chromosomes are getting shorter and shorter.  The shorter they are, the more difficult transplant is.  Her's are very short.  My kids' telomeres are also very short.

All this little girl wants is to live.  She wants her mom to promise her that this is going to work.  Wouldn't it be nice if a mother's promise was binding to the Universe?  That the broken body of her little one could be cured at her command?  But it isn't and it's probably for the best that a mother doesn't command that much power...God has a plan, its in His power and like this mom said to her daughter '...whatever happens, you will be made well.'  It's true, but it's still hard.


I need to remember that today.  God has a plan for us too...he has a plan for those results that are sitting.  Just sitting. Waiting for someone to pay attention; someone to consider how uncool and uncollected this is and has been from where I stand, not to mention where my kids stand. I have to trust in God's timing too...so, here's to being-

Cool and Collected!

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Wednesday, May 14, 2014

16 and Sam!

Sam is officially 16 years old!  Good times...Here is a little montage of my favorite pics of this sweetheart through the years...


My little man...





This is probably my favorite picture of all time.  He was so happy on his Wish trip!!!  For one minute in his 16 years of life...he had not one worry.  He was happy, spontaneous and just that little kid again!  I wish I could relive that very moment!

Brothers!  Spencer handed the 'man of the house' baton over to Sam he has taken it and been the very best priesthood holder a mother could ask for!

Tonight, we will have just a little time the three of us but his big shin dig will be on Saturday at his Dad's.  I won't be able to attend because of awkward divorce stuff but I know he's going to have a great time!   His dad and I have worked together with his happiness in mind.

So, this birthday means Sam is free to dazzle the women with his good looks and charm!  I don't allow the kids to date until they are 16.  He missed Prom by 3 days!  He never complained once and made the most of his Saturday even though most of his friends were at Prom.  He is a great boy.  Very considerate and tries to be easy going even when he doesn't like the rules.

I have been quizzing him on how to treat a lady and I think he is doing a good job.

What Sam doesn't know....Is that he can't take a girl out until he has taken me out!!!  When he takes me out on a date...he will surely have to endure "Part 2 of the Birds and the Bees...Advanced lessons in respecting a girl because if I find out you have disrespected a daughter of God...Aye, Aye, Aye."

Do you like the title of my speech?  Yep...he's totally going to love it!!! Can't wait!!

Well, another year that he has survived the uncertainty of Shwachman Diamond Syndrome.  So happy for milestones!

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Monday, May 12, 2014

My Missionary

We were so excited to Skype with Elder Spencer Goff!


We were all crammed in around my phone...I have yet to figure out how to get him on the big screen so we can all see better...maybe by Christmas I'll be smarter.

Anyhow...he is doing so well!  Without a doubt, he is happier than I have seen him.  He is more confident and more humble.  I love how he has changed and grown.  He still has that great sense of humor we miss so much.  I was trying to ask him serious questions and slowly, he would start sliding off the screen.  I looked back to see Shelbie was doing the same thing!  They were mimicking each other and goofing around.  I didn't mind so much, it was good for Shelbie to re-connect with him.

We didn't get to talk for very long.  Just like everything else in divorce, we had to split the time he was allowed between me and the wasband.  That stinks...He called us last so it was kind of short.  But still...it's all good.

Spencer just refuses to complain about anything!  Which I love.  He has worn out two pairs of pants already.  I told him that I could send him new pants but he would have to get them altered somehow since he wasn't here to try them on.  He said, "Mom, just don't worry about it. I have two pair and I am just content and fine."

When I asked him how he has been feeling, he changed the subject right away.  I said, "Are you sick a lot?  Like everyday sick?"

He got a sheepish grin and said, "Mom, just don't worry."

I know from the look on his face that he has really been struggling with his health but blessed at the same time that he can continue to work hard.

I am feeling okay about it.  I pretty much knew he would be sick daily but Heavenly Father would bless him.
I am so proud of him.  He works hard and doesn't let anything get in his way!

The one thing I love about Spencer serving a mission is the way we connect on a spiritual level.  So often, he will say such random things in his letter but low and behold, its something that I needed for the week.  I will often do the same thing.  I can't imagine that could have happened any other way.

I am one lucky and blessed mom!

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Thursday, May 8, 2014

Cupcakes and Mustaches and Freudian Slips

Sam turns 16 next week!  All of Sam's friends had big parties for their 16th birthday.  I have typically offered that deal to Spencer and Shelbie when they turned 16 but Shelbie had no friends, so no party.  Spencer was having surgery on his birthday and then spent two weeks in pain on the sofa so no real party to speak of then either.

Sam...he has friends and I don't expect him to have anything major come up so, we are having a party.

I arranged with the Wasband to have the party at his house since it's much bigger and he has a way nicer yard with all sorts of fun things to do.  I figured it would be pretty laid back and the kids would just hang out, play some outdoor games, roast a hot dog and that would be it.

I went to Walmart to grab some invitations but all they had there that were remotely acceptable were these...

Nothing special but I didn't really think a 16 year old would pay much attention to it and none of his friends even had invitations...  I set them out on the kitchen table that night and went to bed thinking I had really gone the extra mile!

In the morning, Sam saw them...

"Mom, are these my invitations?"
"Yes, cool right?"
"Mom...this is a joke right?  These aren't MY party invitations?"
"Ya, they are. We can serve cupcakes and stuff, it'll be fun."
"Mom...I am sixteen!  This is a party for 16 year olds...these are invitations for 6 year olds!  Mom!!! You are the most creative, crafty mom I know...and you bought invitations?  From WALMART? You never buy invitations, you always make something cool!  You are cool, what is this?  MOM!!!!"

