Sunday, January 31, 2016

Super Human

Well, another weekend has come and gone.  I'm not exactly sure what to write tonight.  I have thought long and hard about this blog.  Sometimes, I think it is all just too much.  It's too much to write, it's too much to read.  I keep thinking I just need to make up something good and funny.

But...this is the real deal.  This blog is about what it feels like to live with this disease.  I think it may come as surprise to many that I am not perfect.  Surprise!  I'm not.  I'm not perfect and I'm not super human.  I don't have any special skill set you don't.  I haven't been given a leg up on faith or hope that makes me anymore equipped to deal with this than you or anyone else would have.

At times, I think I could win the gold for an Olympic event for the highest and farthest jump to conclusions.  In the next minute, I'm a Queen for the day...the Queen of Denial.  And then, in another quick blink of the eye, I'm exhausted beyond any description of fatigue and exhaustion and cry without having a really good reason to do so.  One day, I am on my game!  I'm a valiant daughter of God with a keen spiritual sense of the direction we are going and I'm 'okay' with what is happening. The next day, I somehow wandered so far from that I hardly recognize the terrain.

It's a mess...but somehow, we keep going.

Last night, in the middle of the night, I was awakened by a hysterical Shelbie.  If you think you can't find the words to say to me when we bump into each other at the grocery store, try finding words for your 23 year old daughter at 1 in the morning, who still has a lifetime of dreams in her head.  There are no words but I have arms to hold her and that's all I do.  I just hold her...and then we make popcorn!  No joke!  That's what she wanted.  I actually think it's an awesome coping tool because I am finding that there definitely needs to be an activity to break the spiraling thoughts that lead to nothing but despair and depression.  This has been my observation for the week...spend a minute or two listening, talking, validating, witnessing then...switch gears.  Literally switch it off.

Tonight, denial has been hanging out and I think to myself that this all going to blow over in a week or two.  Wouldn't that be great if it did?

But...then, today at church, I was sitting next to a lady who lives a couple of doors down from me.  We rarely talk but the teacher of the class had asked us to discuss with the person next to us a concept about something.  Neither one of us had anything to say about the concept so we just sat there in silence.  Then, out of the blue, she holds her phone out to me and showed me a picture of Christ holding Mary and Martha, the sisters of Lazarus.  I said nothing.  I looked at her a bit confused.  She said, "I watched this bible video about Christ raising Lazarus from the dead.  I loved how he took Mary and Martha in his arms and held them while they cried. He cried too.  It's a tender thought don't you think?"

Yes...a tender thought for sure.  In that moment, I wondered if I will be able to feel Christ holding me as he sees these struggles I am enduring with my kids.
 
https://www.lds.org/bible-videos/videos/lazarus-is-raised-from-the-dead?lang=eng






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Friday, January 29, 2016

Patience and Prayer

This week!  I tell you...the energy it takes to be patient and pray is astounding.

Patience and prayer in some ways, goes against my grain.  I'm a mover and a shaker.  I make things happen.  I don't sit around, ever.  I have been trying the past few years to really focus on the will of God, especially when it comes to things I can not change or can not control.  It is a trial in itself.

Honestly, yesterday was a shambles.  Just a downright messy mess of a mess.  The day was being fueled by frustration, fatigue and anger, not faith.  Nothing close to faith.

This morning, I said my prayers.  Do you ever feel like prayer is just an exercise in passive laziness? (Yes, I meant to be redundant) What I really want to be doing is knocking heads together, making mean and angry phone calls, getting appointments set up, screwing the insurance protocols...This isn't just anyone we are talking about here, we are talking about my daughter.  My little girl.  My flesh and blood.  An amazing human being with a spirit as strong as anyone I know.  A young woman with a heart of gold who has been through way more than most adults who lived to the ripe old age of 90. Don't they know?  Don't  they know how precious she is to me?  If they did, they would be hurrying to find out what is causing her so much pain and distress.

Despite all the feelings I am having.  I said a humble, patient prayer, conscious to align my spirit with God's.  Pleading if at all possible, we could get a plan underway.

Then, I heard that an acquaintance of mine just found out two weeks ago that her husband has lymphoma and started treatment earlier this week already with the same doctor that has literally been ignoring us.  I was heartbroken and just sad.

But...I steadied my heart and continued to do the only thing I can do...counsel with the Lord in everything.  Every thought, every worry, every bitter moment that comes.

Finally...Our family doctor had his nurse call to tell me that they had faxed all of Shelbie's records to Seattle Cancer Care Alliance and sent the insurance referral.  Just minutes after that, the nurse co-ordinator emailed me that she had received medical records for the past year and is preparing to get us on the schedule and get another bone marrow biopsy scheduled in Seattle.

Now...I want to cry in relief.  Even though prayer seems so passive, it holds more power than any other force known to man!

In other news...I have a big surprise planned for my sweet Shelbie. It is to end the last day of my 29 Gifts project!  She loves themed hotel rooms.  I called my Wasband and we talked about it and together, we have reserved an Italian themed hotel room!  Little Bear and I will be going to set up the room with dinner gift cards, movie passes, baskets of treats and drinks.  A little overnight getaway to just have fun and forget this week even happened!

Shelbie has plans with her best friend tonight but I told her I really needed her to stay home tonight.  She got a little upset at first because her best friend is leaving for a few months this coming Wednesday but she conceded.  Little does she know...her best friend will be spending the whole weekend with her at the hotel and having fun!   I'm so excited...it's like someone opened the window to let some fresh air in this stuffy, suffocating little week we have had!



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Thursday, January 28, 2016

Amazed by Grace

I am amazed by so many things these days.  Mostly, I am amazed at Shelbie.

I am amazed at how she is handling this trial.  I am amazed at her strength, her courage, her ability to keep on going in face of ever increasing odds of this not ending well.

I am amazed that I am having a harder time than she seems to be.

I am amazed that once again, we are the ones having to wait this out for what really feels like unreal, unfair, unprecedented amount of time.

I am amazed at just how much the human spirit can handle.  I'm amazed at how much we can handle. I feel like I barely survived the life threatening infection of Spencer and Shelbie's stroke.  It seems entirely unbelievable that this is really happening.

I feel like I should be trying to capture some of our moments on video because they are so amazing; staggering to me.  I am finding it extremely hard to stay present.  Most of the time, I feel like I am viewing life from the corner of the room and just watching things unfold. In some ways, I don't even feel like I have control of my words, my thoughts, my anything.  I am doing everything in my power to just keep it together and so everything is a jumbled mess and I laugh at inappropriate times and cry for no reason and get angry over things less important than even spilled milk.

One of our moments happened late last night.  When the day finally unwound itself at about 11:30 pm, the kids were tired and hungry.  One of our traditions is to make runs to McDonalds at midnight, especially when the day has been hard.  It's not about the food as much as it is about laying around the living room, eating crappy food but devouring our love for each other and sorting life out.  It's the time when my kids are chatty and relaxed.  We have solved many a crisis over cheeseburgers at midnight.

Last night, after the hurricanes from the day blew over, I ran to McDonalds for snacks.  As we sat in our living room eating, I started choking on my tears.  Shelbie came and hugged me and Sam made fun of me!  Bless my boys for their unwavering humor!  I pulled it together and then Shelbie wanted to talk about what happens when people die.  For an hour we discussed death, the people we will be reunited with, the people we are racing to the finish line with...It was actually an uplifting and liberating conversation to actually talk about our biggest fear in life.  It's harder to pretend that everything is fine instead of just facing the fears head on.

We were all doing fine, even laughing at one point and out of the blue, Shelbie panicked!  With her eyes as big as could be, she said, "I can't breathe! I can't breathe!  What is happening to me?"   I fell to the floor and held her until the moment passed.

