Tuesday, January 31, 2017

Kids Say the Darndest Things

When is it not crazy around here?

We've had some things come up that have brought to the surface a few raw feelings.  Tonight at dinner, we got on the topic of marriage and family and children. Shelbie had some passionate feelings on the topic.  She worries that she will never marry or have children.

When she dates, things go great for awhile, until she gets sick, or they find out she is sick and they run hard and fast; as far away as their little legs will carry them. It's sad really.

"It's not fair because I would be such a great mother!" She said.

I'm really good and coming up with all sorts of consolation prizes that I think should somehow make up for the deficits she is feeling.  "You get to hold and capture the essence of so many newborn babies. Their mothers are so appreciative of the way you get them to be quiet and still and calm. That's such a great gift.  You get to love them and send them home!"

"It's not even the same.  I want to love them the way you got to love us.  I want to spend every day with them, teaching them, playing with them.  I want to be there when they throw a tantrum and hug them and love them. When they screw up and when they rebel and when they hate the world and God and I can love them through that and teach them and be there for them and watch my love for them deepen in ways that it can only deepen when you suffer through things like that with them!  I want to have someone I can hold on to!  I want to watch them learn and grow through all the hard things like you get to do!"

I'm pretty sure, I have never thought of motherhood in this way before.  EVER!  I'm pretty sure I will count my blessings a little differently after tonight.  I never really took note of what a privilege those crazy times are and I will never take another struggle for granted.

But that's hard.  Cause right now, I have three in a struggle and it's not easy but I can see that it is always worth it.

I never knew how deeply saddened she was with her situation in life.

Last night, in a few moments I had with Spencer, I asked him, "When were you the happiest in life?" (Cause he's far from happy right now)

His answer was not surprising..."My mission.  I loved my life.  I loved being full of love and serving.  I loved that everyday had purpose.  I loved that I didn't have to worry about bills and jobs and all that."

"So, what would make you happy now?" I asked.
"I just want to live in a van, by myself, driving around the country."  was his shocking reply.

We backed out of the van purchase last weekend.  But now, he's full of regret so he's doing his best to come up with the money to buy it.  (I secretly hope he doesn't get it...I don't want him living in a van in the middle of Kingdom Come! Do you blame me?)  But, I do want him to find that kind of happiness again...a van is only temporary, a smiley face band-aid that will 'fall off' eventually.

Ahhh...life has some interesting perspectives!  


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Monday, January 30, 2017

On the other side

Finally!  I think Shelbie has rounded the corner on the flu.  Today, she had a pretty good day, even had a couple of big photo shoots and a service project for the Women's Shelter.

We successfully avoided the rest of the household getting influenza too!  I'm so glad, it makes me feel not so crazy for the amount of bleach I've been going through in the name of survival, or the lemon juice and apple cider vinegar.  I drank entire bottle of vinegar over the course of the week and started my second bottle today.  It's disgusting but I swear it helps keep the bugs away.

It has been a very busy day, not just at work but at home too.  The kids all had a crazy, disappointing day on Sunday and the fallout of what transpired has carried over to today.  For about two hours today, I had at least 7 text message conversations going at once, and several of them were my family.  It felt like I was putting out fires all day long.  I feel  accomplished that I didn't get any text messages mixed up and text the wrong person.

They finished the work on the front of my house this morning and it looks so good!  It looks even better to me knowing that the wall is no longer wet between the studs. Now I have to paint my ratchet front door.  It's awful.  I was tempted to paint it on Saturday while the tarp and heat was still up but I had no steam after all the cleaning I did.  I will post a picture or two tomorrow.


 


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Saturday, January 28, 2017

Random Saturday

Whenever I feel like we are careening out of control, I declutter and clean.  By midnight on Friday, I had 1/3 of my living room filled with stuff I didn't want.  Today, I made a couple of trips to the thrift store and the dump.

Ahhh, I feel like I lost 20 pounds.

When Sam came home after his first week at school a while back, he said, "Wow, my room looks the same."

"What did you think your room would look like?"  I asked.

"Clean."

Turkey!  He came home this morning with his laundry and was a bit despaired.  He said, "Mom, you gotta help me with the smell in my apartment!  I can't stand it anymore! Do we have any Ozium?"

He went on to explain that there is no garbage disposal in the kitchen sink but food gets crammed down there anyways.  He said he keeps putting the little metal drains in that are meant to catch bits of food but his roommates take them out.  He's about fed up.  And while he was on his rant about boys and their level of cleanliness, he asked for a mop and some better cleaning supplies.  "I've gotta get that place cleaned up properly!"  he said.

I laughed and laughed.  The kid who could never see the floor of his bedroom for 18 years is now very concerned about the cleanliness of his apartment!  At least I know he actually learned something by dragging him to cleaning jobs his whole life and he actually does care about keeping things cleaned.  Funny boy.

I've become seriously obsessed with germs...I've taken germ control to a whole new level.  So, all morning, I have been bleaching every single surface of my house, again.  Every. Surface.  The fabric surfaces got a spray down with Lysol.  I've decided Bleach is my new signature scent.  If I could find a way to drink it, I would.  I probably need therapy. On so many levels... Anyways...how about this sweet ride?

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Spencer's new ride...not the exact one. His has more orange spots of rust! 😁
                       
Spencer is in Utah on a guys snowmobiling trip.  The last I heard from him on Thursday was that he had bought a 1985 Vanagon from his friend.  He sent me a picture.  I told him he has to keep it parked at his dad's house!  I don't want the value of my home deteriorating.  Ha ha. He is beyond excited to sleep in it.  I'm so proud of this kid...aspiring to be homeless.  Actually, I am just jealous.  Maybe there's room for me too!  I am going to surprise him and sew some gingham curtains for it!  LOL.

These kids of mine!

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Thursday, January 26, 2017

Currencies of life

It's been an interesting week in this country, in my life...in the lives of people around me.

Sometimes, I see things from the fringes of the hustle. The world is in a mad hurry to get somewhere and I am just stuck on the edge, watching it all unfold.

This week, on long drives to Utah, late nights in the hospital, middle of nights not sleeping, I have thought about the currencies of this life I know.  What is the currency of happiness?  The currency of joy?  The currency of hope?  Success?  One could go on and on.

As I caught glimpses of the 'March of Madness' last week in DC and around the country...(I know it wasn't called that but it seemed like a bunch of angry women with some disorganized thoughts.)  I really didn't get it at all, nor did I really try to understand the crusade. It seemed like one, unbecoming, ungracious, expletive and any worthwhile message was lost in the foul cries of anger.  I have nothing against women marching, I knew a few who attended,  nothing against those women wanting to have 'FUNding' for Planned Parenthood, having their lady parts treated as equals...to what I'm not sure, but because it's not my Currency.  These aren't the things that bring value to my life.