I am still laughing when I think about this...I wish I had of video taped the whole event. His face was priceless!  His voice kept getting higher and higher...I couldn't stop laughing!

Seriously, I didn't even realize what I had done until he pointed out how ridiculous these invitations looked!  I think I might be having a hard time thinking about him turning 16!! My baby!  My last little boy!

Last night, I spent no less than 2.5 hours trying to come up with a new invitation!   Here it is...

The only problem now is...It's no longer just a little fun get together!  It's an event!  It's a themed party and that can only mean one thing...WORK!  

So, it's a Mustache party with hot dogs, smores, a candy bar, a popcorn bar, a photo booth, slacklining, mustache pinata (I did get this approved for 16 year olds) and an outdoor movie!  

Oh, and Sam will be handing out mustaches to everyone who comes!  
Oh, and I will be making a mustache cake
Oh, and I will be making props for a photo booth
Oh, and Shelbie doesn't know it yet but I signed her up to run the photo booth
Oh...I still have to tell his dad he's having a party at his house for Sam...a party, not just a gathering.
OH MAN...my baby is 16! 

OH WHAT FUN~

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Wednesday, May 7, 2014

Just wondering...

I have had a lot running through this hollow mind of mine.  This week has been a week of thinkin'.

My good friend's husband passed away this week.  We aren't the kind of friends who call every day.  We don't hang out on the weekends, or go to events together.  We don't even really share the same interests. She is one of those rare friends who I allowed to view my raw and uncut life from within an arms length.

 A couple of days after I lost my job, she came by.  I was laying on my bed sobbing and she came and sat with me. (one of the very rare times I didn't even attempt to pull myself together with a fake shimmer of happiness) She just sat there. She didn't say one single word for what felt like a really long time. She instinctively knew that my sadness wasn't about the job, it was so much more! I didn't even have to explain that!  Even when she spoke, she didn't fill up the space with clever adages or cliches.  She met me where I was and just witnessed the mess I perceived myself to be in.  From that moment, that is the kind of relationship we have had.  We understand each other. We visit often.

When her husband got cancer 16 months ago, I could reciprocate that love she showed me.  Our hearts are two peas in a pod...We feel deeply.  We have strong testimonies but when we hurt, we hurt.  She carries herself in this peaceful, confident way but she is able to express her fears and worries in such a way that I can relate to.  I love her honesty.  I love that she can trust me to meet her where she is at instead of filling our time with...Keep you chin up thoughts that only prove to be patronizing. It's not often you find someone to complement you like that; an understanding that is met in such few words.  I love her and I hurt for her pain.

I spoke to her the night before he passed away and her whole being was feeling deeply, his suffering.  It's so hard to feel another's sadness but I felt blessed to spend that time with her.

I had another dear person in my life lose a loved one yesterday! I find grieving to be such an interesting thing.  I have been humbled as I watch these people I care about suffer, handle their sorrow.

In addition to the grief, there are the hard things I see people face.  I see how their moods ebb and flow, peak and fall.  I see how people around them just want them to be happy.  I see myself in them.  So, the question I can't get off my mind is...

Is Happiness a destination and once you arrive, you plant yourself firmly and you are happy the rest of your days...or is it a process? Does happiness come and go? Is it okay to not feel happiness every moment of every day or is that a sign of weakness; sickness? Is there a difference between being happy and content? Should we feel embarrassed if sometimes we feel frustrated, exhausted even resentful instead of happy?  Why does it seem that it's okay for other people to have a 'bad' day but not you?

There are lots more questions where those came from...Just wondering.  I have found the concept of happy to be so intriguing lately!  Observing people in their happy place or not, has been another fascinating past time.  Lots to think about!


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Monday, May 5, 2014

Chit Chat

Today, while I was cleaning, I got a text from Shelbie saying she was going to get her nails done.

When I was jobless, I use to go with her when she got her nails done and we would look at magazines, chit chat and what not.

After I finished the second house, I decided to just surprise her at the salon.  She has been having a bit of a hard time lately and has a lot of worries so I thought she would be happy I just showed up!  She loves it when I take time out of my day for her.  Lately, I haven't been very good at spending much down time with the kids.

We were talking while she sat under the curing lights and the only other person in there, came to sit across from us.

She said, "I think it's sweet you catch up with each other at the nail salon.  You must be pretty busy if this is the only time you can talk."

"Ya, we're weird.  I just saw her a few short hours ago."
"You did?" the lady asked.
"Yep, we live together.  You can never have too much mother daughter time I always say!"
"Yes...you are weird.  That is very weird."

Hmmmm...I don't really think we are weird.  Some day, I will look back on today and be really glad I took 20 minutes out of my day to connect with my daughter.

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Thursday, May 1, 2014

Spring

For the first time in 4 years, we all have a bike to ride...thanks to Direct TV! 

Yep, Direct TV made a series of errors with my account and so to beg my forgiveness, they sent me a $100 gift card.  My 20 year old bike fell apart a few years ago so I've been without one.  When the kids said they really wanted to have family rides...I decided to use the gift card to get a new bike!  

I found a bargain at Walmart for less than $100.  It's not awesome but it works and we had a great time!


This weather has been nearly perfect!  Just the right temperature!
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