Sunday, April 30, 2017

Through the trees

It's been a week of deep thinking, new challenges, a few good things and some not good things.

Friday was another milestone of birthdays for me.   I really didn't want to celebrate or even acknowledge my birthday.  Birthdays have become a reminder that another year has come and gone and I have nothing to show for any progress I've made in life.  Still trying to find the forest as I make my way through all these trees!  Most days, I still feel like I'm 10  years old and wonder why in the world I've been left with so much responsibility.  Other days, I feel like I'm 80 years old and wonder why in the world I've been left with so much responsibility...I'm too old to be working the way I do!

At any rate...it was just another day.  Well, not exactly.  We got word late on Thursday night that our 'Santa' Mike who passed away two years ago, had a son who was expected to pass on Friday.  He was their only son and was born with Downs Syndrome.  I remember how Mike would take such tender care of his son.  Mikey had to have surgery to remove some necrotic tissue but in the process became septic.  Mid week, the doctors let the family know that there was nothing more they could do so they gathered on Friday to say goodbye.

All day, I was emotional at the thought of this sweet family saying another hard goodbye but at the same time, I felt so much clarity about death and Heaven.  I could see so clearly Mike being in that hospital room with his family, comforting them and ready to receive Mikey back to Heaven.  In my mind, I saw spirits of love mingled with all the love on this side of Heaven.  I saw that young man surrounded with loving care.  I imagined how his mom must feel to be passing their son off to her husband who has been watching over them on the other side of Heaven.  It was a sweet thought, but hard to say the least.  Shelbie was going to go down to the hospital to capture their goodbyes in photographs but they decided to have her at the funeral instead, later this week.

I spent a few hours with May at the mental hospital again on Saturday.  It was a hard visit.  She is really not happy there and she doesn't understand why she was committed.  To her, Schizophrenia is her way of life, she doesn't even see herself as sick.  Living in her car makes her happy.  She doesn't understand why they won't leave her alone and let her live her life.  She was also upset with me that I didn't get very far in breaking her out of there.  That broke my heart but she has renewed hope in my efforts this week.   She thinks I work at the hospital  now and that frustrated her that I hadn't come to sneak her the master key to unlock the locked doors so she could sneak out.

May is such a sweet and tender spirit.  It's extremely hard to believe that at 86 years old, you could be arrested and committed.  Most 86 year olds I know, are settled nicely into an assisted living home, not walking laps at a mental institution. She has walked 28 miles!!  Down two short corridors.  For every 10 miles, they give her a reward.  This week, she got a stress ball and 5 phony dollars to 'spend' at the Canteen but became upset when she had to pay $1.50 for one bite size of a Milky Way bar.  When she reaches 35 miles, she gets a pair of sunglasses.  In her mind, the people who get to 35 miles seemed to go home right after getting their sunglasses so she thinks that's the whole point to being there- just get the 35 miles, collect your sunglasses and voila!...you get to go home. She doesn't realize that those people who made their 35 miles were just shuffling along for months!!! Not two weeks!  The dilemma is, she has no home and now she has no car and they have taken away her drivers license.  Just imagine that frustration and pain to feel like your entire world has been taken away and you have no idea what you did wrong?

I left with a promise to return with Milky Way bars and a pair of reading glasses and some brochures for assisted living places.  She plans to reach the 35 mile mark by Monday (tomorrow) so that she can get her sunglasses and leave.  The cellulitis in her leg was much worse on Saturday and she had a flare in her Scabies.

It's hard with each passing week of difficulty to see beyond all these trees!  It's so easy to get lost and turned around and strain to see the big picture.  I had a bit of a wake up call on Thursday night and into Friday morning with the kids.  They all have their struggles in trying to balance their health, or lack thereof with what they can do in life.  It's so hard for them when they literally can't travel the usual and expected path in life.  I haven't had time to be as present in helping them and lets be honest, I'm dealing with my own demons of undetermined expectations of life and just getting through the day is about all I can handle.  The wake up call came at about 11:30 pm when we were all arguing and Shelbie said, "How can you sit there and preach to us about how much God loves us and how we need to have hope yet you have lost your faith too!  You are the one I hold on to.  You are always strong and happy and I know if you have faith then I can have faith too because I trust you and I need you to be strong for me!  For us but I don't even know you anymore!"

Whoa...I was quick to clarify that I have not lost my faith.  Not even a bit of it.  There is a big difference between losing your faith and being completely exhausted and lost.  I don't understand why we struggle when others are blessed to find a swift end to their struggling.  I don't really understand the whys of it all but I'm willing to hang in there until I find those answers.

Wow!  A long post I didn't plan on. At any rate, we continue to wend our way through this forest of trees even if it means circling back a million times on a lost trail.

Ohhh...but in good news, Sam was hired to be an instructor and coach at the new trampoline gym coming to town next month.  He is so happy!  I haven't seen Sam so incredibly happy in such a long time!!  He started contacting the owners over a month ago and kept calling every week until they interviewed him Thursday.   He will primarily be over the Ninja Warrior course and the head Parkour Coach as well.  I'm really proud of him.  It's so nice to see him full of energy at this new adventure.