I was up another 2 hours and thought about how much I hate this.  I hate that this is what has become of us.  I went to bed just after 2am, angry as a hornet.  I woke up 3 hours later in tears.  Crying in my sleep, that's so awesome!  It hit me that maybe all of this waiting, all the chaos that gets stirred up in a day is a blessing.  I do think we are better off for talking about the very thing we want to run from.  I think it is good to have our fall aparts because it's easier to move forward.  So, maybe, as much as I want this time to be a little less messy, maybe it's just perfect and just right. By the time we do get an answer, we will have already experienced the worst in our minds so it can't possibly be worse than that.

We did receive the printed report yesterday on the CT scan and without a doubt, this is serious.  The lymph nodes are lining part of her renal system which explains her bad back pain and urine retention. Shelbie looked up the actual name of the lymph nodes the radiologist mentioned and it is, without a doubt, one of the first signs of metastasized cancer.  I can't read one more thing about this.  I'm still holding on to hope that this is something of a different nature; that it can be fixed.

I hope I can always find a way to be amazed by the grace of God we are seeing and not get so lost in the sorrow of it all.


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Wednesday, January 27, 2016

Hide Your Crazy

On our way to some appointments in the city this morning, a song by Miranda Lambert came on the radio called 'Mama's Broken Heart'.  Here is a part of the lyrics...

Go and fix your make up, girl, it’s just a break up
Run and hide your crazy and start actin’ like a lady
'Cause I raised you better, gotta keep it together
Even when you fall apart
But this ain’t my mama’s broken heart

Powder your nose, paint your toes
Line your lips and keep 'em closed
Cross your legs, dot your eyes
And never let 'em see you cry

Go and fix your make up, well it’s just a break up
Run and hide your crazy and start actin’ like a lady
'Cause I raised you better, gotta keep it together
Even when you fall apart
But this ain’t my mama’s broken heart

I've decided this is our theme song for today.

Hide'n the crazy is what it's all about.

Today's been a freaky hard day for me on the inside, Shelbie is meh...and Little Bear is hanging by a thread and getting sick but won't let me take care of her so...I'm 0 for 3.  Can't fix a darn thing today.

On the outside, Shelbie and I are out of control with sarcasm and poor humor and Little Bear is probably so confused that we could be laughing at a such a wretched time.

So it goes...

I heard from Dr. S this morning!  Hearing her voice of reason was like a tall drink of water.  I miss her so much.  She is the real deal.  A doctor with heart and soul and love for her patients.  She isn't going to get a dime from talking me through this and we will never be her patient again but she insisted that I send her regular updates as this 'thing' with Shelbie unfolds.

I reviewed the past year with her and the fact that lymph nodes around Shelbie's lungs showed up last Spring and our Onc. glossed over it telling me I was just worrying about nothing. I'm sure she didn't mean to gulp and lose her words for a minute but she recovered well by saying, "Well, we can't change the past."  

Without mincing words she said, "Kath, you have to get her to Fred Hutch in Seattle.  I will call my colleague Dr. Keel and tell her the situation.  She works with my one other adult DC patient and many adult SDS patients.  You cannot afford to let doctors do this to you again.  Any local Oncologist you see, even in Utah is going to test for the basic leukemias and lymphomas and when those come back negative, they will send you on your way but Shelbie is too complicated to let this go.  Something is happening to her."

She went on to say that she is betting Shelbie doesn't have a typical lymphoma or leukemia.  Given her history, she is more worried about Lymphoproliferative disorder or an autoimmune disease that has gotten out of control.  She is never dramatic and never sounds panicked.  Instead she said, "Let's try to keep an open mind.  The symptoms sound alarming but I don't think it's dire yet.  We can't put this off but we aren't going to panic.  It could be a progression of her disease.  It could be other things."

So, what is lymphoproliferative disorder you ask?  Cancer.  Basically, it is a group of very rare and complicated cancers that affect the lymphocytes.  It can be 'common' in people with immune deficiencies and people with Telangiectasia's or AVM's like Shelbie has.

This thought actually crossed my mind last Thursday when we first heard the news but I haven't done any reading on it to see if I was on to anything.  I had wondered if AVM's can cause an abnormal amount of inflammation and that would send the lymph nodes into a tail spin and enlarge them.  I was sort of right...mostly not...on the right track though.

I don't know.  It's still anybody's guess what is going on.

In the back of my mind, I thought about Seattle as an option for care but it is so far away and I have such an old car and winter travel and missed work and hotel expense...yadda, yadda...I really wanted to stick around Utah, especially since Spencer is there and we could stay with him for free!

Anyways...I felt good about the plan after hanging up with Dr. S.  I called Dr. Keel's intake nurse and she said that Dr. Keel is actually not taking any new patients and is cutting back her practice.  WHAT?!!!  How could I have felt so much peace about her and now...this?  I begged and pleaded my case and I trust that Dr. S. will visit with her like she said she would so here we go again...It's in God's hands.

In the meantime, and in between time...we will continue to hide our crazy and take care of a sick Little Bear.

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Tuesday, January 26, 2016

The Physician

Tuesday.  6 days since our world turned upside down.  6 days and we have heard nothing from our oncologist.  Nothing.  6 days of trying to be brave.  6 days of trying to convince my little family that everything is going to be okay.

Last night, I didn't get to bed until almost 2am.  Trying so hard, with little success to work and even get caught up on work but that didn't exactly happen. When I decided to abandon the notion of being creative or productive, I laid in bed with my head in chaos over what to do with Shelbie and how to help Little Bear.

I have seriously never felt so committed to anyone in my life as I have been to Little Bear.  We completely transformed Spencer's bedroom to a teenage girl's room.  I have done everything I knew how to do to make her feel welcome and loved, knowing full well, that this must be the hardest thing in the world for her too. Sam and Shelbie have included her in every one of their activities and never noticed the little things she struggles with.  They just gave her total acceptance.  I just feel badly that she doesn't want to be with us.  I know the past couple of days, it's been harder to drop my life for her but that doesn't change the fact that I care a great deal about her spirit and what will happen to her when she leaves us next week.  I feel a deep sadness.

Anyways, at 5:15am, I was wide awake.  I let out an audible groan of frustration and exhaustion that even the dog sat up and looked at me, wondering why I was up at such an early hour.  The spirit obviously had other plans for my day.  I knew I needed to be in the Temple.  I got up and got ready and spent a few hours there.  It was exactly where I needed to be.

As I sat in the Celestial room, the scriptures fell open and therein, were words of comfort.  My daily bread.  The map for moving through this trial.

Behold, you have had many afflictions because of your family; nevertheless, I will bless you and your family, yea, your little ones; and the day cometh that they will believe and know the truth and be one with you in my church.

Therefore, thrust in your sickle with all your soul, and your sins are forgiven you, and you shall be laden with sheaves upon your back, for the laborer is worthy of his hire. Wherefore, your family shall live.

 And you shall strengthen them and prepare them against the time when they shall be gathered.
 Be patient in afflictions, revile not against those that revile. Govern your house in meekness, and be steadfast.
 10 Behold, I say unto you that you shall be a physician unto the church, but not unto the world, for they will not receive you.
 11 Go your way whithersoever I will, and it shall be given you by the Comforter what you shall do and whither you shall go.
 12 Pray always, lest you enter into temptation and lose your reward.
 13 Be faithful unto the end, and lo, I am with you. These words are not of man nor of men, but of me, even Jesus Christ, your Redeemer, by the will of the Father. Amen.
I don't know when we will get an appointment to see an Oncologist.  I don't even have a clue where that doctor will be or who it will be.  I do know, that if I am patient, it will become clear and I will know where Heavenly Father wants his sweet daughter.  In the meantime, I have a job to do.  I am the physician of my children's spirit.  We will remain faithful and steadfast and we will prepare together for whatever it is the future holds.