But, in my own restricted world, I've been challenged in a different sort of way.  My kids.  In a subtle way, they have questioned why our lives continue to be so difficult financially speaking.   I think it's because they are facing a little crisis of their own personal economy; what can they do to bring value and purpose to their life when they are fighting a losing battle against chronic health conditions?  They feel the fear that comes when being in bed for three weeks straight, has become a reality that was never dreamed of.  They are wondering, in their own way, what the currencies of value are in their own lives.

So, quite unexpectedly, I found myself in a march of sorts to justify to my kids that things are just as they should be in my life...I mean, for the most part.  Generally speaking.  I hadn't realized that they sometimes see me as one who is throwing away some talents and skills and taking small, meaningless jobs like janitorial stuff when I could be making a name for myself like my Wasband, who has the same career I have, only he works with multi- million dollar budgets.  He's been published in many hard bound books and magazines and he is very good at what he does.

I was ready for this confrontation, but honestly surprised by it. I thought they understood me better.

It was a perfect opportunity to explain to my kids that perhaps they misunderstood what the currency of happiness and success was to me.  Being a mom is my currency.  When people ask what I do...I tell them I am a mother. Being a designer is just a job to me, it's not what I do.   I could drive down just two streets in this town and point out a dozen or more businesses from restaurants to banks, to hospitals, retail shops, schools, churches and medical clinics that I designed yet no one knows anything about that.  Not even my kids really.  I just do my work and walk away.   I don't attend ribbon cuttings or open houses.  I don't display my business cards...getting praise and recognition is not my thing.

My thing..I explained to one of my kids was getting up at 3:30am to show up to my job at an Architecture Firm by 4:30am so I could take my lunch break at 7:30 am, drive home, wake up the kids, make them breakfast, read scriptures, pray and take them to school...  Then drive back to work until 3:30pm when I would pick them all up and spend the rest of the afternoon helping them with homework, activities and making hot meals we enjoyed together.

My thing...I explained is cleaning someone else's house so I can come home and take them to a doctor's appointment or several doctor appointments.

My thing...I explained is working on some small design jobs on my computer so I can work while sitting near them for endless days in the hospital.

My thing...I explained is seeing them learn and grow and stumble and fall and pick themselves back up and struggle and triumph and hurt and love and succeed and find joy and show love and serve others and be kind when kindness is hard and forgiving when an apology never comes and understanding and temperate and peaceful and compassionate...and to think that we went through all of that together!

My thing...I explained...Is them.

When you know your currency of life, then every decision you make becomes easy...will it add value or not?  And that is how I have lived, however poor against the yardstick of the worldly economy it may seem.

That's my thing.  That's my crusade.  That's my march, my currency...the things I value the very most.  


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Construction, The Er and the Eye Saga

The front of my house started coming down yesterday, on purpose.  I have to clarify because, well, you know us!  It wouldn't be a surprise if my house fell down unexpectedly!  The front of my house has been leaking since I moved in 11 years ago.  I didn't worry too much for awhile because it was just leaking into my unfinished basement.  Then, a few years ago, I tried to do something about it and the HOA just kept saying they would address it.  And then address it...and they never did.

Finally, in November when Shelbie had her stroke, the doctor was not happy she going up and down unfinished stairs and wanted them carpeted.  I'm not doing that until I know I have a dry basement.  So, long story short, my employer that I use to work for at the Architect firm jumped into action when he heard and lined up people to come and inspect it, establish the problems and then people to fix it right.  I was so relieved to have help on this one.  We are even trading for some of the work which helps my bottom line immensely!!

The water damage was more extensive than anyone thought once they got the stone off.

They worked so hard and fast yesterday.  Today, they are laying the stone and then it will be done!  A three day job so not too bad.

Yesterday, Shelbie was getting bad again.  I am really at my wits end.  Nothing I do brings her comfort.  I knew she was getting dehydrated so after consulting with my bone marrow failure moms on our FB group, I decided to take her to the ER last night.  I'm glad I did.

Our favorite ER doc was on duty.  This is my first round of dealing with Influenza so I have discovered I had some strange ideas about what the flu was and was not.  I thought Tamiflu actually made the flu go away.  Nope, all it does is shorten the duration.  It's not like an antibiotic.  He said a normal healthy person will have their world rocked by influenza for 10 days to two weeks.  "Your kids...you can count on weeks of this.  They have no immune system to speak of so it's going to be a long haul."

My mom friends suggested that the flu is just going to wreak havoc for weeks and other things like checking Mono or EBV.  I hadn't considered that before.  Her lungs are looking okay and her counts have tripled which at first, sounds like a really great thing but to have counts triple means something is attacking the body.   Her platelets are still low though.

Basically, she is on the best antibiotic for Mycoplasma which she likely has from Sam and it's also the best one for her sinus and ear infection.   Tamiflu is done so there isn't much more we can do for her flu symptoms.  I thought this doctor asked a really great question.  He said, "I can't make you better tonight from the flu or mycoplasma but tell me the symptoms that you can't deal with for one more second and let me see if I can help you with those."

For Shelbie, it's nausea, weakness, cough, and headache.  (And she was dehydrated)  So, he started an IV, gave her IV meds of Zofran for nausea, a codeine concoction for her cough and some IV meds for pain.  If nothing else, she felt cared for and we both learned a lot about what to expect over the next two weeks.

I really thought we had escaped the incubation period for the rest of us getting the flu but he said since she isn't clearing it, we are all still at risk.  He seemed to think it was a certain thing that it would spread through the family but I am determined that it will not!  I've been following her around the house with bleach and keeping things sanitized.

In other health news of the disturbing variety...Spencer's eye has not been improving at all and he continues to experience a lot of pain in moving his eye.  He made it back in to the Opthalmologist and he confirmed that it is not one bit better.  It's starting to be a big concern.  If we can't get this autoimmune issue to back down, he could lose his vision.  Everything is so swollen and continues to put pressure on his nerves.

Aye, aye, aye...we are in bad shape and there is no end in sight.  I was afraid to check in with Sam last night but he said he finally feels a little improvement in his health.  Here's to keeping hope alive.

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Tuesday, January 24, 2017

More of the same

We are still pretty much on the same rocky road.  Shelbie was lucky enough to develop a secondary bacterial infection.  Shocking!   And, not lucky at all.

