Saturday, December 31, 2016

Here we are

One year sets and another year begins to rise on the horizon
We made it!  We all made it through 12 grueling months.  I've put on at least 15 years in 2016 alone...My heart is a little heavier, my brain is stuffed and my skin hangs a little lower in wrinkles of worry; just one of the souvenirs I'll be bringing with me into 2017 I guess. Oh, and some white hair too!

It was a year that left no room to breathe, moments that stopped us in mid sentence in our busyness of living. There were left turns and U turns and nowhere to turn.  We felt the impact of loss and grief but every now and again, an accent of hope and I daresay, joy.  However fleeting it may have been, I remember meeting joy in the most unexpected places; feeling joy that seized my heart in skipping beats I actually welcomed.

I could go on and on about how much I hated 2016.  I could go on and on with pleasing platitudes of hope for a great new year. You know, the niceties we expect everyone to say at a time like this, but I would really rather not.

Sometimes I just have to stay real and sometimes real is not a very comfortable place to be.  I'm not in a very comfortable place.  I am thoroughly exhausted from this year and not entirely excited for next.  I just pray it takes pity on me!

Anyways, I can't let the year slip away without mentioning at least something that made 2016 worth living...


I realize I am blessed to be wrapping up the year with these three that I journeyed with.  We did this year together.  All for one and one for all...and all that good stuff!  What amazed me is that my love for them grew exponentially.  The heart can sure hold a lot of love and then some!  This was my favorite photo of 2016.  Without a doubt, we all grew in spirit.  More than we can ever really measure and therein rested much joy!

I read this quote today from an unknown soul, "It is when you're going through the most difficult chapter of your life that your hero is revealed, and how beautiful it is when you finally realize you have the strength to save yourself."

These three are my my Heroes and Sheroe!  They saved me.  They gave me strength to keep doing what had to be done.  They made me try a little harder, live in hope and trust in the unfolding of greater things. I have witnessed them rise above every obstacle in front of them.  I have seen them defy the odds.  That is what made 2016 worth the struggle.

2016 brought some good things...Our nurse Gwen.  I never imagined that I would have room to welcome a stranger to my home and my heart every week for 9 hours of a day but she was sent from Heaven.  She was mercy that had been missing in my life.  Someone who stepped in for one day out of the week to shoulder some of this burden. Not only did she love and care for Shelbie but she loved my boys and I think they loved her too.  It was as if she always belonged with us.  Sadly, people come and people go.  We said goodbye to her this week. 9 months wasn't long enough for her to be in our life.  She is on a new adventure.  She leaves behind an empty place in our Wednesdays.


It was no co-incidence that we managed to compile an amazing team of doctors!  All of them new this year.  All of them in Utah.  All of them hand picked by God I think!

From the top left- Dr. Mary Beth Scholand- Pulmonology,  Dr. Adi Gundlapalli- Immunology, Dr. Paul Shami- Oncology/Hematology, Dr. Kathleen Boynton- Gastroenterology, Dr. Whitehead- Congenital Heart Disease, Shane Beeton- Faint and Fall (the guy who started Spencer's heart after a factory reset!)  Finally, Dr. Mihail Chelu.  We have an international team- American, Canadian, Indian, Lebanese, and  Romanian.  Pretty impressive minds!

                                      





I have Dr. Shami to thank for getting these amazing doctors together.  We really did end up with the best of the best.  He knows people all over this country.  He researches, he thinks about us, he works hard to keep the kids comfortable.  They all care about us and that feels so good to finally have some doctors who really care.  They are worth the 4 hour drive.  I still have some sad thoughts about why we couldn't have the same level of care here but I suppose there is nothing more I could have done.

We are adding two new docs in January to round out the team- Autoimmune specialty.  I am very interested for this upcoming appointment.

Anyways...so long 2016!  Later.



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Wednesday, December 28, 2016

Killing me quietly.