Shelbie is not doing well today.  Neither is Little Bear for that matter.  But Shelbie is struggling with anxiety as you can imagine.  I need to get work done in the worst way but I need to keep her mind busy as well.  She had photo shoot this morning and when I got home, I took the girls up to the college to read for 1/2 hour for the blind.  It was part of my 29 gifts project.  We were each put in a recording studio and we just read the newspaper for 30min.  They then become part of a radio broadcast that blind people are able to listen to.  I loved it, the girls...not so much.   It did help Shelbie though.  A little.

When we got home, she had a good little cry and I told her I had read a great scripture in the temple.  She said, "So, do you think I'm going to die?  Did you get the impression that I'm going to die?"

I got the impression that she is going to be okay but that we have to be patient.  We have to let the timing of God unfold for us instead of trying to steer the river.  She seemed to calm down and is resting now until her next photo shoot later today.

This morning, I felt the weight of my responsibility as a mother.  I felt a distinct feeling and reminder that Shelbie is not mine but HIS.  The decisions for her life and treatment are not mine to make, they are God's.  I am only here as the one entrusted to care for her and love her. I am a partner with God.  I covenanted with him to nurture her and teach her and journey with her here until we both make it home to Him.  It was almost as if the purpose to Little Bear coming, was to teach me that concept.  She isn't mine, she has a mother.  I can do all I can to love and care for her but she belongs to someone else.  Ultimately, her mother has the final say for where she goes to school, where she lives, what she does...

I did hear back from National Institute of Health this afternoon.  The nurse I have been working with there, over the past two decades, has forwarded Shelbie's records to the TOP DC doc in North America, Dr. Savage and her Clinical Physician Dr. Giri.  She may have a slight edge over Dr. Shimamura just because she can focus a little more just on DC.   I should hear back from them in the next couple of days.

Dr. Shimamura will call either today or tomorrow.  I have total and complete trust in each of these doctors.  I will wait and hear what they each have to say and we will watch this plan begin to unfold.

In the meantime...I will work to buoy up their spirits but as hopeful and promising as that sounds, I would be completely misleading you if I didn't clarify that there is a strong current of grief and sorrow with a heavy weight of anxiety dragging out behind me and I question if I have what I need to make this happen.  I don't feel strong or brave.


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Monday, January 25, 2016

Happy Moments Roll

Today has been a day of creation.  I have realized that we can't just assume the happy moments are going to happen on their own.  Not when we are waiting for life changing news.  We can sit around and get discouraged with the fact that we are worried and tired and losing our ever loving minds, or we can create our own happy moments.

So...that is what we have attempted to do.  It's not to say some angst and nail biting moments of spine tingling grief didn't have its place as well.  I had plenty of work to do and a big presentation so while I worked my fingers to the bone, the kids went into town to try out the Popeye's chicken and show Little Bear Hobby Lobby.  Spencer kept me updated with his hilarious commentary of the day on Snapchat.   He's a good sport to accompany three girls to a craft store! (Shelbie took her friend).  Poor Sam missed out on all the fun since he was in school.

This evening, we said goodbye to Spencer, had a good cry in my favorite crying spot, my closet, then decided to hit up the roller rink.   Shelbie, sadly, had other FHE plans at her friend's apartment.  Sam and Little Bear and I went.  I seriously considered bowing out because I haven't roller skated in 40 years and I'm old and every joint in my body is currently swollen and inflamed.  But...tonight was about creating fun so I put my big girl skates on and away we went.

Sam goes skating a lot.  I would say he has successfully channeled his inner 70's nerd when he is out there.  He's the hot shot skating backwards, crossing his legs, weaving in and out.   I was not a hot shot but I could hold my own at least.  I have to say, I sort of had a good time.  It was fun to watch Sam.

All in all...we survived today.  A day without any news to speak of.  Even our local oncologist didn't bother to call even though they have had the referral since Thursday.  In contrast, I made one phone call and sent one email and received a reply within a couple of hours.  I called our team of researchers at the National Institute of Health in Bethesda.  Due to the storm out there, only two people made it to work in the Hematology department.  He took my message and sent an email to the person I needed.  He thought her email at home might have been down so I didn't hear back but at least contact was made and the man was as helpful as he could be.

The email I sent was to our favorite Dr. Shimamura whom we saw at Seattle Children's but moved last Fall to Boston Children's.  I didn't have any of her contact information but the Boston Children's website has an option to send an email attachment right from the website.  Within 2 hours, Dr. S emailed me back.  All she said in return, to my explanation of what we were facing, was, "I"m so sorry! Can you please send me your number so I can talk to you in person?"I'm hoping she has some insight for us and guidance in case we are dealing with cancer.   DC kids can not usually tolerate the typical chemo drugs.  They have to have a reduced intensity to protect their other fragile organs.

It bugs me that a local doctor can't get back to me in three business days but a world renowned Hematologist who is head of Hematology at a major medical institution can get back to me in less than two hours.

Anyways, that is where we are at with things.  Still in limbo but the happy moments roll by and we hold on to those for as long as we can.  i'm in the last few days of my 29 gifts project.  I will post the updates on that tomorrow.  The one gift I have been waiting 25 days to do is happening tomorrow!   Stay tuned.


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Sunday, January 24, 2016

Added Upon

I can't remember when I had a day as hard as today.   I also can't remember a day as clear as today; a day when I could again see the workings of Heaven come full circle.

It seems like the Adversary really takes advantage of our extremities.  He can't just leave well enough alone and Sunday seems to be the day he just loves wrecking for me.

Spencer is sick, Shelbie was in pain and I just plain forgot to wake up Sam for church so Little Bear and I went on our own. I held it together fairly well through sacrament meeting but Relief Society, not so much.  I could feel my nerves just unraveling.  I ended up having to leave and go sit in the car to pull myself together.  I called my mom and she listened to me sob for 10 minutes.  She had to go to church so I sat there for the remaining hour reading conference talks and crying with my head on the steering wheel.  Just before the meetings ended, I put my make up back on and went back inside to wait for Little Bear.

She seemed to enjoy her classes but she said she wasn't feeling well.  She's had a sore throat for a couple of days.  When we got home, she went straight up to her room.  Shortly after I was home, my dad called.  He had a break between meetings and he wanted to remind me that I could do this.  I have always tried to do God's will and live by faith.  When I do, everything works out.  He shared some stories and scriptures with me which were very helpful.  He also reminded me that he and mom know exactly what this feels like.

Shortly after I was born, my mom was diagnosed with Non-Hodgkins Lymphoma.  The doctors didn't give her long to live.  He knows what it feels like to be in my shoes, waiting to hear the verdict on a loved one.  Waiting for surgeries and biopsy results.  He knows how hard it is to plan for the week let alone today.  My mom knows just what it feels like to be told you have a few months to live.  She is the only one who really has an inkling of what Shelbie is feeling.  I thought, isn't it amazing that 47 years later, it's finally clear why my mom and dad had to go through that.  I bet it never crossed their mind that that trial would someday bless their granddaughter.  How can people say that God is anything but great?

After I thought about that for awhile, I felt some peace.

A little after I talked to my dad, Shelbie came upstairs and completely fell to pieces.  She was angry and bitter and then just sad.  She was scared and confused and wanted a plan.  She wants answers right now.  I had to tell her that I wasn't just going to rush into anything but that we would wait upon the Lord to be directed.  She was angry with me and felt like I wasn't taking this seriously.