When I called on Monday to schedule an appointment with our family doc here, they told me he was booked out until March!  Are you kidding me?  His partner is also booked out that far.  I'm not a huge fan of their PA's, mostly because they are all new and I just don't have it in me to explain the whole, long, dreadful story when all I need is an antibiotic prescription.

This isn't the first time I've called and they have been booked and I did try the PA's once but I made the hard decision to change clinics.  It was really hard and obviously meant that I did have to explain the whole nine yards. We settled on the urgent care clinic we've been frequenting lately.

It'll be alright though, I think the doc was a little overwhelmed.  Or a lot overwhelmed.  Anyways, she now has a sinus infection and her lungs sound pretty rough so he was very concerned that we are headed onto the pneumonia train!  I was grateful that he was aggressive in treating her.  The antibiotic she needs has a strong interaction with three of her other meds so she has to cut way back on those or she will end up with some heart issues which we really don't need.  Cutting back on those medications is going to create some more problems but such is life...it's only for 5 days.

Shelbie is pretty much a wreck of a person right now.  She's been sick for so long and it's wearing her down. I don't blame her at all but it's hard! It's been hard on all of us.

Sam is not better but he isn't worse either.  We see our Oncologist in 2.5 weeks for our quarterly check up so we will have the hard conversation then about what to with him.  Pneumonia for the 3rd time in 6 months isn't a good sign.

We did get a few tests back that were surprising to me. Shelbie's MRI of her spine came back normal.  Very normal, no signs of granulomas or tethered nerves which is huge and a great blessing!!!

Some labs came back and every single cell line in her blood is well below normal...very, very low! Pancytopenia! Her white count was barely at 2 and she is neutropenic at 800, (if memory serves me right).  It's been a terribly long time since she was that low.  There is one number, the Mean Platelet Volume, that always stood out to me when she has having severe and serious platelet issues- that number was always high.  We had one Immunologist tell me that when that number is above normal, it usually indicates that platelet destruction has begun. Today, that number is as high as it was when she was at her sickest with ITP, 14.  So, I'm very nervous and will be watching that closely.

I feel like we are caught in a downward spiral.  It is very reminiscent of 2007 and 2010 when she crashed.

I'm still struggling to recoup from last week.  It's just a combination of fatigue and worry I guess.  I never seem to get much of a break between the blows.  It is becoming more and more difficult to make a living, take care of kids and take care of myself.

The front of my house is being torn off tomorrow!!  That is actually a good thing!  It means for the first time in 11 years, my basement will stop getting water in it!   I think we might celebrate big this weekend...






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Saturday, January 21, 2017

And then, a broken hallelujah

There's only one word to describe the past two days.  Broken.

Late Thursday night, Shelbie was called in to do a stillborn photo shoot at the local hospital.  She's been awaiting this call for a year and it has been something she has wanted to do for many years.  She is one of the hospital volunteer photographers for these situations.

She asked if I would say a prayer with her so that she would take good pictures and bring peace to the family.  It was a sweet and tender moment.  When she got home, she cried and cried and cried some more.  It was very hard for her to see that kind of grief and to hold and handle a tiny, 10 oz., 10 inches long, 18 week, perfectly formed baby boy who was breathing on his own and who's tiny heart beat for more than just a few minutes, much longer than expected.  It was hard to then see him return home to his Father in Heaven, already accomplished in what he was to do here.

A broken hallelujah.

We left just after 5 am on Friday for Shelbie's MRI scans of her spine and Spencer's follow up with the Cardiologist.  The roads were an ice rink from our front door to the outskirts of Salt Lake.  We arrived 15 minutes late and after a 4.5 hour drive in that mess; exhausted.
Huge flakes of snow falling in Salt Lake


After the first round of testing, we ran down to the cafeteria to grab food before the next long scans. At the table beside us, sat a man.  He was eating breakfast but tears were pouring down his face.  In between bites, he would hold his head in his hands and his whole body shook with sadness and grief.  After just a few minutes of this, he cleared the tears from his eyes and left.  I wanted so much to comfort him.  It was heartbreaking.  He was so young and all I could think about was what seemed to be his great loss.  I paused myself, to pray for that stranger.

A broken hallelujah.

Shelbie was so sick.  From the time we arrived, she was crying and in pain.  She had a fever and chills and aches.  We started her out in a wheelchair and by the time we made the long walk across the sky bridge for her scans she was not well.  I had limited resources with me as far as medication.  I called three of our docs and no one was around.  I called the pharmacist who supplies the plasma because I thought she was having a bad reaction to it.  He gave me some ideas but all treatments would require a doctor and here we stood in a major hospital full of doctors and no help to be found.

Spencer and I reclined the wheelchair so she was basically laying down.  I bundled her up in blankets and gave her what 'over the counter' meds I thought might bring her some relief. I had Ativan to help her through the hour long MRI and sent her off with the nurse and a hope and a prayer.
In hopes of making her laugh...when I asked her what music she wanted for the MRI she said "Today's Country"  My response to her was, "Well, in case they don't have today's country I will put that they can play yesterday's country too."
Ha ha. 
 Her scans took a little longer so we only had time to rush back down to the Cardiovascular Clinic for Spencer.  Shelbie continued to cry.  There was no way I could take her back with Spencer so I missed his appointment and sat with her in the corner of the waiting room.  I have missed every single one of his cardiac appointments because I have had to take care of someone else with more pressing problems.  

The guy who checks people in, and has become like family because we are there so often, kept coming around with bottled water and offers to bring relief to Shelbie.  He was so concerned.  I was so concerned.  Just before Spencer was through, he came over and said, "You should take her to the urgent care.  She's really sick."

Yes, I thought, that is what I need to do.  There was no way she was going to make the long car ride home in this condition. He was an answer to my prayer of confusion as to what to do for her.

A broken hallelujah.

We hurried down the hall, past the Starbucks to the Urgent Care.  They quickly directed us to the ER. The ER staff checked her in but we had to wait nearly two hours for a room.  Because she is immune compromised, they would only allow her to be in a private room.  I'm a small town girl where everyone gets a private room in the ER so I was confused.

The ER waiting room was packed with sick and miserable people. Shelbie was getting worse by the minute and losing her patience and it was a tough situation. I was getting worried and I was tired and the whole day was feeling claustrophobic to me and I wanted to find a way out of my life. After Shelbie snapped at me for not making them move faster, I excused myself and ran to a distant bathroom to gather myself.

I stood in the stall and cried and cried and begged and pleaded for God to intervene and get her some help so we could just go home.

I cleaned up my face and hurried back to the ER.  No sooner did I sit down, they called her back.

A broken hallelujah.
The pain scale didn't go high enough for Shelbie so I added a face for her.