My life is trying to kill me.  I've been running from it for so long and it's finally catching up to me.   Literally.  It's killing me.  I ended up in the urgent care last Thursday afternoon because I thought I was having a heart attack.  Seriously.  I sort of let it go for a few hours and then when it got to the point I couldn't even drink water without excruciating pain and Spencer gave me a 30 second reprimand about how I never take care of myself, I drove to the doctor.

They determined that I was not having a heart attack but an ulcer attack instead.  I've wondered but I guess now I know.  They fixed me a concoction to drink that was horrific!  It was mostly lidocaine with some milky disgusting stuff.  I had to drink it fast so it wouldn't numb my tongue but man, did that hurt going down. After about 2 minutes, I felt so much better.  It was worth the gagging and drama I went through to swallow the stuff.  Of course, I acted like it was no big deal in front of the nurse as I tossed it to the back of my throat but inside, is where the drama was!  Ugh.

He put me on the most complicated set of pills known to man with instructions to eat several times a day.  Easy for him to say to the girl who hates breakfast, doesn't love lunch and is content with just a nice dinner.  Add to the fact my esophagus is now lined in razor blades of ulcerative joy...

Here's my dilemma with the pills.  One pill has to be taken one hour before or after I eat, on an empty stomach but it has an interaction with the other pill I am suppose to take, also on an empty stomach, 2 hours prior to eating.  and one hour prior to the other pill!  The first pill I have to take 4 times a day!  Tell me, how do you take that on an empty stomach yet you are suppose to eat all day!  I'm so confused which might explain why I am never compliant with medication.

The other bummer is that I had to stop my anti-inflammatory meds for my Lupus and Ankylosing Spondylitis.  So, I'm one unhappy camper.  For a couple of days, I was feeling better but yesterday and today is so much worse.  Nothing is settling and I just feel positively rotten and in so much pain.  I went to the health food store to stock up on some things I hope will help and I am going to abandon the prescription pills for now.

I can see now that I have to figure my life out.  Something has to change.  I just got a new job and I am very excited about it but it's another part timer and adds more stress.  If I didn't need it, I wouldn't have pursued it. I have no idea how to fix the mess I am in, let alone where to start in repairing my life.  Like everything else, there are just no easy answers.  In the meantime, I'm dying a slow and painful death!



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Tuesday, December 27, 2016

Christmas

Christmas already feels so yesterday!  How does that even happen?

We had a good Christmas celebration.  My parents arrived safe and sound from the Great White North of Canada, but ironically, we are stuck in the great white!  Talk about snow.  We have some.  More than enough.  It's been a very long time since I saw snow accumulation like we have had.  It's so beautiful and picturesque.

With everyone home, it was peace on earth around here.

My kids surprised me again this year!  They gave me a set of silver stack rings with their names engraved on them.  I love them. I was so completely surprised when I opened them.

On Christmas Eve, we went to visit May and take her a gift and some treats.  We knocked on her door and heard nothing.  We tried the handle and it was unlocked so we peeked inside.  It was cleaned out! Everything was gone except some mail that sat on the counter and her tricycle filled with stuff in the baskets.  I was very concerned about where she went.  She had recently stopped by my house to get some advice on her broken down car.  While she was visiting, I noticed that she walked with a limp and asked her what was wrong.  She said her leg was very sore and hot to the touch.  She figured it was just an infection.  I thought maybe it was a blood clot and urged her to see the doctor.  I always make it a point to ask her how the apartment is working out and she said it was fine.  She made no mention of letting it go or moving on .

We are pretty worried about where she is and how she is doing.

It's so sad to me how fleeting the Spirit of Christmas is.  I wonder if part of the spirit we love so much is the time we spend in planning the gift giving part of the holiday?  All you ever hear, is that it isn't about the gifts but really...it is!  Not so much in the receiving but in the giving. Its in receiving the gift of Christ and then giving away that light to those around us.  Sometimes, that light comes in a tangible gift.  That's the only explanation I have.  My tree is still up.  The lights that adorn it still twinkle.  The pictures of Christ, the thoughts of Christ...those are still there too, yet something is different; missing.