Spencer then reminded me of how sick he is feeling and that his tonsils are touching each other.  He thinks he needs to have them out.  Probably so.  They wanted to take them out long before his mission.

All in all...I fell apart.  There's been a lot of crying around here.  Somehow, none of this took place in the presence or even earshot of Little Bear.  However, I noticed on the coffee table, three cards addressed to me, Shelbie and Sam.  My card was to inform me that Little Bear doesn't want to be here anymore.  She is planning to leave next week.  My heart sunk even deeper!  We have made her part of our family.  She has such a special spirit and we want to be able to help her and bless her.  We have done our best to meet her needs but somehow, I feel like I failed her.  I feel like I let her doctors and her family down but most of all, her.  I let her down.  Just another moment to feel like our life is just too big for anyone.  I want to be helpful, yet our life that never slows down, gets in the way.  i don't understand why I felt so strongly to help her if it all just came down to two miserable weeks for her.

That was the last straw.

I asked Spencer for a blessing and peace was added upon.


There was a knock on the door.  A member from the Stake Relief Society was there.  She just wanted to check on us.  I told her about our latest drama just as Shelbie walked in.  She told Shelbie how sorry she was that life had to be so hard.  Shelbie's response blew me away..."Well, I read recently that Jesus Christ was way out of his comfort zone when he died for us so it only makes sense that I will be called to step outside of my comfort zone."

After I thought about that for a minute, peace was added upon.

I'm still just struggling.  I have no vision of what this week is going to look like.  All I can see is fatigue that overwhelms me.  I have no idea when we will get into Oncology.  I have no idea what comes next.

I do know this, I will be praying continuously for strength beyond my own.  For understanding, for wisdom, for blessings that I know we don't deserve.  I will be praying for my sweet Shelbie to find the reach of her Father in Heaven and hold on tight.  He has known her for hundreds of thousands of years and only he knows how to succor her.   In all of the ups and downs, the tears and breaking heart, I will feel the peace and love of my Father add upon the tender mercies that I know will come.

I know that when I can get out from under the grief and see things with my eternal, spiritual eyes, I will be amazed to see the wonders of God unfold.  I will see events fall into place for our good and what a sight that will be.

But for now...it's hard and it's sad.




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Saturday, January 23, 2016

A Mell of a Hess

Each morning when I went to check on my dear, sweet neighbor Carma, she would say, "Well, good morning!  I'm in a mell of a hess."  This was her answer in response to my question of how her night went.

This is pretty much the best way to describe the past 48 hours.  Actually, it's as if I can actually hear Carma saying that to me.

Here we are again in this very uncomfortable position of waiting and wondering.  I'm about ready to boycott the phrase, live in the moment, or, just take it one day at a time. Even I've tried to sell myself on this idea and it's stupid.  At least for now, I've decided it is stupid.  If I was some monk atop the  Himalayan mountains with nothing but a robe, some water crackers and all the time in the world to dedicate to prayer, scripture study and rest when needed, living in the moment would be no big deal.

I'm not a monk.  I am a mom who has a lot of people to care for and many responsibilities to put food on the table, clothes on our backs, a roof over our head and the bill collector off my front step.  Try as I might, I am trying to figure out how to keep all these plates spinning in the next few weeks as we sort things out.  I say weeks because it dawned on me early this morning that we are really backed into a corner. Lymphoma isn't an easy cancer to diagnose.  Add that to Dyskeratosis Congenita and we are truly, making history if cancer of any kind is what this ends up being for Shelbie.

I have tried really hard to keep my mind from going into dark, unproductive places.  For the most part, I guess I am doing okay but the grief and fear comes in waves and takes my breath away.  I have no idea what we are doing.  This is a place reserved for others, not me.  Not us.

Shelbie on the other hand, has been doing amazing!  I seriously look at her in awe.  She has been working and booking studio time.  In the past two days, she has had 5 photo shoots.  Despite being so scared, she is happy.  This morning as I was driving up to the house after cleaning, I saw her taking a cup of hot chocolate to the neighbor.  I asked her what she was doing and she replied that the dad had been standing outside for a long time trying to coax his autistic son inside.  I couldn't believe that she was worried about a grown man and not consumed in her own trials.

Tonight, she was laughing and goofing around with Spencer and she accidentally bit her tongue.  Without any warning, she fell to the floor and just sobbed.  She cried out, "I can't do this. I'm so overwhelmed." It's as if she was just waiting for some physically painful moment to arise so she could stretch her words out in front of us all to witness the emotional toll and pain this is taking on her.  Others in the room were saying, "Hey, it's just your tongue.  You're fine."  I knew that she was referring to something much bigger than her tongue.  I am trying really hard to let her feel these moments and let them cover her up in a tight embrace; to feel the darkness breathing down her neck and then to feel it dissipate and dissolve onto those witnessing her pain.  Onto me.  Only then, can she move on.

On the outside, I have to be strong and brave.  I have to smile and be happy. I have to carry us all, show them the way we will get through this but I am lost. I don't know the way through this.  On the inside I am the saddest person I have ever known.  In one moment, I think it's impossible that Shelbie has cancer.  In the next, I just pray it is a cancer that can be cured.  The moment after that, I remember how sick her lungs and heart are and I don't think we have a fighting chance. And then, I somehow forget that this is real life and everything seems status quo again.

The one constant is that I can't concentrate on anything.  Not one single thing for more than 5 minutes.  I have at least 12 hours of drafting that I am behind on from this past week plus a color board I was suppose to have delivered to the hospital on Friday morning and a presentation to an Optometrist on Monday which I haven't even started preparing yet. I can't even figure out how to move from one hour to the next.

I had posted in the DC group inquiring if anyone had experience with DC and cancer and if a light regimen of chemotherapy was needed etc.  Instead of answers in that regard, a conversation about quality versus quantity of life got underway.  I got spooked and retracted my question.  I am not interested in hearing conversations like that right now.  Tonight, I am beating myself up because the woman who started the well meant conversation lost her young son to DC just a few months ago.  I wasn't mean but I shut the comment down.  I shouldn't have done that and I regret it.

I'm frustrated and anxious and tired.  It has been a steady stream of serious problems since December of 2014.  The Fall was filled with 3 bone marrow biopsies, Salmonella, C-diff, a stroke, surgery and now this. We haven't had a break.  To make matters worse, we have no doctor we can turn to.  Whoever ends up being the Oncologist is not going to have a clue what DC is let alone how to manage that and whatever else we have going on.  There are no earthly answers.  None.  We have no choice but to live this one out by faith.




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Friday, January 22, 2016

I know God loves his children...

I think it was Nephi, in the Book of Mormon who said, "I know that he loveth his children, nevertheless, I do not know the meaning of all things."

I don't understand what is happening to us but I know that Heavenly Father loves us.  That's about all I know.  I know that he loves us enough to trust us with some big things.  I know that he loves me to send me three spirits who would fill my life with joy and love and meaning.  I know that he is continually orchestrating impossible things for my peace and happiness.

Yet, I don't know why he chose me to take care of these three beautiful spirits.  I don't know how we will do the things we have been called upon to do.  I don't know if I really can live by faith alone.  I don't know if I can watch one more day of suffering and sorrow in this world or in my children.  I don't know how we are going to make it.

We spent the morning at the hospital for Shelbie's CT Scan with contrast.  She was in good spirits considering she had to drink some horrible stuff the night before and the morning of.  She was joking with the hospital staff through the three failed IV starts.  Her eyes were bright and smiled even though it was not easy.