I was not prepared for the sight I saw as they took us to her room.  People everywhere!  Dozens and dozens of nurses, doctors, police officers, paramedics, lab technicians and patients!  Patients laying on beds all along the hallways. No privacy.  It was chaos.  Way too much for this sensitive spirit of mine.  It was too much for all of us and Shelbie went into panic mode when we got to her room where we waited some more before being seen.

The ER was overwhelming and loud and Shelbie was unravelling!  I said to Spencer, "Please just give her a blessing.  Quickly.  Before nurses and doctors start coming in."  It was the last thing I could offer her.   I stood at our door to keep anyone from entering while Spencer blessed her.  I wanted that room to be the holiest place in that moment.

And while the spirit filled that room, a man laid on a gurney beside me, with blood covering the sheets, mouthing off to a nurse.  On the other side, a man having a moment with his drugs was withdrawing.  Across the hall, a women broke with reality and howled and screamed.  The place was littered with brokenness and grief but inside that little sterile room where the three of us sat, the spirit was there and for the first time in days, I felt it.

A broken hallelujah.

Shelbie has Influenza A apparently.  I can still hardly believe it.  I'm still not sure how that happened.  I have Sam who's immune system is even more crippled since he's been a week on steroids with his pneumonia, now the flu to contend with in girl with only the immune of others to fight this. In the mix is Spencer who is in no better immune shape than those two and he has a sore throat.  I can only imagine what is coming next.

All day long, on every TV in the hospital, the Inauguration was being played out.  On many stations there was a split screen of the rioting that happened simultaneously.  The entire day, I kept wondering how we all became so broken.  I was disgusted with the people rioting with such anger and for no good reason.  I was angry with the FB feed of friends, people I know who have nothing but horrible things to say about a man who has the courage to at least try and lead this country.  How can anyone know what kind of job he will do at this point?  How can anyone not want to do anything but hope good things for him?  Why do we have to be so mean to one another? So divided?  How did we become so selfish?

How is it that I live in this world of hurt?  I hate it here. I hate what has become of people.  Everyone just seems too busy to be the loving, patient, caring spirits we were meant to be.

The anger and meaningless rage and hostility out in the world, was a sharp contrast to the heartbreaking, sadness and grief that few choose. I witnessed this broken world in every second as we sat at that hospital.  It was more than I could even bear to witness.

As I fell into bed last night, some time after 1am, I gave thanks for the little hallelujahs I was able to experience, even though, no especially...since they came during some of the most broken moments I have experienced.

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Thursday, January 19, 2017

All you can do is hold on

Sometimes, all you can do is hold on for dear life and that is what I am doing.  This week reminds me of a merry go round.  It was all fun and games to start with.  You plant your feet on the gritty, diamond metal, ground down with years of dirt from little feet.  You grab the chippy painted bars and tell your friend to "GO!".

They run as fast as they can and the wind blows and your hair flies out behind you and you think  you might get sick but it's so much fun but then your slippery, sweaty hands slide down the pole and the force of the spin is shifting your feet and you're sliding ever so close to the edge and soon the ground is much closer to your body than when you started and you scream, "stop, stop, stop!"

That's me.  This week, its not so fun watching life come at me so fast and I'm screaming, stop, stop, stop!

We started with an unexpected bout of double atypical pneumonia in Sam.  He came home on Monday night and he was so sick and ran a high fever.  Knowing I was taking Shelbie to Utah the following morning, I hurried him in to the urgent care just before they closed.  We all laid wagers on what the diagnosis would be.  Everyone in the clinic was betting on Influenza but Sam said, "Nope. I have Pneumonia." The doctor said, "There's no way. Influenza."

Nope...pneumonia.  Very same atypical pneumonia he had at the end of November. This time though, both lungs are filled with fluid, top to bottom.  The doctor said he sounds like ripping velcro in his lungs.  So, we headed home with more antibiotics and steroids and cough medicine.

I did not sleep Monday night.  I was so worried about being gone in case his oxygen levels dropped or his fever worsened.  I spent all night trying to figure out who I could call to help me.  When he woke up, before I left, he was trembling and his fever was well over 103.  I hate making choices when it means choosing to care for one child over another.  I ran as fast as I could to get him an assortment of fluids, snacks and other essentials. I left a chart of when to take which pills, the oxygen sat monitor and the blood pressure cuff with instructions of what to do in case of a breathing emergency.

It was terrible walking out the door.

To recap Shelbie's appointments...

1.  They are increasing her plasma and will do so aggressively each month.
 
2.  At our Neurology appointment, it was brought to my attention that the brain scans she had done when we were in the hospital at Huntsman...the ones that I was told were textbook normal...were absolutely abnormal!  I can't even tell you how angry and upset I was that the hospital neurologist had lied to me! There is very slow activity from the central to left part of her brain. They showed us the spots of concern on her brain that shows deterioration and inflammation. There are a lot of spots! This area of the brain controls movement, balance, co ordination and memory. We witness this deterioration. So, that's scary.

This pattern of brain problems is seen in chronic conditions like seizures, strokes and migraines.  Well, migraines are safely ruled out so that leaves us with stroke and seizures which Shelbie has had both.  Many, many seizures as a child.  Our new doctor thinks there is a strong possibility that Shelbie is having multiple seizures a week or...even small strokes.

3.   At her exam, it was noted that she has tethered nerves in her legs and ankles which I have known this for years when we saw our Neurologist in Seattle but there never seemed to be an answer or further testing.  She also has serious clonus in her muscles and nerves in her lower extremities.  This is a clear sign that something is wrong with her spinal chord/central nervous system. So, they are going to do a spinal tap.  There is concern that perhaps the granuloma tumors she has scattered in her lungs and abdomen have spread to her spinal chord and/or brain.

4.  She will have several more detailed brain and spinal chord scans to look for tumors and Chiari Malformation which Sam has. Those are happening already tomorrow!

5.  She will be scheduled for a 4 day ambulatory EEG coming up next month.  She will be hooked up to a million wires and they will track her brain function for 4 whole days while she does her usual activities...usual being hanging out at the hospital for a week.

6.  Finally, when these tests are done. They will decide about chemotherapy.  I didn't even bring it up to this new doctor, it was already on her plan.  Shelbie's immune system is both non-functioning and overly active and crazy.  Chemotherapy will help to reset that...hopefully and maybe shrink those granuloma tumors. We will decide this soon but its most likely going to happen.

Because this isn't grim enough...they are trying to sort out more mitochondrial issues and how much of all of this is being affected by the short telomeres.