My one consolation is that the first of the year is almost here and that means another year edition of 29 Gifts!  It's coming soon so stay tuned!

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Tuesday, December 20, 2016

The Mind

Last week, Spencer and Sam went out on an adventure to make a video.  Spencer has been working so hard on his business and learning amazing things!  I am so proud of him.  He has really turned this past year and a half around for himself.  So many times, he could have just given up and so many times his dreams had to start over.  He persevered.

I love this video he made.  I have watched it a hundred times.  I love the message and everything about it.  He has had people who have spent 4 years in University studying videography, asking him for tips and techniques.  When they find out he has no formal training and knew nothing about video or cinematography until three months ago, they are amused...thinking he's teasing them but he's not.  

I think he has found his talent and purpose in life.



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Sunday, December 18, 2016

Christmas Bedtime Story- 2



Twas the week before Christmas, and all through the town
People were harried and rushing around.

You wonder what they'd been doing all year,
"Christmas is coming..oh my... oh dear!
My list is so long, I'll never be done,
I'll hurry and scurry, to buy for everyone!"

It was quite a sight to wander the stores,
People were busy with tempers galore.
I thought, "What a stress this season has become
Have they forgotten Christ and just come undone?"

I headed back home, to hide from the crowd
on my way out the door,  the bells rang so loud.
A box at the entrance was full of new toys,
for Angels with nothing, to bring them great joy.

I drove down the street and there to my wonder
some boys handing cocoa to the plow driver yonder
There's hope in this world, I thought to myself
as I passed an old woman who needed some help

I almost forgot the thoughts in my heart
but slammed on my brakes to give a jumpstart.
The weather was cold and my fingers were numb
but my heart sang with joy as I started to hum.

And then down the road, a lady in woe
with shovel in hand, she was clearing the snow.
I stopped without thought and took over the chore
and cleared out her driveway the snow was no more.

With hope now restored, my soul feeling lighter,
I got to my house, it seemed so much brighter.
I had just settled in with another 'to do',
When a knock at the door redirected my view

I opened it slowly, no one ever comes by
but with the view of the step, I wanted to cry.
Boxes of food and presents were there,
two smiling faces, a spirit to share.

I wanted to cry but showed awe instead
A loneliness lifted a soul had been fed.
These days have been hard, a little too much
But this was just right, a heart they did touch.

So, as this week starts to pick up speed,
Heading straight into Christmas, remember this plea.
There is more to this holiday as you already know
It's the love we give that sets the world all aglow.

It's not always easy this season of gifts,
Everyone's love is what makes the shift.
A big Merry Christmas and Happy New Year
One day out of many, we'll be of good cheer.

                                   Kat.







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Thursday, December 15, 2016

Here he comes...

This morning, little Rowan passed away.  His dad and siblings made the trip from Texas to Seattle just a couple of hours before he passed.  It has been a battle for this family and I feel sad, very sad.

This boy inspired more Faith, Hope and Charity in the light he spread to others just by being himself, than most sermons I've heard.  He was chosen to carry a special message to those who knew him,  I believe.
Rowan Windham- Image: Carrie Windham, Nicole Shen
I love this poem by Henry Van Dyke...I love how he blurs and softens the edges between life and death.


For 20 plus years, we lived with the clinical picture of Shwachman Diamond Syndrome until the gene of Dyskeratosis Congenita was found.  The two diseases masquerade as one another so it was a long road to the discovery.  I never take for granted, the fact that my kids have done so well.  I know that the situation can change quickly and without warning.  In some ways, I feel guilty that I get to have my kids so close and so healthy compared to the short 10 years, Carrie was able to have Rowan.