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Wednesday, April 26, 2017

Medical Updates

Two weeks ago, the Neurology team at University of Utah met to discuss our case.  It was comprised of Neurologists who specialize in various areas from Epilepsy to Multiple Sclerosis.  From that meeting, they made a plan of what to do next for Shelbie.

We have an appointment with the Autonomic Nervous System specialists.  When the nurse called this week to set that up, he said, "It's really important we get this set up sooner than later."  So, I suggested that we would be down there in two weeks and maybe we could fit it in then.  His reply was, "Or, I have an opening the first week in September."

Huh?!  Sooner than later and September...makes no sense to me.  He went on to explain that is how far out they are scheduling.   In the meantime though, they have reason to think that she has a problem with the hormone Catecholamine.  This is responsible for regulating the central nervous system, heart rate, blood pressure, motor control, cognition, emotion and memory...long term memory.   It can also be responsible for the formation of brain tumors, both cancerous and non cancerous.  It's a complicated and long blood test so we will do that part in two weeks when we go for our big appointments.   At that time, we will start the testing for Duke University as well as Harvard/Boston Children's.  So...big things coming up for us.

We've had an array of problems over the past couple of weeks.  Shelbie and Spencer were down watching a late movie last week and Shelbie fell asleep.  At one point, she stopped breathing and sat straight up and couldn't get any oxygen at all.  This happens a lot more than it ever should but it was the first time Spencer witnessed it.  He was still watching the movie.  She struggled for almost a minute without getting much air.  After Spencer was done joking about it the next morning, he got serious and really thought he was going to watch her die before his eyes. They are scary episodes because she is wide awake, even trying to walk but unable to breathe at all and nothing we do seems to help.

Spencer developed this huge lump on his arm and his go to method of dealing with new things is to joke that he's dying of cancer which is no joke but it's how we manage around here...bad humor.  It was growing exponentially and I was really worried.  He finally consented to a doctor visit because his hand was swelling up and numb.  They were concerned about a blood clot but ultrasounds came back normal so he was diagnosed with severe tendonitis even though it's his left hand and he has done nothing to explain tendonitis.

Sam is the healthiest of the bunch right now but he has some broken blood vessels in his eye which is gross and not getting better so I think a trip to the ophthalmologist is in the works. He is in his second semester and decided on a major which blew my mind...He is an Art major with an emphasis on 3D art.  He's also taking some graphic design classes which he is enjoying.   We had a good talk last night and I think he is going to drop his credit load down because he's just having a bit of a hard time right now in other areas and he needs some space to breathe right now.  Somehow, we will work out the money part because the Pell Grant is only for a full load.

And then, there is just the usual stuff that never goes away...the GI issues, weight loss.  It feels weird not going to Salt Lake every week but nice.   Weird because I think there should be more people than me being worried about the continuing fall and decline in their health.  But, such is life.


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Sunday, April 23, 2017

A Reason To Stand- Fighting For ME

So, part 1 of my emotionally charged weekend actually happened on Friday.  I attended A Reason To Stand Conference here in town.  It was a gathering of trauma survivors; trauma of all sorts from murder to addictions.

Two weeks ago, I saw on Facebook that Ashlee Birk was bringing her seminar to town.  In a very hasty moment, I bought a ticket.  I don't know why I did that.  It was completely out of character for me, knowing I would sit in a large gathering of people to listen to sad, but empowering stories...alone.


Ashlee Birk made National Headlines when her story appeared on shows like Fox News and Dateline.  You can read about her story HERE.  Her high powered attorney husband in Meridian, Idaho had an affair with his Paralegal and in a sudden turn of events, was shot in a Walgreen's parking lot by his Mistress' husband.  When the police knocked on Ashlee's door, it was the first she knew that her husband was being unfaithful.  She had a new baby and 4 other children.  That all happened just two years ago.  Now, she travels around speaking about how to handle trauma, rise above it and move forward with Faith in God.  Ashlee was an amazing speaker and I loved her grit, humor and honesty.

She brought with her 4 other trauma survivors to share their stories too.

Cindy Beck- the owner of a local store Lulu Bella Boutique.  She spoke of being adopted, date raped that resulted in a pregnancy and then losing two husbands, one to a drowning and the next to brain cancer.

Bre Lasley- she, along with Elizabeth Smart (who was abducted from her family home as a young girl to become a sex slave) started an organization called Fight Like Girls.  You need to read her story HERE .  She was attacked by a man who came through her bedroom window with the intent to kill her and rape her.  Her story is still so extremely fresh, just over a year and talk about bravery!  I was so moved by her and the fact that she finds the courage to keep going.

Ashley Sullenger- another local woman who's 2 year old daughter drowned in a canal while being taken care of by family.  I loved her honesty about that incident but I loved that she shared how she moves through the grief that still comes after 7 years.