This new doctor was a bright spot in our day.  Her level of empathy is something I have never seen in a doctor before.  Multiple times, she was moved by Shelbie's struggle yet she is strong and smart and the picture of perfection, as was her Fellow.  I know without a doubt that this is part of the plan.  Shelbie's life has been preserved for this doctor.  It's such a new specialty and if we had of been in Salt Lake at any other time in this journey, she would not have been there.  The timing is pretty amazing but that's how God works, he's pretty much perfect, even if I'm not!

It's all so overwhelming.  Sam woke up this morning looking like he might live but this afternoon, he is looking pretty rough again!  Ugh...He has to try to make it to class tomorrow.  Why does this always happen to us...these poor kids just want to be normal and try so hard to do normal things that normal young adults do and it's a constant battle.  That in and of itself is crushing to me.




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Every Trace of Sadness

I have been lucky enough in my life, to experience things that absolutely took my breath away in awe and wonder.
 
I remember seeing the Eiffel Tower as a 15 year old in Paris.  The scale of that structure is staggering.

I remember when we were in New York at the Museum of Modern Art.  I turned a corner and there, hanging on a wall of its own, an original Van Gogh.  I was not expecting to it there.  Van Gogh is my absolute favorite artist.  I stood 6" from that painting and it took my breath away.  I couldn't move.  I didn't want to move.  Even now, I find myself craving that moment again.

Yesterday, at Shelbie's clinics, I found myself in moments of awe and grandeur.  Moments that stole more than my breath away.

We saw our Immunologist first.  He was taken aback at how awful Shelbie looked.  Even in the hospital 3 months ago she looked nothing as sick as she did on Tuesday.  As we sat discussing the past two weeks, Shelbie had an event.  The same kind she's been having every day for the past few weeks.  She was trying to say something, a sentence about her situation but the words came out in all the wrong places so the sentence was hardly a sentence, more a jumbled mess of words. She kept trying but couldn't get the complete sentence out.  With wide eyes, and tears streaming down her face, she looked at me and said, "Help."

I looked back at those beautiful big eyes with my own, filled with tears.  Our doctor was so gentle.  He looked at her and said, "It's okay.  Just relax.  It's okay."  I knew what he was thinking.  He began wrapping up the visit, announcing that we needed to increase her plasma yet again and rushed us off to see the Neuroimmunologist.

There are only two doctors in this country who practice Neuroimmunology.  How blessed that we were able to meet with her.  We started with the Fellow who began getting a history on Shelbie.  At first we were all over the board, jumping across 2 1/2 decades of problems.  I finally decided we needed to start at day one.  So, I did.  I started with the night that I found Shelbie unresponsive at two weeks old.  That's usually all anyone ever hears of that story, just simply stated, "Shelbie stopped breathing when she was two weeks old.  But the doctor wanted more detail.  Next thing I know, I am in that moment and I remember the night air, the birds outside the window, the setting sun.  I remember the apartment was stuffy and hot.  I remember hearing the clock in the kitchen ticking.  I remember seeing Shelbie as grey as the skin of a seal against the white lace on the bassinet.   I recounted the ICU that night and the following night as I wondered if I would leave with my baby.

Then she was two and I was 20 minutes out of town at a quilting party and summer was winding down and in 3 more weeks, Spencer would be born.  And the wind was warm and little kids ran free from one end of the dusty yard to the next of the home we were visiting.  She ran to my arms for a snack and I picked her up and she was laughing, then, without notice, fell back, out of my arms.  Lifeless and grey and everything stopped including her heart.  I screamed for help.  I laid her on the floor and started CPR, and between breaths I shared with her, I cried and screamed for her to come back to me.  And we were whisked off to a truck and someone else did CPR as they drove us to meet the ambulance, lost on the country roads and I will never forget what the world looks like through the back windows of an ambulance, with a belly contracting and my baby girl struggling to breathe.

And for nearly a full 60 minutes, there was no shortage of stories.  I felt exhausted as the Fellow left to brief the doctor before they both came back to our room.  And beside me, Shelbie sat as lifeless as I had known her to be at times. "I've never heard you tell that story like you just did."  and her eyes filled up with tears and as if we were standing on the edge of one of the World's greatest wonders, we stood on the edge of our little wonder of a world and simmered in a post trauma serving of sadness I had never felt before.

It took my breath away.  I was in shock as to all the things I have witnessed and done to keep this girl alive.  To keep them all alive. Rarely, have I told her story in one continuous thread.  I have no words to describe what I felt...Overwhelmed? More than that.  Way more than that.

And then, we talked about what is going on with Shelbie and it was a difficult 90 minutes. The perspective of feeling so deeply, our traumatic and hard past, to intellectually knowing what is coming for her and I felt every trace of sadness I have ever felt and ever will feel and my insides quivered and they haven't stopped.


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Monday, January 16, 2017

Beautiful How It Hurts

I came across this quote and it seemed to resonate with me.


I can't say for sure why or how we keep going.  You could say all sorts of things and they may border on truth of the whys and hows.  Certainly, there is a generous degree of mercy from Heavenly sources that help us out.  

Shelbie is going on week two of being quite sick.  She did have two days without a fever and she managed to even do a couple of photo shoots.  She had some issues during the shoots and was extremely fatigued.  She continues to have an odd set of symptoms, fevers and that flu-ish feeling.

Tomorrow, we meet with our regular docs and a very specialized doctor in Utah to see if she can make sense of it all.

In the back of my mind, I am always wondering if this is the right thing to do.  I feel like we just chase our tail in these appointments yet at the same time, it's evidence that we never give up.  What if this doctor was the one who actually figured things out?  What if we had given up and refused to keep fighting this?  What if there is nothing more we can do?  But again, what if there is?  It's the age old problem when living with an orphan disease- how much is too much and when do you stop the madness.

I'm a little nervous about  the outcomes tomorrow.  It seems that every year, I witness a little more deterioration in her.  I worry about the day when she can't stay ahead of the hurt. I worry that in one afternoon, our entire life may change in drastic ways depending on the outcome of these pending appointments.  You just never know.  In many ways, I'm more nervous about these next few days than waiting weeks for biopsy results.

So, here's to the beautiful mess we find ourselves in again...still.  Here's to never giving up.
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Sunday, January 15, 2017

Leaving Room



There is something to be said about the places and spaces in between the throes of life. Those sacred, empty moments where the mind can wander, thoughts find a place to settle down, peace is created, holiness is found. Nothing is there and Everything awaits creation and joy seems entwined about.  I never realized before, how important it is to leave room for those things to reside and flourish.

I am not good at leaving room in my life.