I have received the majority of Shelbie's bone marrow biopsy reports back and other than another drop in the number of cells her marrow is producing, it looks stable.  No cancer.  No lymphoproliferative disease, no myelodysplastic changes.

I received a call this morning from the Cardiologist.  They were able to pick up on all of Spencer's recent heart events even though the computer hooked up here at home seemed to be malfunctioning.  I told them we hadn't started the Cardizem because I didn't have a good feeling about it.  He said he was very relieved that we hadn't started.  It would have lowered his blood pressure and it could have had detrimental side effects.  I am so grateful I was in tune to know.

They are getting a little closer to understanding what is happening to his heart, they believe it is mostly due to a poor functioning nervous system.  In addition, he is having electrical issues and one moment his heart is too slow, the next it is too fast and in between it flutters and stalls.  They confirmed that the one medication he is on is not causing his chest pain, his heart is causing his chest pain and that worries me!  They are going to continue to treat the Bradycardia, as they would rather he suffers with a fast heart rate than an extra slow one. We will not treat the Tachycardia at this time.  He told me his heart makes abrupt changes that they rarely see so that is confusing them.  They had one episode show up where is heart went from 45 bpm to 175 bpm without a steady incline  as you would expect.  That is worrisome.  He hasn't  been physical at all for two weeks or more because he has been not feeling well.

He assured me there are still things they can try to get things back in order.

Shelbie is having another rough time with a swollen, hot to the touch leg again and very high blood pressure just as she did prior to her stroke.  I kind of feel sick over it.  This afternoon, she had to lay down because the room wouldn't stop spinning...again, another precursor  of the stroke last month.

It's been a hard week!

This morning though, Spencer and I made it to the temple with three family names to do!  It was a peaceful time despite the rocky rest of the day.



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Tuesday, December 13, 2016

Peace for Sale

My home teachers came by on Sunday night and the question was posed, "If peace were on the auction block, what would it sell for?"

Hmmm...that's an interesting thought.  What if Peace and the other virtues like Faith and Hope were all up for auction, joined by Happiness.  Which one would claim the highest bid?  If you could, which of these would YOU buy?  Would Peace be the first thing on your mind?

I have thought about this a lot.  If I was out shopping the Virtues, I would probably choose Happiness, at least as an impulse purchase.  Don't we all just want to be happy?  Don't we all compete to some degree to show we are the happiest?  I rarely hear people say anything but "I just want to be happy."  Or we say to people, "I sure wish you were happy."  "I would give anything to see you happy."

Never have I heard, "I just want you to have Faith."  Maybe it's been said...Actually, I may have said this to one of my kids but really, it's almost always about happiness.

Hope?  Well, of course that word gets tossed around like confetti..."I hope we get those tickets before they sell out."  "I hope it doesn't snow today." Hope is an easy illusion to create if we aren't careful.  To me, Hope is the twin virtues.  Hope can be flimsy, the kind we think nothing of.  Hope in Christ is something altogether different and that, has some substance to it!  So take care to differentiate the Hope you are out shopping for.  

And then there is peace.  If you think about it, peace would be a nice possession wouldn't it?  Not just to try on every so often to make sure it still fits, but to have it on like a cloak of security, keeping us safe from all the other negative emotions that rally for our support.   Peace is understated and underestimated.  In fact, the more I think about it, the more I think Peace is worth top dollars these days.  It's so easily tattered just by opening the daily news.  It can hang by a thread at the first sign of trouble and anxiety and when we think it's long gone, we give away its room with store bought happiness and with that, pretend that the fulcrum on which our life balances, stands steady once again.

Peace.  I wonder how much Peace would sell for?  What is it worth to you?  Perhaps, in the purchasing of Peace, a little quiet might be thrown in the bag as a December special.