I had just enough time, after the test to get her and our new addition (Let's just call her...little bear for lack of a better name or using her real name) home and then myself back up to the hospital for a presentation to part of the hospital board on their new Infusion Therapy Space.  I needed to sell them on a completely new plan than what had already been approved.  The company doing the design didn't feel right about what they had designed in the space planning and called me in to consult.  I came up with a unique plan but since it was so different than mainstream hospital design, it potentially would be a hard sell.  I really wanted to please the company who asked me to step in.  I wanted them to look good so this was really important to me.

Before I made it up to the presentation, my car died.  Thankfully, it died in front of the repair place I would have taken it to anyways.  I called Shelbie and she managed to come and pick me up.  I drove her home and borrowed her car to get back up to the hospital for my presentation.  After that, I ran home with 5 minutes to spare for my next appointment to meet with Little Bear's mom and get her registered for online school.  That took two hours.  I ran to clean a house then back to get ready for my consultation with new clients at 6.   The kids and I were going to go out to grab some dinner for the one hour I had between appointments.

Just as we were leaving, the doctor called.

The news is not especially good.  Shelbie's abdomen is full of enlarged, abnormal lymph nodes and the entire cavity is full of inflammation.  He wants her to see Oncology ASAP.   This doesn't mean that she has cancer for certain.  It means, they don't know what to make of it.

Shelbie had joked that her back was probably fine but that they would find something else, even before she had the MRI on Wednesday.  She was right!  I too, feel certain that she had to fall down the basement stairs so that they could find this major problem.  In that regard, I feel hope.  Heavenly Father needed this to be discovered so it could be treated so that she can complete her mission here on earth.

I was asked by an architect to partner with him on a new design for the hospital.  I really enjoy working with him and we work so well together.  We have the same vision for design.  We have a mutual respect for each other's strengths and help each other in every possible way. So, when he said he was stumped and needed my help, it didn't seem possible because he is so amazing.  The highlight of the last week has been working for him.  Incidentally, I was only given 5 days to space plan this project, draw a 3D drawing with animations and video and have all the materials, finishes and fabrics selected.  I've never done a major project in 5 days.  Somehow, it fell into place so easily.  I looked at the space the first time and it was as if I knew exactly what to do. I could see it in my mind.  I know that God was designing that for me.  I can not take credit for any of it. Just another small, tender mercy.

We will see.  I don't yet understand the scope of what we may or may not be dealing with.  I don't understand why I had a confirmation to take Little Bear when we may not be able to manage that.  I don't know...I don't know if my poor heart will ever stop breaking.  I don't know when I am going to get one ounce of sleep.

Shelbie is so sad.  She is so scared.  When I told her, she fell into my arms, and like my little girl, I held her so tight and rocked her like any mother would.  In the sweetest moment, Sam stood up and wrapped his big strong arms around us both and the three of us stood there and cried.  And Cried.

Then, probably the most heart wrenching moment of all...Shelbie looked at me and burst into tears again and said, "I have to get out of here!  I can't stay here with you!  I can't stand to look at your face!" Then through more waves of sobbing said, "I can't leave you!  You are my best friend!  Please!! MOM, Please don't let me die."

And in case you wondered what that moment is like when cancer might be your new reality...This was that moment.   Sam drove her to her friend's while I made some quick calls before my meeting.

I called my Wasband. I called Spencer (Who by the way...was stranded on the mountain at Snowbird yesterday due to an avalanche...he's okay but couldn't get off the mountain from Wednesday afternoon until tonight-Thursday.  They arranged for him to be in a lodge with some other workers.  He's okay thank goodness...)  I called my parents and my siblings.

Ahh...It's been the longest night ever.  I called my good friend to see if she could stay with Shelbie for a couple of hours today while I run to get a root canal but Shelbie is planning to work. Lori was the Wish Granter for my kids and we are still close.  She is the kindest person I know.  I had another good friend ask if she could help me clean the office building tonight and I was so grateful for her thoughtfulness.  I was tempted to be strong and say no but I knew I needed her.  Not really to help me clean but to have a moment to fall apart with someone instead of being alone.  That was better than any other kind of service that could have been offered.

So, we have had a blessed day.  A day when the hand of God has been seen and his loving spirit felt.  We will wait anxiously to hear when we can see Oncology.  This is not going to be easy but come what may...I know that God loves his children!




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Wednesday, January 20, 2016

That moment

We have a lot of moments in this little family of ours.   Moments of joy.  Moments of peace.  Moments of pain.  Moments of sorrow and sadness.

Today, we had a moment. It was a moment we haven't had in a long time. A long time being maybe a few months.

We headed up to the hospital this morning for Shelbie's MRI.  On our way out, she kept 'joking' around saying she probably had cancer and wouldn't it be weird if it wasn't her back at all that was causing the pain...

Just an hour ago, our doctor called back and said that she needs to have further testing since they found an abnormal number of very large lymph nodes.  He was more worried about that than what is happening to her disks in her back.

I don't like that feeling of having the blood drain from your face and puddle at your feet.  I don't like that lighter than air feeling like you might tip over with the next shift in the air as someone walks past.  I don't like that feeling of trying to put on a brave face when all you can think about is crying.

We had just been laughing and joking around when the call came and there was no physical way I could keep up the facade.  She read my face.  She knew it wasn't good news.

It makes it that much harder because we have someone new in the house.  Someone who hasn't been around a lot of stuff like this.  Things have been pretty calm since she arrived but now, this.  I knew I needed to maintain myself not just for Shelbie but for her too.  These moments will be hard.  I didn't factor in what I would do when reality really did sink in.

It's been a whirlwind of a couple of weeks.  I haven't had a second to blog or worry about anything other than transitioning our new addition.  I am sadly behind on work and exhausted beyond measure.
In the next moment...I prayed for strength beyond what I have to figure out how I am going to get through all this.

The CT scan and contrast will take place in the morning.  We should have results by mid afternoon.  I spoke to the doctor about the lesions they found on her brain last month, the lymph nodes around her lungs in the spring and lymph nodes by her liver just before the lung abnormalities showed up.  It scares me to death but at the same time...maybe it is nothing.  It could be nothing.  It could very well be just reactive lymph nodes in response to other inflammation she is dealing with.

The next 24 hours will surely be scattered and nail biters.  I hope the moments pass fast.


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Saturday, January 16, 2016

Stupid is...and other things.

One would think that by the time you grow up, whenever that is, you have mastered the art of making good decisions.  I like to think I make good choices but apparently not.

Two days before Christmas, I broke a tooth.  It didn't hurt much and with the holidays, and my extreme aversion to dentists and spending thousands of dollars with basically nothing to show for it, because, let's face it, no one is looking closely at my molars, I ignored it.

When I felt a shadow of pain, I took some Advil and ignored it.

When the pain started waking me up at 3:45, I took some Advil and ignored it.

Now, that I can no longer eat solid food and the throbbing pain is creating a stroboscopic rhythm in my head, I really wish it was Friday and I could call a dentist to put me out of my misery.

But...it's Saturday!  I'm simmering in my own anger that I waited.  I'm pretty sure that a month ago, it might have been a simple procedure, now, it's going to require a few hours of drilling, several pairs of hands stuffed in my cheeks and more thousands of dollars than should be allowed by the law.

I have a major presentation to a hospital board early next week and with everything going on, I'm so far behind I'm afraid I can't fix it Monday or Tuesday and maybe not Wednesday either.

So...Stupid is as stupid does.

I really thought the back issues were in our rear view mirror but they are not.  Shelbie had her first day back at work yesterday since her fall down the stairs.  She was really doing better but after a four hour newborn, twin photo shoot, she was in really bad shape.  The people didn't even make it out to their car and she was rolling on the sofa in tears.  