On New Year's Eve, I worked a full day.  The house was quiet and empty. Sometimes, there can be an uprising of silence, a roar of nothingness and it's all too much as was the case that night.

I took off to the nearest Barnes and Noble.  My favorite 'Wonder' in my world.  The place where you can be swallowed up in stories.  Million of stories that stir your soul.  I love sitting there.  The smell of paper and ink is indelible!

And so I sat.  I sat in the corner of Starbucks, a hot cocoa in hand and my favorite magazines stacked beside me. I read.  I watched the people rushing off, ready to welcome a new year.  I opened my notebook and let some thoughts dribble out of my head and the whole evening was going so well.

As if someone closed the book before I was through with the chapter, everything changed and I noticed a hint of space, a little room that spread open the year.  A space where appearances weren't allowed; a needle scratching across the vinyl songs that play over and over to keep me distracted, halted everything, and there I spied my life.  My big, brutal and beautiful life.  The life of extremes I'm always running from.  I started to feel it all and that was a moment I wasn't expecting.  I didn't know where to put it all.

I left.  I ran as fast and as far from myself and remembered why it is I don't leave room for these things. It's hard to dwell there for too long, if at all sometimes, but at the same time, it could be balm of relief, a place to pause and be present.

Perhaps this year, I'll try again to leave room for the important things.   I'll try to clear out some space to consider what matters the most.  I will become acquainted with my life instead of running from it.  Maybe.  Maybe not.


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Saturday, January 14, 2017

Just like that...

My Sam came home this week.  Dirty laundry in one arm and a load of excitement and exhaustion in the other.  How did we get from this... 

Sam 2nd Grade

To this!

2016

To This!...College Life.  I think this picture Sam sent me of his first "homecooked" meal pretty much sums up the life of a Freshman College boy.

Schmeat and Processed Orange Something
I text him everyday but it was so great to actually give him a hug.  We had a few moments of just him and I and I didn't want to waste a second to tell him how proud I am of him.  He shared that he loves apartment life, loves his roommates, loves being on his own...school is hard.  He's got some hard classes and I could tell he is struggling a little with that but he's working hard.  Harder than I've seen him work.  He even added a ballroom dance class with his best friend Kelsie.  Those two have been like brother and sister for as long as I can remember.  She is beautiful in every single way and they have a good time together.

Christmas 2016


"Why are you so proud of me?" He asked

"Because, everything about this experience is beyond your comfort zone. It brings anxiety every day but you are doing it.  You are facing the challenges head on! I don't think I would have made the same choice if I were dealing with all of the hard things you already deal with."

"Well, maybe it helps that I didn't really think this through.  It's really hard."

"Yeah, maybe so, but look at how much you've grown in just two weeks!"

"You know what would really make you proud?"  He asked.  "I make my bed every single morning.  I clean up the bathroom when I finish getting ready.  I never leave my dishes in the sink, I wash them right away.  I wash my roommates dishes too.  My clothes are always hung up.  Mom, you wouldn't even recognize me by the way I keep my apartment!"

He makes me smile.


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Wednesday, January 11, 2017

Not To Be Had

I've really been trying to make the best of things this year so in my continued effort to pursue the hope of joy, I decided to go to the gym last night to work out some of my frustrations and clear my mind and I am finding it helps me sleep a little better than I usually do.

So, I change into my less than cute gym clothes, the T-shirt that says, "I Literally Cannot" because I love irony and oxymoron.  It was pretty crowded so late in the evening which surprised me. I chose my usual elliptical machine, turned on a TED talk about giving up social media and away I went.  By that, I mean about 11 minutes until I was completely bored with the talk and the elliptical.

There's one problem with not sticking with the bike, elliptical or treadmill...there's a learning curve to the other machines.  So, I wander around hoping to eye a machine I think I can master just sitting down on.  The gym is no place to build your confidence and independence if you don't know what you're doing.  Sitting down is just the beginning!  Then you have to find the little handle or do-hickey that adjusts the seat to match the length of your giraffe like legs.  That can be tricky, again, for the less active minded, middle aged girl. And then! You have to study the little 1x2 sticker that shows you how to work the machine and that's never easy when you have tri-focals like me!   People look at you like you are studying for you MBA exams!

I approached a few machines, but then an evil, fat voice inside my head convinced me that it was beyond my skill set.  I remembered that they had my favorite 'machine' in the smaller part of the gym .  It's the bench that sits at a 45 degree angle and you lock your ankles under the padded bar and rest the front of your body on the angled part.  Then, with a 20 or 30 pound weight in your arms, bend down, over the padded part as if you are going to touch the floor and then back up to standing.  It's my favorite work out of all time and I can do like 30 or 40 of these things.  So, it's good for my gym ego!

To my horror, the machine was gone!  Its was horrifying because there were so many people in that part doing free weights, and floor work.  There was a different machine in it's place.  There was clearly no room for me to do free weights and other than jumping jacks or maybe a plank, I'm not a floor work type of person so, I sat down on the only machine in there.

For the life of me, I could not figure out how to make it work.   I kept banging my head on a bar.  When I thought I had it, I forgot to look at the amount of weight on the machine and it was out of my league!  I couldn't budge the stupid thing but not to be had by a dumb machine, I kept trying, thinking I could lift the handle with enough will, powered by shear embarrassment because now...everyone in the room is looking at me!  All I want to do is perform, not peter out!

I should have cut my losses with a pretend call on my phone but it was too late!  A lady came over and said, "Do you need some help?  It seems like you don't really know what you're doing?"
"No! No, I'm good! I was trying something different. Ya know...people do different things than what a machine is used for. I was trying something different.  Thanks though. I'm done with my weight part.  I'll just head out to the treadmills.  Thanks!"

Chatty Kathy couldn't shut up!  I get the biggest fool award, if there was one! That woman's facial expression will be forever seared in my mind!  I hope I never see her again in my gym life! Thankfully, as I was schlumping out of the room with my deflated spirit dragging behind me, my phone really did ring!  It was Shelbie!  Yahoo!  After 18 minutes, I had a real excuse to abandon my good intentions!

Nevertheless, the 11 minutes I spent on the elliptical seemed just right and being embarrassed for 7 minutes really got my heart pumping and I worked up some kind of sweat!  Man!  They say if you aren't sweating when you go to the gym, you aren't really working!  So, there's that!  At least I'm sticking with that theory!

Maybe my next trip, I will bribe Spencer to go with me because son's don't let mom's look stupid at the gym...working out beside them.  I'll plan to wear my cute workout clothes that day!