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Monday, December 12, 2016

Bless His Heart

It's a crazy time for Spencer and his poor heart.  Today was especially hard for a number of reasons.  He is having so many 'events' that he has to download the computer connected to his ILR multiple times a week, today it was multiple times in one day!  They have it set to 4 events and then you have to download the information to the Hospital so it doesn't overwrite itself and erase the data.  He has been having events all day long!! Pain, Dizziness and on the verge of passing out all day.  His blood pressure is so low but his heart rate is high or normal.  He's been hanging out at 95/40 with a heart rate of 75 mostly.

He was suppose to start a new heart medication today but I don't have a good feeling about it so I told him to wait.  It is to treat his Tachycardia- fast heart beat but the side effect is a lower blood pressure. There is no way, he can afford to have a lower blood pressure.  The other medication he is on is to treat the Bradycardia- slow heart beat, by bloating up his arteries by retaining salt and fluid so there is an increased pressure and a faster heart beat.  I don't really understand all that but it's not exactly helping much I don't think.

I asked the Pharmacist about both medications.  Spencer has been having chest pain frequently and he thought it was the medication he has been on.  The pharmacist said chest pain wasn't listed at all for side effects.  So, it's likely a 'real' problem with his heart, not medication induced.

Tonight, he said, "Mom, should I take this new pill before bed so I can just slip quietly away through the night?"  He was joking, as he usually does but I burst into tears.  It's just one of those days.  I wish there were answers.  I wish there were answers for him and I wish there were answers for other kids I know who are suffering.

If you've been following along for awhile, I posted a couple of months ago about a little boy who needed some prayers.  His name is Rowan.  The second bone marrow transplant worked but he has a fungal infection in his lungs, he is on constant dialysis because his kidneys were destroyed by the chemo drugs, he has lost his hearing, he has a blood clot in his femoral artery, an infection in his central line that has spread to his blood and a host of other problems.  This morning, they thought they would need to intubate him because he is struggling to breathe on his own.  His body is filling up with fluid and he is one tired little 9 year old who has spent the better part of this entire year in the hospital.  I haven't stopped thinking about him or his sweet mom who has never left his side, not even once!  They are in Seattle but the rest of the family is home in Texas.  She orders things she needs from Amazon so she doesn't have to leave him.  I just can't even begin to understand how she is doing this all alone.  Her husband is taking care of the other kids at home but he just had surgery and three weeks ago, her mother died unexpectedly.  It's so much!  It's amazing how much the human body can take and still remain alive.  I pray so hard for this family; they have a faith that I have never seen before.

Somehow, things will get settled for Spencer.  As much as I don't want him to have surgery, I feel like we are running out of options to keep his heart beating in a regular and consistent manner.  I really feel like it's time to do some intervention.  It's affecting his quality of life.

He is also getting sicker and sicker with his GI problems.  Even gluten free food makes him really sick.  Rice, plain old rice makes him really sick.  There is literally nothing he can eat that doesn't make him sick and weak.  It's frustrating for him.  I have tried so hard to fix FODMAP foods.  I didn't think it was going to be a miracle fix but I did think we would see some small improvement.  I called in to our GI doc tonight in hopes that she will call me back tomorrow with a miracle in mind.

So, that's that...Oh my job interview I was suppose to have today got postponed...maybe Tuesday.  I got a call back on another job I had applied for a month ago!  I'm not sure when the interview will be but they said they are interested in talking to me.  The interview tomorrow is for a drafting position in the city but he would let me work from home as long as I met his deadlines.   It is only part time.  The job I got a call back on tonight is a writing/research position for a Marketing Firm, specifically writing articles on women's health issues.  I'm excited about this prospect.  I love writing and I love researching!  We'll see.




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Sunday, December 11, 2016

Christmas Bedtime Stories

Here's the first post of Bedtime Stories.  All the stories I write here are true but names have been changed.  These stories have either happened to me or someone close.  Enjoy a bedtime story and remember to light up the world this week with a little Christmas.

There's Room Here.

The sweet voice of a young girl could be heard spilling from the cell phone her mother held to her ear.