Today, she was suppose to have a  wedding and reception to shoot but she couldn't even get out of bed.  She actually had to call me from her bedroom to get my attention.  I tried to help her up but clearly, it was getting bad.  Pain was down her legs and she was having a really hard time emptying her bladder.  With that, I took her in to the urgent care.

It turns out, we will not be able to avoid an MRI.  The disks that were damaged in the fall are so swollen and bulging that they are putting pressure on the nerves around the bladder and those going down her legs.  They gave her an injection of Toradol to try and get the extreme pain under control but that didn't last long.  We have tried just about everything to keep the pain at bay and nothing is working.  She had 30 minutes this morning, to try to find another photographer to cover the wedding and reception.

On top of all this, she had her transfusion this week and all that nonsense is starting up!  Ahhh...never a dull moment.  Never.



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Friday, January 15, 2016

The Week in Review

Well, we've had a week with our new family arrangement.  It is much harder than I thought it would be.  I know it is probably the hardest for her.

We are working through the hard things, trying to communicate.  At first, I tried to give her a lot of leeway with things but then realized that it wasn't enough structure so we spent the morning trying to get things on track.  It went well.  I still believe that a little love and understanding goes a long way.

I would not be able to do what she has done.  There is no way I could move in with total strangers and express the things I needed.  She is doing so well in that regard.  She seems to like my kids and my kids like her. I know that as each day passes, we will find our groove.

For now, I realize that the medical stuff is going to be tricky to maneuver.  Yesterday we were stuck at the hospital for over 12 hours and that is rough on us, let alone someone who isn't accustomed to watching someone else suffer.  I have also found that I have had to let a lot of things go so I can dedicate more time and attention to my kids and 'S'.  (our new addition)  This is a huge adjustment for all of us, including my kids.

All and all, despite the extra work it's been, I don't have any regrets.  I can see so many ways that this undertaking will be a blessing to us and I hope that it will, in the end, be a blessing to her and her family.

I gave her permission to do anything to her room that she wanted.  Tonight, we will start working on that.  I will post pics when it's done but I can tell you it's going to include newspaper, ombre walls, teal paint and about a 1/2 a ton of gold glitter!  It's going to be a sparkly night!

Pictures to come...


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Wednesday, January 13, 2016

29 Gifts Continues

Life is busy, but in a good way!  My 29 gifts project is underway and I'm so happy that there have been some people who have followed me on Instagram and are joining in with their own challenge!  It truly changes things.  Here is the latest and greatest in my journey...

Hauled in a street worth of garbage cans on garbage day!  

Every young girl just needs a little bucket of sunshine.  Especially, little girls who aren't quite sure where they belong in the world.  This gift is somehow, going to keep giving.  I have bigger plans for the bucket of sunshine in days to come. 

Day 6 was probably my favorite gift so far.  It was one that just happened, not something I had planned.  I was checking out at Walmart with a bunch of random stuff and the cashier was this older lady, very sweet.  She commented on just about every item I bought and made every effort possible to be engaging and endearing.  There were 8 people behind me but she didn't seem rushed or harried. You would have thought we were best friends.

As she tore the receipt from the machine, she carefully wrote her name across the top and said, "Ma'am, if you fill out this survey and mention my name, then I get a treat!"
"Really?  You get a treat!"
"Yes!  I love treats!!  Just fill it out if you think I did a good job!"
"You did a great job and I promise I will fill it out for you!"
"You really will?"  She was so excited!  I don't think I have seen any adult get so excited about receiving a treat.  Then I got all excited!
I went straight home and filled out the survey.  It's not very often you feel that happy to help someone.
Day 6 was for Pattie

Hosted a girls night with some fun teenagers!

This was another spur of the moment gift.  We were at a comedy show on Saturday night and a kid there was begging his friends for a $1 so he could get some popcorn.  No one would help the guy out so I threw him a couple of bucks.  He ended up standing with us and visited for about 15 minutes.  Nice kid...turns out he was part of the comedy show! 

There is an organization called Knit-A-Square.  They accept 8x8 knit or crocheted squares that are then sewn into blankets for orphaned children with AIDS. 

Who Doesn't like free candy?  I don't care who you are, finding a quarter in a candy machine is a good day. 

Last year, I listened to a TED talk about a girl who had moved to New York and was so homesick and depressed, she started writing letters and sending them to complete strangers.  Now, she has an organization called, More Love Letters. I decided to write one myself and leave it at Maverick for a random stranger to find!

I have some big plans for upcoming gifts but some of them will take some co-ordination so I hope they work out.  As is customary, I have a few that I really want to do but if I see an opportunity elsewhere, then I will do that instead.  So, each day is a new adventure...we'll see what comes next.

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Tuesday, January 12, 2016

The Price We Pay

Everything in life comes at a cost.  We aren't always prepared to pay the price of something we want.  We stretch our budgets or better yet, buy it on credit and worry about how to make up the cost at some later date.  Nowadays, it's far easier to just buy now and pay later, rather than make the sacrifices needed to save for a season and buy it when we have the funds.

The price we pay to come to know our God and Savior is very much the same.  We can either go without that relationship and experience or we can pay the price and that is going to mean sacrifice. There is no credit system in the process of knowing God.  If you want it, you will sacrifice for it.  If you don't, you won't.  In a lot of ways, you pay now and receive the blessings later.  I guess it's more like an investment rather than an impulse purchase.

I am finding that this year is much different than years past.  The mood at home is different. Experiences have come, challenges are arising that are pushing us ever closer to our Savior and in the direction of home. This comes with a price to pay; sacrifices to make.  I feel a looming sense that time is running out for us to become all that we need to become. Heavenly Father has definitely got big plans for us this year and I'm certain they won't be easy plans.  Already, I feel the expense of sacrifice to accomplish what he needs us to do. At the same time, I can feel the mercy He has offered to help us shoulder the weight as well.

Strange things are happening.  An orchestration of people and events are lining up in mysterious ways.  It's going to be interesting to see what happens next in our little family.

From a DC standpoint, we are in a holding pattern for now.  The kids are all status quo.  Shelbie is still having some residual problem from her fall.  It occurred to me that because of her hypermobile joints, this is to be expected so I think we will hold off on the MRI for another week or so.  Maybe she just needs a little more time than the average guy.  Somehow, Spencer is managing or maybe has just grown accustomed to feeling poorly and Sam is just pretty happy.  

I am still battling fatigue and pain that never seems to end.  I'm not sure what is going on because usually I can get on top of it pretty fast with nutrition but that is not the case now. Nevertheless, I am happy for the respite the kids have had.
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Friday, January 8, 2016

But...you said!

This might be the hardest post I've written in a long time.  I have waffled about including this part of my life on the blog and decided that I would.  But, it's scary.  It hasn't been an easy week.  As news of our changes has been making it's way around the rumor mill, I have been offered a never ending commentary of thoughts, the majority not very kind or loving, let alone supportive.   I guess I know where I really stand with some people.

Our life is changing.  Our family is changing and we are embarking on a whole new chapter of life.  This is one of those life changing moments when nothing will ever be the same after tomorrow.

If you've been following our family, this blog, you will be somewhat familiar with my project, 29 gifts.  Last year, for a total stranger, I gave a small gift.  Nothing really.  It was given from my heart to a young woman who I had only briefly heard about a millisecond of her life.  This past Christmas, again, I gave a small gift to the same young woman who I still knew nothing about but something reminded me about her from the previous year and I couldn't stop thinking about her.  We have never met.  I know hardly anything about her.