Oh my gosh!  I just thought about that dumb shirt I wore...I literally could not figure the machines out at the gym!  How embarrassing...I mean, more so now than when it really happened! Note to self...Don't wear that shirt if you literally cannot do something!  😏



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Tuesday, January 10, 2017

Misery

The misery of Shelbie's mystery diagnosis continues.  Poor girl is miserable and spends much of her days and nights in pain, discomfort and crying.

At dinner last night, she had a little melt down and said, "You always had the answers!  You always knew what was wrong and how to fix it.  You took care of us and I never worried because I knew you could do it but now you don't have any answers!  You never do anything to fix us." And with that, you could have heard a pin drop.

What do you say to that?  I can't argue with her.  I use to have all the answers, sometimes before the doctors had all the answers.  There always seemed to be something I could do to make them better or at least bring them an acceptable degree of emotional if not physical comfort.  It's too complicated anymore.

This morning, I had a chain of text messages from our Immunologist, Dr. G.  He is scratching his head as well and we both have similar thoughts on where this is going; either her body is rejecting the plasma transfusions and attacking itself or her autonomic nervous system is completely disoriented.  I'm torn between the two.  It certainly seems as though nothing in her body is being regulated right now.  She bounces between a fever of 101 and a low temp.  Her counts are slightly elevated for her but still well below normal.  Platelets are dropping.   Blood pressure sky high, resting heart rate over 100. We are a week into this.

Though another week of this seems like a long time, the plan is, I will take her to Utah next Tuesday and she will meet with our Immunologist and a new doctor he has lined up.  She is one of kind from what I understand.  She is a NeuroImmunologist and specializes in diseases of demyelination, and paraneoplastic neurological syndrome as well as cancer and other disorders of the nervous system.  I had no idea cancer could attack the nervous system!  Sheesh.  Upon reading her credentials, I can see that she might be another piece in our 1,000,000 piece puzzle.  She seems like someone who can help us understand the deterioration of Shelbie's brain they discovered last November.  She also works with Arteritis or inflammation of the arteries.

Sounds like I'm about to get an education I didn't really sign up for.  But, at the same time, it feels like everything is going according to plan...someone's plan.  The appointment with the Neuroimmunologist was made in December and at the time they called with the referral, I didn't really think it was necessary and quite frankly, I was sick of Utah and traveling and I thought it strange that Dr. G didn't even tell me he was going to send her to another specialist.  We went with it. So it goes, Shelbie's pattern of symptoms over the past couple of weeks definitely fits the bill to see this new doc.  Ugh.

I have been getting daily calls from Spencer's Cardiologist wanting to see him.  It's hard to stomach the thoughts of driving to Utah in the winter let alone at all!  But they are getting frustrated with me because I keep putting it off and they are concerned as usual.  So, I tried to make it for Tuesday and Wednesday since we will be there but no.....Friday it is!  Arghhh....

And to wrap up our tumultuous start to the year...I had this feeling of discomfort in the pit of my stomach that something was not right with our insurance.  My insurance guy up and quit and supposedly turned us over to some other guy with a different company but the new guy doesn't return calls and has neglected to do his job, so I've taken on an insurance hobby while I try to find someone who actually wants to do their job!  (Insert eye rolling)  I received three letters from our insurance company and they kept changing the name of our Network.  A long and angry phone call yesterday, revealed that sure enough, the State of Utah is out of Network.   Not only that, the doctor we go to that is .5 miles from my house...OUT OF NETWORK!  I should have guessed since the name of my Network is RealValue...That translates into- Really, we aren't covering anything of value!

I really want to punch someone.  I know, quiet, meek, mild me is getting fed up!

I am hoping that a very patient and apologetic, innocent bystander at the "Said" Health  Insurance Company has sorted things out.  I didn't really give her any options but to get us a plan that covered the University Hospital.  The best question I've heard all decade..."Why can't you just see the doctors in your own town?"

Stick a fork in me...I'm done.  Over and out!  Sick to death of the constant fight and drain on my resources.  The thought of doing this for one more second makes me think I would rather be committed to an insane asylum so someone else can be in charge and I hear silver buckles and long sleeves are the 'LOOK' this Spring.  UGH>>>




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Sunday, January 8, 2017

Change Pains

It seems I am feeling the pain of change in my life...as opposed to growing pains!

Sam has been officially on his own since Wednesday of last week.  I am going on record to say it is much harder to have a kid move 2 miles away than a State away like Spencer did.  It doesn't seem right that I haven't seen him in 5 days.  It doesn't seem right that he won't be here for FHE tomorrow night.  It doesn't seem right that I only set three plates at the dinner table.  It doesn't seem right that I am so lost and pained over the whole situation.  I can hardly wait for laundry day when he will come home to clean up!  Ha ha.

He sent me a picture on Saturday of his lunch with the caption..."Eating like a college student." It was disgusting.  Some sort of TV dinner with a shmeat of indescribable horror  (Shmeat is short for "not real meat".) and a side of rubbery mac n cheese!  Oh, my poor mama heart.  I can hardly stand the fact that I'm not taking care of him. Sigh...

Shelbie has been sick since Thursday.  Really sick.  While I was in Salt Lake on Friday, I was getting text messages continually that she thought she was dying.  Finally, at 6 on Friday night, I asked Spencer to take her to the Urgent Care.

We are really out of the league of any general practitioner anymore.  I don't say that to be rude, its factual.  They wanted her to go to the ER for a spinal tap because they were afraid she had meningitis.  They did several tests and her white count was double, her platelets were below normal, which hasn't happened in a long while and she continued to bounce a fever around despite round the clock dosing of Ibuprofen and Tylenol. The Flu test came back negative but they really felt it was a false negative.  So, it was really inconclusive though it certainly seems like influenza.

We had a very rough Saturday, her and I.  She was so miserable and there was really nothing I could do.  She was getting angry that I wasn't doing something to make it all better.  We exchanged a few words in trying to understand one another.  My lack of action translates to her that I just don't care.  The fact is, I care too much.  I care and it hurts deeply that we have reached a point where I can't change the course of this disease.  I can't make it slow down or even stop.  I can't make doctors smarter or more compassionate.  I can't wave a magic wand...I can't even make a fever go away if it doesn't want to!  There is literally nothing I can do at times like this.   All I can do is pray for answers, relief and wisdom.

This morning, as I was getting ready for church, I wondered if it was a reaction to the plasma transfusion from Wednesday.  She had a reaction midway and we had to stop and remove the needles for a bit and then start over with the needles in a different part of her belly.  Later that night, she broke out into hives from the injection and the following day is when the Flu-like symptoms began.  I did some research and found a lot of articles on Hizentra causing Flu-like problems that can last days.