"You want to buy Christmas for some kids?  I think that's a wonderful idea honey!  You are so thoughtful.  Let's talk about it when I get home from work?....Yes, that is a brilliant idea!...I'm not sure I know any kids but we will find some.  I need to go honey, I'm at work.  Let's talk about this tonight!  I love you!"

Anna, a 14 year old with Autism, has a heart of gold.  Her heart dwells close to the spirit and with all the innocence of a 6 year old, she begged her mom the rest of the night to find some kids she could buy presents for.

It hadn't exactly been an easy year for the family.  A newly wed of just over a year and a family of blended souls brought a new kind of work and energy to Jillian's world.  She herself had three daughters and a son.  One daughter with Autism, another girl with Asperger's.  Her son had recently moved in to live with them after a couple of years living with her Ex.  Jillian's new husband had 4 children of his own with two still at home.  They all lived in a small but comfortable home.  They didn't have much but then again, they didn't seem to want for much.

A recent series of misfortune found them with limited income and months to struggle along while Jillian's new husband rehabilitated himself from a recent accident.  It was just her nursing income that kept the large family afloat.

Jillian is the kind of girl who spreads joy and laughter wherever she goes.  She loves deeply and sees the needs of others even before you know yourself of the need.  She never has much but she always finds a way to give and then give some more. I have only known her a short time but I know she buys yarn to deliver to the woman she cares for in the assisted living center who can't get out but loves to knit.  She will run through the drive through of a patient's favorite restaurant and drive it up to her isolated home, over an hour away, just to make her day a little happier. She never questions, she never complains.

Little Anna talked all night about the kids she wanted to surprise with Christmas presents.  Though Jillian didn't want to disappoint her with the details of their dwindling bank account and few presents for themselves, she committed to doing some small thing for an angel or two in need.

The following morning, the phone rang as she was rushing off to work. Her husband answered the call.  Within a few minutes, he called Jillian to say that a social worker had called to see if they could take in two small children.  "Hey babe?  I told them we would.  They arrive tonight."

I'm not sure I know many people who would jump aboard an idea of adding two more children to the mix, two more children who came with nothing but the clothes on their back, two more children to take up room in a 3 bedroom house that already kept the crowded family hungry for space; but Jillian did.  She never considered the words, 'I'll think about it.'  or 'Are you kidding me? Two more mouths to feed?' and she didn't even consider where they would put them.  Of course there was plenty of room in her big heart.

That evening came and she hurried home after work.  Together, they made a make shift room on the end of the basement storage room.  With her crafty skills, it was a humble but loving space for the little ones.

Anna could hardly believe how much this night already felt like Christmas.  Two kids coming to spend a few weeks was more than she could hope for. There's something about Anna that softens the world around her and draws the light out of everyone she meets.

The two children arrived and it was as if the Heaven whispered to the family that it was meant to be. The children, never knowing what a loving family was, were gathered in close as if they were the greatest gift of the season, as if they always had a place here.  A little house has more room than you think for the least of those around us.  Sometimes, Christmas comes packaged in the most extra-ordinary way.



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Saturday, December 10, 2016

Sam

Sam is moving out in just a little more than 3 short weeks!  Gah! 

I'm not looking forward to him being gone...I know, he's 3 miles away but I don't care.  I like having my kids around.  They are all so much fun and we have a great time together.  But, moving out is part of Sam's 'must', and it will be good for him.  

It's been fun to tease and annoy him as I try to cram in some last minute smothering.  For example, the boy doesn't like the kitchen.  He must think he is allergic to everything in it except for the food I lovingly prepare for him so that's got to change.  I keep telling him he needs to learn how to cook good, healthy food so he doesn't gain the freshman 15.  I have asked him to make a list of foods he wants to learn to make and I will teach him.  