This past week, I received a call.  It was from a social worker in another State.  In an effort to keep certain parts of this story sacred and respect her privacy, some details will be left out.  The call was to ask if I would take this girl in, the stranger I sent a small, inconsequential Christmas gift to and by some fluke, became the recipient of a  29 gift one year ago...this week, I think!

The good thing about a phone call is that the person on the other end doesn't see the blood drain from your face.  They don't notice that your legs are wobbly and about to give out.  They don't see that the phone trembles in your hand.  They don't even perceive the quiver in your voice because they don't know me either.  They don't notice the beads of sweat that band together across your hairline.  I'm not even sure they noticed my stammering.

Within seconds, 977 reasons of why I couldn't do this raced through my head.  I'm a single mom.  I'm a tired single mom.  I'm a tired, single, poor mom.  I'm a tired, single, poor, spread thin mom.  Oh, did I mention I have three kids of my own in bad shape right now?  I'm not exactly sure what I actually said to the woman on the other end.  It's hard now to remember what was happening in my head and what was coming out of my mouth! I may have uttered some of my concerns and reasons for why this was a horrible, idea but I'm honestly not sure.  We are our own broken souls hanging by a thread, what a great idea, add another broken soul and see how far any of us get.

In the most clear and audible tone, I heard a voice in my kitchen where I stood say, "But, you said!"  That's all... You said.

I knew immediately what that meant.  I am a member of the Church of Jesus Christ of Latter-Day Saints.  The foundation of my faith is family.  Eternal family. It's charity.  It's love of God. I have made covenants with my Father in Heaven.  I said I would consecrate everything I have to build up the kingdom, to build up families!  To build up each other; to build strong spirits.  I promised to bear one another's burdens.  I promised that I would clothe the naked and feed the hungry.  I promised to do it to the least of these.  Then the line from Matthew 25:35- I was a stranger, and ye took me in.

As I heard all my excuses, ticker tape through my head, ready to formulate on my tongue in a firm, "NO".  I thought what a hypocrite I was.  I preach of these things...yet, can't even live it?  To say no would feel like nothing more than lip service to the very God who gave ME life, a pretty good life compared to hers.  It would be turning my back on my Savior Jesus Christ who was once drenched in my suffering; my sins.

So, without further dismay...I said 'Yes'.  I said yes to something that terrifies me.

I was given the opportunity to talk to this sweet young woman twice this week.  We asked each other questions of trivial matters and hard questions.  As each day this week has moved on, I have felt more peace.

I don't know how we are going to do this.  In fact, the 977 points of refusal have now turned into 977 questions of 'how'?  This is a leap of faith for me, for my kids, for her, for her family.

In everyone's life, there is bitter and there is sweet.  Monday night when I told my kids, I was amazed at them.  Sam offered the dinner prayer and without coaching, prayed intently for a girl he doesn't even know.  I have heard the pleadings of Shelbie in prayer for this girl's safety.  I myself have taken moments to pray for all of us!

Most of all, I love what Spencer said when I told him, "So, she has problems?"
"Yes.  Life has been hard and life has been unkind to her."
"So, in other words, she's a misfit like us?"
"What do you mean?"
"She doesn't fit in anywhere, she doesn't belong in this world; like us?"
"Yes, I guess you could look at it like that. Ya, we are misfits.  We have a hard time fitting in, I guess I never stopped to think of it in those terms."
"Then yes, we have to do it.  We have to love her.  We can love her...how hard is that?"

And so tomorrow...we will meet one brave and courageous young woman.  What if she is the little tattered angel sent from Heaven to save US?  What if this isn't about her at all?

With faith...I said yes.  With faith, we are taking one tiny step into a big blackness and I'm not sure what comes next.

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Laboratory for the living

This has been a whirlwind of a week, I mean, a little more whirlish than normal.

First, I wanted to provide an update on the kids.  Especially a Salmonella update.

Spencer seems to have cleared all bacteria that plagued him for weeks. Not a day goes by that I don't feel gratitude that he survived that ordeal.  I know to some, that seems odd to say but for someone without a working immune system to get such a toxic bacteria, his recovery is nothing short of a miracle.  Now, he is facing the fallout and working on healing and gaining weight.   The Salmonella bacteria destroys the part of the gut that processes carbohydrates.  He was already having issues with proteins and was on a water soluble diet due to the progression of his disease, so now, we are in a bind.  Of course, he is back in Utah, working and so I can only trust that is managing to find something that settles in his stomach.  From my last report, he has gained 1 pound!  I'm not sure that is real weight, maybe a water shift but we'll see.

For Spencer, finding his way in this adult world is challenging.  It's been hard for him to admit that there are some things he just can't do anymore.  I appreciate his effort to be patient with himself as he figures things out.

Shelbie is not bouncing back from her back injury earlier this week.  Yesterday, I tried taking her to the city so we could run some errands and just trying to walk and stand, she went numb from the waist down her legs.  The doctor said if this ever happened, they would need to MRI her and find out what those disks are doing.  I suspect we will be having to get to this next week.

Sam is pretty healthy.  I notice he is extremely tired these days but other than that, healthy!  He is in that very hard stage of life when high school is ending and what comes next has yet to be determined.  It hit me yesterday as I went to pay for his cap and gown and get his tassle that this is it for us!  How did time get away from me like that?

The word for the week is HARD.

For me, it's been a hard week.  It's been hard to focus and hard to get things done at work. I've had to have some hard conversations and share more of my life with people than I have ever wanted to.  I was grilled about how I mother, how I handle certain issues that come up with teens, how we manage school and teenage jobs and discipline.  I always feel like we are totally normal, everyday people.  I don't stray very far into the world so I never pay attention to how different we really are until you have to start explaining yourself to total strangers.

It's then, that I realize we are so weird.  We stand in a much different place than most of the world. Dyskeratosis Congenita and the fact that my kids are existing on borrowed time, or so it feels changes how we deal with life.  Things like school and jobs have very little significance to me.  Following along the acceptable timeline of life is not for us.  We have had to improvise on everything, even how the kids have obtained an education. When someone suggests I need to be more rigid and set up boundaries, I don't even know what that would look like.

Sometimes, it is just easier to retreat than to defend our way of life.  Ya, we have lived a different kind of life but all things considered, we've done pretty good for ourselves.  Our home is a laboratory where we are learning to live, not waiting to die.  We experiment and what works for one, doesn't work for another.  The rules change.  We change.  We are figuring this out as we go.  I find that by the time you worry about how to do life right, you're doing it...it's done.

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Thursday, January 7, 2016

Map making

Some time ago, I was reading an article about the map makers of days gone by.  Specifically, a map that was printed on the skin of a calf back in the 13th Century. It charts the Mediterranean with such accuracy that it can be used by ships today to navigate the waters with nearly exact precision.  This early map has become one of the greatest mysteries as well.  The map maker responsible for this, left very few clues as to how he could draw something with such accuracy.

The curator for the Library of Congress, John Hessler said this of the map. “Even with all the information he had — every sailor’s notebook, every description in every journal — I wouldn’t know how to make the map he made,”

As it turns out... after many years of research and study,a theory developed.  The century old map maker used Butterflies. An unlikely tool, yet the secret in his precision and skill.  In a process called morphometrics, they discovered a precise relationship between the spots on Butterfly wings and their geographic location.

It was a fascinating article.  Something so seemingly unrelated to map making was actually the key to such accuracy and allowed for people to find their way.

I remembered this story earlier this week.  There have been a series of events that have led up to an interesting turn of events this week.  As is usually the case, we rarely consider the things that happen to us on a daily basis as anything out of the ordinary.  We don't typically size up the day and appreciate how it fits into a bigger picture, an eternal picture; another mark on the maps we are creating for ourselves as we make our way back to our Father in Heaven.