Emily Meyers- she writes at the blog The Freckled Fox.  She was a few months pregnant when her husband of just 7 years was diagnosed with an aggressive form of Melanoma.  He suffered for 15 months before passing away.  Shortly after, through no act of her own, was re-acquainted with an old high school sweetheart.  They married.  Her story was about the trauma of losing a husband, the difficulties in caring for him and their 5 children all under the age of 5 and marrying so soon after he passed and how she has dealt with the harsh judgments of others.

It was hard walking in all alone.  Everyone there was in groups, surrounded by friends, as women mostly do.  Surprisingly, I only saw two people I knew.  One was a client from out of town and the other was a nurse from the hospital.  The conference was from 4-9:30pm, so a long time.

Two ladies came in and sat down beside me.  She immediately turned to me and held out her hand to introduce herself.  She asked my name and if I had children.  I told her three and then she asked what my husband did for a living in a small town?  (She was from out of town)  I said, "Well, I don't have a husband, I'm a single mom."  Her eyes lit up and she said, "OH...so are you involved with anyone?  Dating? Beca..."  I was quick to cut her right off!!
"I'm not involved, not dating and not interested in dating."  I tried not to snap at her.
"Ahh...well, good to know."  I tried to smooth over that awkward moment by turning the conversation back to her life.  She was a really nice lady.

At one point in the conference, Ashlee had us pair up and stare into each other's eyes for 1 minute, just 'witnessing' them.  No words, just looking at each other.  Of course we all felt stupid but when the snickering ended... people got serious...and it was hard!  I couldn't do it!  I couldn't let myself be 'seen'.  I kept looking away to break the gaze but the woman beside me who I was sharing this moment with, let a tear escape her eye and she put her arm around me and with her eyes only...saw the pain I keep hidden away.  

The biggest thing I learned was that it's hard to be honest about our suffering, our weakness, our shortcomings, our grief and the way it can hold on to us, even for years.  Each of these women had moments of some serious crying and I was amazed at their vulnerability. At the end, Ashlee brought in three more women for a Q and A.  They represented the trauma of being married to a sex addict, a mother of a son entrenched in drug addiction, a young wife and mother whose husband died recently of a drug overdose.  It was an amazing evening that really left me speechless.  Never underestimate the trials that can come!

Most of the speakers talked about how you need space to work through grief.  You never get over it...just work through it.  They all spoke of how the Adversary will take advantage of your fatigue and grief and make you feel all sorts of horrible things. I could relate to everything and everyone on so many levels.    The thing that surprised me most is that none of these ladies felt like they are on the other side of suffering...they are all in the midst of it and they live through the angry, sad, scared days the best they can and breathe through the easier days.

Ashlee started the conference telling about her little girl.  Last year, Ashlee bought a Halloween costume for her daughter, it was a Rainbow Dash costume.  She got home and handed it to her daughter and said, "Here, you get to be Rainbow Dash for Halloween."  The little girl didn't want to be that, she wanted to be something else, something else she had been planning on.  When Halloween came and they went out to get free candy, a lady at one house said to the girl, "Oh look, you're Rainbow Dash!"  The little girl responded..."I didn't want to be this, SHE made me."  and she pointed to her mom.  Before long, the little girl didn't even want to be there anymore.  She didn't even want the free candy because she was so upset that her costume wasn't what she wanted.

Ashlee said that sometimes, God sends us something we didn't plan on and we don't appreciate.  How do we handle that?  Make the best of it and take the free candy, or  get angry and stomp home until we get what we want?

I loved that analogy.   It was a good night, a strong night.  It pushed so many buttons, triggered so many things and left me a wreck but I was so glad I went.  When the Q&A started, I couldn't manage all the emotions colliding in my head and heart so I sat there just crying my eyes out.  I could feel people staring at me but whatever...I think one girl sitting nearby felt pretty awkward with my crying alone, because when they ended the conference for dessert and the meet and greet, she stopped in front of me and said, "I think you're really rocking those overalls!"  She made me smile.





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Saturday, April 22, 2017

Unknown

It has been an emotional weekend!  Holy Smokes.  I need a vacation from being sensitive.

It's been months since I have been able to find my homeless friend May.

Monday, I had this overwhelming feeling that she was in trouble and it dawned on me that I should call the apartment where she was last known to be.  They didn't answer.  They didn't answer my call all week!  Finally, yesterday (Friday) they called me back.  I was afraid that they wouldn't give me any information about May since I wasn't family so I lied!  I told them she was my great Aunt.  The manager hummed and hawed and finally gave the phone to a man who wondered what I wanted with her.  After some convincing, he told me that she had been arrested and taken to the State Mental Hospital.



I was so sad!  I immediately called the State Hospital and asked if I could speak to her but of course, they can't tell me if she is there or not...and, I couldn't remember her first, legal name.  She has several aliases so I was asking for Betsy or May.  Finally, I just said, "She is an older lady with long grey and brown hair and we call her May.  If you see a patient like that, can you give her my name and number and tell her to call me?