I am very worried that this only leaves us one last resort...chemo again!  It totally sucks!  I will call our Immunologist tomorrow and see what he thinks. It's a conversation he and I had back in October when she was in the hospital. Her immune system is attacking every part of her body.  She breaks out into hives whenever she washes her hair even!  Her body thinks it is continually under attack.  The drop in her platelet count is another reason to believe that her immune system is poised to start attacking those cells again.  The chemotherapy kills the immune system so it can't overreact. Because it leaves her without immunity, we hit the IVIG again hard core and in theory, things settle down.  The whole process takes almost a year!  9 months of Chemo is what she has had to endure in the past.  They use the same drug they use for treatment of Lymphoma.

I don't want to put the cart before the horse and get ahead of things but it's something I am coming to expect and hopefully, I will be relieved if they can find another way to get things back on track.

In the meantime, she continues in misery but we have a better understanding of one another and things are calmer here.  Maybe tomorrow will bring some answers.  It's been one tough weekend to finish off one tough week.



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Friday, January 6, 2017

Impeccable Timing

Today is one for the books...

It actually started last night when discovering that the microwave was broken.  I thought it was not running well for the past couple of weeks but didn't think much of it until it took 6 minutes to heat a slice of pizza until it was just under cold. The front door handle broke last night too.

This morning, I had to drive to Salt Lake for a presentation with some clients but upon entering the shower, there was no water! Not even a little tiny drop.  I checked all the sinks, toilets and nothing.  No water.  I spent about 45 minutes trying to figure out what to do but I really needed to be on the road in order to arrive to my meeting on time.  I threw on some clothes, did my make-up in less than 90 seconds and texted my home teacher to see if he had any ideas.

He came right over and then thought to check the main water valve in the basement.  It didn't seem terribly cold but there was water dripping from the pipe where the house meets the city pipes...7' underground and in my family room where it was room temperature.  He suggested we put a space heater on it so I did.  We went upstairs and Shelbie stumbles up announcing she is sick and nauseous which was great timing since we had no water!

As we stood there deliberating, all the faucets I had turned on to coax a drip out, started spewing water!  I was so happy!  I did some last minute things to make Shelbie comfortable and took off.

The roads were crazy!  There were parts that were a white out from the high winds.  Just outside of Salt Lake, it went from dry to solid ice.  Cars were going 80 mph and hit that ice and began sliding everywhere, hitting the concrete barrier, overturned on the shoulder...It was like driving through a mine field.  I couldn't believe I made it through that mess in one piece. It took me just over 4 hours to get there.

After my 3 hour meeting, I came straight home and again, the roads were an issue.  It took me nearly 5 hours.  At one point, an hour from home, there was a massive pile up of 8 cars.  The Interstate traffic was at a dead stop and emergency vehicles were trying to get through the traffic jam to the victims. there were 4 ambulances, 8 police cars, fire trucks.  Car parts and pieces were all over the road it was a scary mess.

After the day I had, I thought how very lucky I was...blessed!  If I had been just seconds sooner, I would have been involved in all those wrecks I drove through.   We were blessed the pipe didn't burst and flood the basement.  It's so odd to me that a pipe buried 7' under the ground would freeze solid.  It's crazy.   I don't understand what I was to learn from that part of the day.

All is well that ends well.



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Monday, January 2, 2017

It's this and it's that

2017 is 2 days old and already, it's a strange little year!

They say a picture is worth a thousand words...

New Year's Eve, I attempted a nice little evening alone and that was too much of alone so I just went to bed.  Sam came home from his parties at 2:00 so I got up and caught up on his fun with him.  Shelbie and Spencer came home shortly after which was surprising because I thought they were all staying over at their dad's.  

But, there we all sat in the living room, chatting on about the new year, all our hopes and dreams...Just kidding, we aren't quite that poetic!  We were chatting about nothing really.  I guess my elbow knocked the edge of a small picture that hung on the wall and it took my huge picture down!  The simplest, tiniest nudge and the whole thing crashed.  On its way down, it whacked me hard!

I got a new nail and rehung the picture and then went to bed.  About an hour later, the darn thing fell down again!  I heard the most impressive crash and it woke the whole house up!   The two nails from the back of the picture that held the metal hanger were gone! How strange, they were in perfect shape when it fell the first time!  Just weird. 

On New Year's day, I came home from church and there was a dead bird on my door step.  The second dead bird!  Blood everywhere! Feathers covering the porch!  Just a really weird start to the  new year. 

I'm feeling a little better from my ulcer adventure but I am still convinced that my life needs to change.  I really need to figure out some better ways of handling stress and there is no shortage of that around here.  So...I did the most cliche thing I've ever done...joined a gym on January 2nd!  I hate being a cliche but I can't think of anything else I can do that I'm not already doing, to alleviate some stress.  Of course they were having a sale on memberships so I made the hasty decision after leaving the dentist office this afternoon. 


Tonight, I hit the gym and thought I might die but since I haven't worked out in two years or more, I'm going to ease into it.

So far, my life is all about this and that...opposites that happen at the same time.

Sam moves out tomorrow.  I feel excited for him but sad and lonely too.  We walked through his new place on Saturday and it was all I could do to stay engaged in the process.  He is excited but apprehensive at the same time.  I know in the end whether it works out or not, it's what he has to do in order to move forward in life.  This afternoon, we drove around campus to each of the buildings where his classes are so he is acquainted with them all.  I was hoping to talk to some 'resources' but no one was working today.
This is Sam being frustrated, stressed and annoyed that I wanted to take his picture in his new bedroom! 

The Bachelor Pad...Not bad!

When our plans didn't work out, I said, "Well, Sam, should we go to the Churro place and have one last churro celebration before you move out?"  (FYI- Churros are NOT a thing with us!  LOL)

"Mom!  One last churro?  You make it sound like I'm going to a boarding school in England? Since when were churros a thing with us anyways?"

Ha ha...my work here is done!!  I laughed, he was mad and we enjoyed our stuffed churro from the new churro joint in town!  I love teasing my kids! We had a good afternoon, just Sam and I.  I hate change...I hate feeling so many things all at once.

Today...I had to go to the dentist for round two of a $3000 visit!  They asked if I wanted Happy Gas and I usually decline because it's just extra money.  But I'm a little stressed so I said, 'Heck Yes!'.  The dentist was way behind!!! An hour behind so I laid there with happy gas, the lights off and took a little nap.  I hate the dentist but honestly, this was the best moment of 2017 so far!  I know...weird.

I have resigned myself to the fact that tomorrow is going to suck!  It just is.  There is nothing worse than moving kids out! I might want some more happy gas by tomorrow night!
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