I believe that we are map makers and like the butterflies from the 13th Century, it's the little, inconsequential things in the day, the whisperings of Heaven, that stretches out the path before us.  Unless we are watching with our spiritual eyes, it's easy to miss.

I've been connecting the dots of our life this past year, the Interstates and the detours.  I can look back and see how they intertwine and carry us along in seemingly disconnected and disjointed ways, yet with a course of precision.

Like the winds that catch a sail and blow a ship to it's destination of home, we are being blown on a similar course home.  At times, those winds can feel overpowering, overwhelming and overdone. But nevertheless, I can't deny, we are exactly where we need to be.

A couple of weeks ago, I got a surprising call to tell me that my volunteer time at the temple to the play the organ was being cut in half.  I was shocked.  I love playing in the temple.  I love my time there.  They have a shortage of organ players so it made no sense to me that they were giving half of my time to someone else when they could have put them in an empty slot.  Still, I didn't question them and consented to giving up three of my Saturdays a month to someone else.  I wondered though, why my schedule was being cleared.

I have lived through enough to know, that everything DOES happen for a reason; the good and the bad.  So, I have been sitting back with a watchful eye to see what was coming next.

The dynamics of our family will be changing very soon.  I will need more time in my days to receive the blessing that is coming.   I can see that Heaven is preparing a way and we are recording these strategic moves on our little map of life.

Tonight, a coming together occurred quite out of the blue.  Let's call it a rest stop.  A blessing of peace and kindness shown by two beautiful sisters who showed up at my house.  Perhaps their purpose was for nothing more than to assure me that yes, we are on the right track and though there are a million reasons to question and wonder why things are happening the way they are...we only need one answer to remind us that we are on the map, on track and a little closer to home.  We will watch as our own, unlikely butterfly, the things that really have no correlation or sensibility, charts the course of our days.

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Tuesday, January 5, 2016

The want of many

Well, it is that time of year again.  My third annual 29 gifts project has begun.  Every year, I think I'm too busy to do it again, yet there is no question that it is something I need. It changes my life.  It sets the new year on a course of gratitude.

I'm already on day 4 of the gifts project.  I've been posting my efforts on Instagram.  I want to make something clear...I do not do this experiment in giving, to draw attention to myself.  I don't post my experiences and gifts because I think I'm all that or something amazing.  I do it, because I have a deep passion about where we are going in life.  Where we are all going in life.

We spend so much time anymore, to ourselves.  We take a few minutes, more than we should, liking a Facebook post, as if a 'thumbs' up is going to change things for good or for bad.  We plead on our social pages for prayers, we air our troubles and we dutifully comment to others that a prayer will be said, a thought will be given.  We share cryptic messages, afraid to really be seen or heaven forbid, appear less than perfect.  We share our joys, and triumphs and we give the universal sign that our nearest and dearest are liked, at least.  We do all this and end the day with impostor feelings that we really connected with people, but did we?

There is so much want in the world, at least in my world.  People want to be noticed, really noticed.  People want to connect with someone for real. People want to be seen, appreciated, loved.  People want a sense of belonging, even before they want food, clothing or shelter.  We have lost our sense of security, belonging and even a place of self.  Among all this want is suffering.  When we don't have the basics of life, we suffer.

Not only do I see this in the world around me but I feel some of these things myself. We can either let our trials and hardships make us bitter, or we can let them make us better.  I know the past year has been hard.  I have spent a great deal of time trying to figure things out and complaining but at the same time, pursuing happiness that can feel so fleeting at times.  I will go to great lengths, make whatever sacrifice is necessary to teach my kids that happiness, no matter what is happening at home, comes from giving yourself to others.  You give away, the very thing you need yourself.

So, for me, 29 gifts isn't about attention or some grand scheme, it's simply about trying to give to someone, love that is deficient in all of us, no matter who you are.  Feeling loved, remembered, considered, in real terms is a balm of peace and the spirit of happiness and it is in great shortage these days.  Loneliness is becoming chronic, thanks in part to the smoke and mirrors of social media.

It constantly amazes me that people make comments like, "I wish I was more like you."  or "You are amazing."  I'm not amazing...there is nothing amazing or super human about giving one hour of your time to watch a kid so the parents can have a break.  I don't have any special skill sets for babysitting, I'm not the baby whisperer...I'm nothing.  I'm you, I'm everyone else you meet along the path of life. I'm just trying to find happiness and peace myself.  I'm trying to be the disciple of Christ I signed up to be.  I'm trying to save myself, my kids and maybe someone else who is a recipient of love.  Anyone can do this.  I'm nothing special.  Giving gets us beyond ourselves, over ourselves; it leverages us from a mire of problems.

Each year, I extend a challenge to anyone who wants to do this with me or do start their own challenge.  Filling the want of many starts with one little loving gesture at a time.  I post these ideas to inspire you!  Do something...one little thing.  Make a difference.  I promise, it will change your life. It will displace the feelings of stress, overwhelm, even despair in your own heart.

Sam helping me assemble blessing bags for Hope Lodge.  A place for people receiving cancer treatment in Utah to stay and be taken care of. 

This was day one...I made several gratitude journals to give away

I offered to babysit for a family who has an autistic son.  

The finished blessing bags for Hope Lodge. 


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Monday, January 4, 2016

We're off to a good start...

Not really.  2016 is off to a crazy start.

Sam has been having GI trouble since Friday.  I'm not sure if his ulcerative colitis is acting up again or what but he has been pretty uncomfortable with some very odd symptoms, including a GI bleed.  He hasn't been bad enough to take to the ER and since it has been a holiday weekend, we have just been keeping an eye on it.  Things aren't worse, but they aren't better either.

It isn't the first time this sort of thing has happened.   Although, one time, he had similar symptoms and for three months, they couldn't determine what was happening so they finally did an MRI.  It showed his small intestine being turned back inside itself.  He had emergency surgery and when they opened him up, they found that his GI tract was full of enlarged lymph nodes.  They assumed that the wall of the intestine got caught up on a lymph node and as the intestine contracts to move waste through, it just kept pulling itself inside out.  They had to do some reconstruction.  Twice since then, this has happened but resolved on its own.  If we are in that pattern again, I am holding out hope that it will resolve with a little more time.

Shelbie made it home from California last night.  She wasn't even home 2 hours and fell down the unfinished basement stairs.  She was carrying a bowl of hot soup and glass of water so she didn't use her hands to try to 'fall' better than she did.  She went down on her back and slid about 5 stairs, all the way to the bottom.  The near boiling soup burned her hands.  Immediately, her back started swelling up and a line of broken blood vessels appeared across the width of her back where the initial impact was on the edge of the wood step.   It was about 20 minutes before Sam and I could get her off the stairs and out of the soup and water so we could assess the situation.  She could hardly put any weight on her legs and couldn't straighten her back.

I took her to the ER because she has osteopenia  and can never seem to keep her Vitamin D levels up to normal so I was really worried she had fractured something.

Thankfully, there wasn't a fracture but there is severe soft tissue damage, severe ligament damage in her lower back, and the muscles took a beating as well.  In addition, she has at least 2 bulging disks.  It's too soon to tell if there is permanent damage to her disks.  She will be on bed rest for the next few days and then we'll see where things are at.  When we left the hospital late last night, she still couldn't bear weight on her legs very well or straighten her back.

In other news...I started my traditional 29 Gifts project on Saturday!  Without fail, I start it and then things get crazy around here for awhile.  Still, it's going well and I'm excited for the activities I have planned.  My next post will be more on this project and a challenge to start your own 29 gifts project!


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