I tried to let it go since I had a conference to attend within the hour.  Just as the meeting started, I received an Unknown call...and then another...and then another.  10 total and I was getting very anxious.  Unknown calls are only ever from hospitals or police.  I was sitting in the front row and didn't dare leave.  As soon as there was a break, I ran out to listen to the 5 voice messages that were left.  It was May!!

She was very upset and said, "Kathy!  I love you!  I couldn't remember your phone number to let you know where they took me.  I was just praying that somehow you would find me!  Please come and rescue me!  I need to be rescued.  I can't stay here.  Please will you come now.  Please call me back!"  My heart was in pieces.

I was able to reach her by phone and she was nearly in a panic when she heard my voice.  I calmed her down and promised that I would see her Saturday morning as soon as visiting hours started.  I asked her if she wanted me to bring her anything, like a treat!  "Oh, you are an Angel.  Yes, I would like for you to bring me a treat!"
"Okay.  What kind of a treat would you like?" I asked.
"A car!  I need a car so I can escape from here.  They are holding me for a ransom.  Please bring a car and money to get me back." She said.
"I'll see what I can do May but I can't make any promises.  Maybe we should check with your doctor to make sure they will let you have a car."

That seemed to make sense to her and she agreed.

Sometimes, in our promise to bear one another's burdens, we travel to lost and forgotten places on the fringes of reality, where we have a holy responsibility to behold the children of God who are the precious souvenirs of a hard world.  There is much to learned about suffering beyond the pale. 


I had all sorts of anxiety driving down to the mental hospital an hour away.  I didn't think I could handle that adventure today and I was right!  It was tough.  Every door locked behind me.  I was escorted through the halls.  I had to leave my purse, phone, keys locked up at the front desk.  Before they opened the door, the staff member escorting me said,  "You know about her skin condition right?  Just don't be alarmed, we are treating it.  She has Scabies."

As soon as I walked through the final locked doors, she saw me and ran down the long corridor and gave me a big hug.  She was covered in sores.  Big painful looking, inflamed sores from her face to her feet.  I was surprised that I wasn't feeling germaphobic.  Scabies are a bad deal.  I came to find out she had lice too.

We sat and talked for well over an hour while she ate her lunch.  She was arrested on her way to my house three weeks ago.  I had told her many times that I didn't want her sleeping on the streets or in a secluded area and if she needed a safe place to rest, she could do so in my driveway.  She told the officer she was going to her friend's house to spend the night  but she has several warrants out for her arrest.  They took her to the jail and booked her.  She was there for over a week and then the Judge ordered a psychiatric evaluation and she was transported to the State Mental Hospital.  She is being treated for her Schizophrenia.  She was booked in there...Monday!  The day I knew she needed me.

"Why did you come all the way down here to see me?" She asked.
"That's what friends do.  They stay close by in the good times and the bad.  I won't forget you."
"Oh please don't.  I feel forgotten." Probably one of the most lucid things I've heard her say...and then she asked about the kids, calling them each by name.

The State Mental Hospital is a very difficult place to be.  So many people who are just shells of what once was.  They shuffle the halls with blank and empty stares and break up the monotony with screams directed at the air they breathe.   When May arrived  this week, they gave her a pedometer because all she does is walk.  She has walked over 15 miles on just two corridors.

As I left, I was escorted out again, through the locked doors, back to the front desk.  I was asked to fill out a form about how I thought she was doing.  The man at the desk asked if it was my first time to the hospital and I said 'Yes.'

"It can be a scary place.  This is the forgotten place.  The place of the unknown souls.  Last week the BYU-I University choir came to sing for Easter.  Music filled these halls and it was a beautiful sound. No one remembers to help the mentally ill.  The government doesn't care that these are real people who have needs.  People take donations to the homeless shelters, women shelters, sick children, poor and needy but no one ever helps these people out."

I was already on the verge of tears after seeing the condition of May and his candid talk shattered my heart.  I wanted to hug all those people I saw today.

As I drove home, May called me three times to thank me for coming to see her and asked if I would come back because she felt so alone.

I think we are all Unknown at times.  We feel forgotten, alone and often we face problems and struggles that are Unknown to anyone but you and God.  Witness someone's life this week.  Let them see you, seeing them.  That was my lesson learned this weekend.




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Wednesday, April 19, 2017

We need a Disco Ball

Last year, or maybe it was the year before, I heard a talk by Billy Ward.  He asked three questions...

Who is your Sun?  Who in your life reminds you of the sun?  They show up everyday no matter what.  They bring you light and warm up your soul.

Who is your Lighthouse?  Who guides you home...helps you on your path?

Who is your Disco Ball?  Who is that person in your life who bounces light and energy off them.  They show up with energy and encourage you to live life with vigor, fun, and humor. They teach you to enjoy the journey.

I thought about this again when we had a little struggle this past weekend.  I use to be all of these to my kids.  My kids use to be some of these things to me. As I listened to each of them talk about how tired and sick they feel...I wished we had a disco ball. I wished I was that disco ball that I once was.  I get so frustrated with myself!

Oh well, without a doubt, day by day we are working things out.  We may not be in Dancing Queen mode but even shuffling can be a dance of sorts.  As long as we keep up with the beat, the rhythm of life, we are bound to hear the music better in some not so distant day right?




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Tuesday, April 18, 2017

When Opportunity Knocks

Last week, out of the blue, the Architect Firm I use to work for 8 years ago called and asked me to come in for a meeting.  I didn't think much about it.  They have called me to collaborate on projects from time to time before.

This time though, they asked me to come back!  Full time.

Never in a million years, did I expect this to happen.  I would do some design, managing the specification and submittal process, payroll and other office duties.  I enjoyed my time there before the economy tanked.  I spent the weekend thinking about the offer.

In some ways, it would have simplified my life tremendously.   I would go from 6 part time jobs to one full time job.  I have forgotten what it was like to go to work at 8 and come home at 5 and that was that.

It was nice to dream but that's all it could ever be.   When I talked to them, I had forgotten, for just a minute that my life is different now.  Even though it seems like nothing has changed in 8 years, the reality is, everything has changed.

It was hard to shut the door on the possibilities of working one job for someone else, especially an architectural firm!

So, I will keep working myself senseless.  I am adding Nursing to my job description as I let our home health nurse go today.  It's too expensive and this week, we start our increased dose of plasma which means it's going to take over 7 hours to infuse.

I'm not sure what was harder, having to make the call this morning to thank them for the offer or facing the reality of my situation in trying to provide for my family in the exhausted state I find myself in.

Either way, sometimes opportunities can be nothing more than a teasing from the world beyond where I live.


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Sunday, April 16, 2017

Easter

I haven't spent as much time as I should have this week, thinking about the life of Christ.  But this weekend, my favorite thoughts on the resurrection of Christ have stuck with me.

I find it interesting that in the week leading up to Christ's crucifixion he was close to his disciples and those who loved him were close to him.  He laid out the plan to them at various times.   He told them of his impending death but also that he would be raised on the third day.  He didn't explain this just once but more than once.  Though they were taught, they didn't understand.

From the tragedy on Friday, to the miracle on Sunday, they forgot the promises Christ had made, except Mary.  She stayed close to Jesus even after his death.  She was the first to find the empty tomb.  John didn't leave like the other disciples had either.  He was one of Jesus' most faithful disciples and friends yet he didn't understand Christ when he had said he would be raised on the third day.  Even still, he stuck around.  John was always close to Jesus even when he didn't understand.

I like this Easter thought because I wish I was more like John.  I wish that when I am stuck in the 'Saturday's' of life, the days of not quite tragedy but short on miracles, that I stayed close to Christ.  I wish I didn't always flee like the other disciples did.   I wish I could always remember that promises, the miracles.  I wish I always had understanding of the promises.  I wish I was more faithful even when I don't understand.  Instead, I become short on energy, direction and even hope.  I can see no meaningful way to the miracles that I know are waiting...If I just wait, believe, hope and stay close.

Last year, I read a book by Max Lucado called He Chose the Nails.  In a chapter, he talks about a night he and his wife had reservations to eat at a fancy country club.  They arrived at their reserved time but since he wasn't wearing a jacket, they were turned away.  He begged and pleaded but the Host was not going to bend the rules.  Max asked if there was any other way around the rule.  The man left for a moment and returned from a back room with a lime green jacket that was too small for Max.  He put it on anyways, and they were led to a table.  He goes on to say...

      "The seats at God's table are not available for the sloppy. But who among us is anything but? Unkempt morality.  Untidy truth.  Careless with people.  Our moral clothing is in disarray.  Yes, the standard for sitting at God's table is high, but the love of God for his children is higher.  So, he offers a gift.  Not a lime colored jacket but a robe.  A seamless robe.  Not a garment pulled out of a cloakroom but a robe worn by his Son, Jesus."

       I love that quote.  I love as he goes on to explain that Jesus wore a seamless robe that was woven in one piece from top to bottom.  In Jewish tradition, a mother would make a seamless robe for her son as a departure gift when he left home.  Even Christ's clothing symbolized his character; he was perfect...seamless.

      During Gethsemane, Christ removed that perfect covering, seamless from His perfect Heaven to our filthy Earth, gave it lovingly to us and traded it for our patched together, tattered and torn, sin stained remnants.  He did this because he loves us.  His love changes us if we let it.

    Even though I missed most of this week in a spiritual sense,  I often think of this.  I reminded my kids last night as we drove home late that we need to stick around to see what's coming next...the miracles that is.  We know and understand, more than the disciples did so God is counting on us to wait upon his plans.  So wait we will...that doesn't mean it will be easy but our anxious waiting will be understood at least by one who has lived this before.  What blessings and miracles come because of this Easter day.

     



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Tuesday, April 11, 2017

Obscure Sorrows

I sat on the bench like I usually do on Saturday mornings, the organ music was slow and quiet.  I think that's why I like playing there; its just slow and quiet.  I set the pace.  I mostly keep my eye on the music for fear of messing up but I did notice a couple walk in.  I had known them a few years ago, not well, but enough.  Enough to notice each other and say Hi.  I had heard recently that she had breast cancer.  She's likely a good 10 years younger than me.  Her red wig was striking, her eyebrows carefully in place and by all accounts, she made cancer look good.  

I had the strangest feeling I've never had before.  She has no idea, that somehow, I know all about her recent strife with cancer.  I have heard how it struck, how she deals; I know more than a distant acquaintance like me should know.   She is living this complicated, unfair, story that went off in a way she scarcely expected.  For a moment, I felt like I was an extra in her 3rd act; the struggle.  And, I wondered if she felt angry sometimes.  I wondered if she was tired of the fight.  I wondered if the wig was because she wanted to wear it or she had to wear it...part of the lies we tell ourselves that we are okay even though maybe we aren't.  I wondered if she was okay.  

And then, I wondered if I was okay?  I wondered if she secretly knew my personal battle.  If she felt the same obscure sorrow for me, that I feel for her? 

And then, I looked around the room that was quiet and filled with a pretend peace.  I mean it was real but inside the hearts of many who resided on the pews was something of 'otherness' mingled with peace.   It was strange to see both, encompassing that moment.

It's not often we stop and see the complexities of those around us, how it straggles out behind them, around them, through them, even in and around us, the innocent bystander who wakes to see it happen. 

And then, it was 11 and my time was done.  I closed my book of music, and left that vivid moment behind. I left her to continue on with her story, without me but the sorrow remained all day and into the next. 
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Sunday, April 9, 2017

Not every mom does this

It's an ongoing battle around here to find a middle ground when living with adult children, when all you know is mothering, rules, curfews, blah, blah, blah. It's hard to know when to let them practice a little trial and error and when to flat out say 'No'.

Shelbie thinks she has a blood clot in her leg again.  It's in the same place as the one last year and it's red, hot and painful.  Spencer spent the night before last doing jumping jacks and push ups in the middle of the night because his heart rate was so slow, down in the low 30's and high 20's.  He didn't know what else to do so he tried a little cardio to get it up.  It went from super low to the extreme end of fast and he couldn't get it to slow down so it was a rough night.  He has been having more struggles like this lately with his heart.

But...that's not going to stop the two of them from a road trip to Oregon.  Shelbie's friend needed a ride back home after being here at school so a couple of months ago, Shelbie signed up to drive her. She recruited Spencer and another friend.  They left this morning at 6 am...Spencer who's heart can't keep a rhythm and Shelbie who has all sorts of problems this week and repeat symptoms of what led to a stroke last year...makes sense that they should take a 13 hour road trip!  (Insert eye rolling)

Last night as they were packing, we reviewed all the meds they had packed, the ones they take and the 'what if' ones...what if this happens....what if that happens...  We double checked that they had insurance cards, and contact numbers and on and on. Then I found myself reviewing with the two friends what to do if one of my kids goes down!

It was a ridiculous conversation to be having.  Not every mom has to talk to the friends about strokes, heart attacks, CPR, Emergency room visits, and then finish the conversation with..."So who is driving first?"  I'm pretty sure those two girls wish they had a Plan B for getting home.

 I wonder what it would be like to just simply stand at the door, wave goodbye, blow kisses and say, "Have a great time!"   Instead, I stand at the door with anxiety spewing out my sleepless eyes, prayer pouring from my heart and mutter the words...Please don't die this week, I can't afford to ship your bodies home!"  (I didn't really say that, at least that they could hear) and then 10 minutes later, sent out the group text..."Are you there yet?" I'm a tired, crazy mom.

So, anxiety is a little high and then I found out I had to play the organ for church today and I hate that.  In fact, I curse the day I let my grandma teach me to play.  I had to have a little procedure done on my wrist a couple of days ago so between the ongoing pain, playing in front of 500 people, anxiety, worry...I'm getting a decent cardio workout with my racing heart.  I have mastered the art of working out without actually working out.  When people ask me how I stay so thin, I just let them know I can't reveal my secrets.

Sam and his yellow eyes wanted to go with them and he could have but he couldn't chip in the gas money and van rental so instead he asked where I was taking him for Spring Break..."Well Sam, we are having a Staycation right  here in Crazytown!"

It never gets easy to leave it alone and leave them in God's hands.  It's always the worthwhile goal to not worry but let's get real!


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Saturday, April 8, 2017

First the Famine

Nearly two months we go without any direction or follow up from our doctors and now, my phone won't stop ringing.

And...in keeping with my usual response, I feel relieved, scared, stupid, anxious and all sorts of everything.

Today, our Hematologist called a couple of times.  I missed the call both times because I was out on a job site.  It wasn't until late afternoon when I was able to call him back.  He has been a busy man.

He had a conference call with Dr. Giri at the NIH.  He had a conference call with Dr. Ghadir at Texas Children's, and a conference call with Dr. Shimamura at Boston Children's.  Those doctors brought up with Adenosine Deaminase Deficiency 2 and feel that it would be prudent to do the genetic testing for that rare disease.  The only problem is, there is only one doctor at one lab who as the ability to test for this disease.

So...our doctor had a conference call with him, Dr. Hershfield from Duke University.  Dr. Shami suggested I read this doctors website so I did.  He's the guy we want if Shelbie has ADA.  Man, he has spent his entire career studying the biochemical mechanisms of the immune system.  He said he would be willing to test the kids in his lab.

Dr. Shimamura has offered to start the whole genome testing on our family in her lab at Harvard.  The advantage to using her lab is that she runs our blood herself.  At NIH we are in a que and still waiting. She is also going to proceed with more mitochondrial deficiency testing.

I trust Dr. Shami completely.  I honestly don't know how he had so much time to give us.  I am humbled by his efforts.  I asked him what his thoughts were after talking to all these doctors and he agrees that the Adenosine Deaminase is a possibility and we should move ahead on that.  He is perplexed and worried about the brain situation that keeps coming up.

So, the plan is that the first week in May, we will go down to Huntsman and they will draw blood and get everything Boston and Duke need to begin the testing and then we wait...  The boys will do additional testing with our Immunologist at the U while we are down there.

I feel almost embarrassed.  I have friends in my 'chronic' circle who can't even get one simple test approved.  They even fight to get the attention of any doctor let alone the caliber of scientists we have now.  It's actually hard to believe; rare just like the disease.  These are huge blessings even though answers won't be found immediately because, these things take time.

It's important we find out what is going on with Shelbie.  Tonight, she came home from her friend's graduation and showed me a lump in her leg.  It's nearly the size of a golf ball.  Her body is just filling up with these granulomas and at some point, they are going to be big problems so, we need to find a way to slow the disease process or put it into remission.   I fear that Sam is headed in that same direction since he has one in his lungs and a suspicious tumor in his brain.  Who knows what kind of shape Spencer's brain is in.

Tonight, the boys were home so we went out to grab some dinner.  I haven't seen Sam all week and the first thing I noticed were his yellow eyes.  I immediately felt sick.  Sam's liver enzymes were really high last summer but they resolved by October when he had his bone marrow biopsy.  He's never had yellow eyes before so I'm a little worried.  Okay, let's just be honest...I'm a lot worried.  I wanted to leave the restaurant and take him right over to the urgent care for a blood test.  Instead...we stayed and I did what I do so well...pretend that everything is wonderful.  We'll see how he is doing Monday.

From no contact with doctors to all this...famine, feast...we are either starving and emaciated or stuffed and bloated.  Tonight...we are full!!




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Wednesday, April 5, 2017

The Weight of Things

A pound of feathers or a pound of rocks?  That always use to confuse me.  Of course the pound of feathers!  But a pound is a pound.

You don't realize the weight you carry until it's gone.  And when it's gone, even for one hour, the gravity of it all is profound and piercing.

This morning, I opened my email just as a message from Dr. Shimamura came through.  I was shocked!  I didn't think I would ever hear from her again and since she is primarily concerned with pediatrics, we moved on when she left Seattle for Boston. We emailed back and forth for an hour!  I was in tears!  She wants to jump back in to researching what we can do for Shelbie especially, but the boys too, given their new heart and brain problems.  She said that she has some new ideas.

As I sat at my desk in shock and awe I was overcome with the weight of so many things!  Sometimes, you don't feel the weight of something until its gone.

I was overcome that God has been good to us. I see everyday how sick my kids are but He sees them with a purpose and has things for them to yet accomplish. That weighs a lot! Still, its heavy to think that even with God...life is hard!!

 As I listed in my mind, the incredibly smart and caring doctors we have, it's staggering. In the world of bone marrow failure, these doctors I rub shoulders with are revered and at the top of the 'Who's Who' in medicine.  Not many families who live with rare, orphan diseases have this many doctors concerned for them. It's not just about the big name doctors but the validation that comes because they see the problems we are facing. They take them seriously.  So often, I have been accused of making it all up, finding mountains in mole hills, taking things to extremes but the doctors see everything firsthand.  This thought alone is staggering and weighs heavy on my mind...we owe a lot to so many people.

Have you ever done something incredibly exerting... Took every ounce of energy, strength and endurance you had? Remember when you were able to take a break and catch your breath only to have to jump right back in to the hard things?  It is almost impossible to mentally work yourself back up, not to mention the physical strain.  It's a costly and weighty undertaking.  This morning with Dr. Shimamura's phone call and quite honestly, our Neuro-immunologist's messages yesterday, I felt a little break, a physical lifting of a burden I carry.  That feeling didn't last long and now, I pick it back up to carry on.  It's heavy.  I'm tired.

The more I think about the day, the more I realize that it's not about having another scientist on board.  It's being witnessed, acknowledged, validated and feeling something familiar in Dr. Shimamura's words that seemed like a life preserver, pulling us out from the shadowy isolation we have been feeling.  



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Tuesday, April 4, 2017

The most dangerous time

We have been trailing on a rocky road this year.  Just plain hard. Hard to keep going, hard to want to keep going.  In all the waiting I have done the past couple of months, I have had some time to think about life's great mysteries...

Like...

Why is it when I get what I want I feel this overwhelming dread?

Why is it that I have more energy and function better when I am flooded with chaos?

Does everything happen for a reason...or not?

I won't tackle them all in this post but FYI...The Germans have a word to describe the overwhelming feeling of dread when you get what you want...it's called Zielschmerz.  I felt that after a series of emails from our doctor this afternoon, outlining a more precise plan for Shelbie and her thoughts about our situation.  Why is getting what you want so hard???

Anyways, I want to write about crisis and the most dangerous time.  They seem one and the same but they are very different moments.

I've been studying about crisis.  I know, I'm strange and when do I have time to study about crisis anyways since I always seem to be dwelling there?  Well, somehow, I made time.  I found a presentation by David Allen on productivity but he says this about crisis.
         
               "Crisis can produce a kind of calm because it demands it.  It makes us meaningfully                                                        engaged.  Crisis keeps us in the moment."

I think that is a crucial point of understanding.  This is how I feel when I am facing an influx in health problems with the kids.  I run in a dozen different directions but somehow, everything gets done.  I'm not saying there isn't a price to be paid, because it takes a toll but there is a curious kind of energy. I think that is why I have a love hate relationship with crisis.

So, what is the most dangerous time?  The time after the crisis.  I have always known this but could never explain why.   There has been no shortage of times when I have been in critical health situations with the kids.  In those times, I managed remarkably well under the circumstances.  Afterwards was a different story.  There were times I could barely function.  Times when I suffered with a great deal of anxiety and depression which made no sense considering the crisis was over. They were better.

The crisis robs us of security, safety, belonging, even identity.  When things calm down and there is nothing to keep our mind engage, we begin to naturally deal with feelings and emotions we couldn't make space or time for in middle of thick things.  There's a different kind of overwhelm.

It finally makes so much sense to me.  So, we are in the most dangerous time...We've had a respite of sorts, not from health problems but from the weekly drives to Salt Lake. There's been nothing acute and terrifying.  Everyday, something is going awry with the kids though.  Shelbie got a new virus and she has been up and down again for two weeks.  Spencer has been having his near fainting spells again only he doesn't recover from them like he use to.  He is pretty out of it for an entire day now. The most recent episode was yesterday. He refuses to record more than 7 events on his loop recorder in his heart because then they make him download the computer and that seems to be a hassle to him so he won't but the real story is, he is having way more than 7 events with his heart every day.

Now there is nothing to keep me in the moment.  I feel a sort of shock when I look back at just the last 6 months and take in what we have endured.  I feel a huge overwhelm at what's coming next.  To look ahead is anxiety.  To look back is depression.  To stay present...is impossible!! At least for me.  The other dread is that I have to face the bills, the pressures of work and money.

I wonder if people who don't deal with chronic illness feel these same things?  I have no idea what is normal anymore but sometimes, I wonder and sometimes, I envy those I perceive to enjoy the fruits of normal.

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The Squeaky Wheel

I hate having to be the squeaky wheel but I had no choice.

I have been extremely patient, even to a fault with the doctors in Utah.  It's been 7 weeks since we got the scan results on Shelbie's brain.  I didn't freak out, I waited to hear from our doctor but never heard.  After a couple of weeks, I sent an email.  A few days later, a message in MyChart.  The following week, I left a voicemail...twice.  I have made contact with them multiple times.

Finally, this morning, I pressed the issue.  I called and didn't just let them send me to some random nurse's voicemail.  I have been so anxious about this, I could hardly keep myself composed as I talked to the switchboard person.  I didn't want to get angry but I did make it clear that the way we have been handled has not been appropriate.  It's not fair to send someone a report stating that your child has a massive granuloma in their brain without some plan for follow up.  The girl was really good and promised that if I didn't get a response within 30 minutes, I was to call back.

Sure enough, I got a call back from our Doctor's nurse and she was rude!  I think I'm going to file a complaint.  She accused me of not being patient.  Really?  7 weeks of waiting isn't patient?  I was speechless and it's probably a good thing.

Finally, our doctor emailed me back.  She was apologetic and had assumed that this wasn't the first time I had heard about the mass in her brain!  Are you kidding me?  I am so disengaged with medicine these days.  I'm over their lack of communication.  She said she has a meeting planned for next week with a team of immunologists, neurologists and seizure specialists to discuss Shelbie's case.  That is good but it's more waiting.   Hopefully by then, I will have calmed down enough I can have a meaningful conversation and make a plan.


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