Well, Sam is Mr. Independent so not surprisingly, he set off to teach himself a few things.  But here's the thing about Sam, he loves Life Hack shows.  He is all over the unconventional way of doing things, even simple things.   One of these last few days, he decided to make some scrambled eggs.  I wasn't home and didn't get to witness the event but my people tell me it was comical.  He decided to crack the eggs into a Ziploc bag, mush them up in the bag, add some grated cheese and I think he threw in a little ham.  Then, he put it in the microwave!  

I understand it was disgusting looking, and undercooked but to his credit, he ate the whole thing even after it slimed out of the bag and onto a plate! 

A couple of days ago, he decided to make a gourmet version of Ramen by cracking an egg into the water while it boiled which isn't a bad idea but my kids drain all the liquid out after the noodles are cooked and then add the seasoning.  Once he drained all the liquid out, he was left with a bowl of stringy eggs and noodles with beef seasoning.  He then proceeded to add Franks Hot Sauce and about a Tablespoon of garlic salt!  Ha ha...I tried so hard not to laugh and again, he didn't enjoy it much but he ate the whole thing.  Then he said, "It wasn't bad but what are some other foods I could cook up in the Ramen?"
"Is that your master plan?  Adding whatever you can find to a bowl of Ramen?"
"Well, it's not a bad idea..."
LOL...that's a horrible idea!! But, I gotta hand it to him for trying.  

I suggested we just stock up on paper products and maybe one recycled Tupperware bowl for his microwaved Ramen.  That way, he doesn't have to over extend himself with doing dishes...ain't nobody got time for dishes, especially a young bachelor like himself. Although, I sense he's going to get a hankering for some grilled cheese which shouldn't take him too long to master, I'm sure it will have Frank's Hot Sauce in it...I may have to splurge and buy a frying pan. 

He's getting better at the laundry, he hasn't Facetimed me in a long time for instructions on how to turn the washer on but still needs to work on keeping his room picked up.  No one wants a slob for a roommate!

Sam is the best to harass over text messages.  I love reminding him over and over about things he already knows like driving carefully, wearing a seatbelt, being a gentleman to the girls and so on!  It bugs him so much but gives me so much satisfaction.   My favorite thing to do is text him only in emojis.  He really hates that! 👀💓👇.  I guess since he won't be here everyday, I will be able to excel at my emoji texting! He's going to be so surprised on his first day of College when I send him a good luck text! 

I'm just going to miss him.  When he comes home after a night out, he always wakes me up in the strangest ways.  He used to whisper which made no sense because I'm deaf in one ear and hard of hearing in the other but now he says, "Hey! Wake up! I'm home!".  Last night he patted me on the head to wake me up!  Some nights he slugs me.  Other times he shakes me and when he's feeling tired and lazy he just stands there till I feel someone staring at me and wake up in a cold sweat!  You just never know with that kid.  He is so funny though. Sometimes, I'm awake but  he doesn't know that, so I just lay there and when he is about to shake me, I say in a soft, creepy voice, "S-aaaaa-mmmmm." 

He's so fun to tease, the house just won't be the same without him here everyday.  I'm certain I'll see him on laundry day and when he gets tired of Ramen and Frank's Hot Sauce; for sure when he runs out of gas money.   









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Thursday, December 8, 2016

Bits and Pieces

I feel like so much of life is just a do-over.  It's hard to stick to anything very successfully.

The FODMAP diet the boys are suppose to be on...Ugh...I was off to a grand start just before Thanksgiving and thought it was going to be so great but it wasn't.  Spencer didn't have his heart in it and in order for this to work, there has to be some level of commitment besides me as the head cook.  
A few days ago, after being oh so sick, Spencer decided he needed to seriously try the diet.  So, we started again.

And again, it's not the easiest thing in the world.  Why is it that gluten makes everything better? Gluten even has the power to make a bad day better.  Without gluten, bad days remain bad days!  Just kidding.  Seriously though, life is better with chocolate chip cookies but those are not FODMAP approved.

Here we are, a few days into it and there is no change in Spencer's health.  He is just as sick after every meal even without sugar, gluten or dairy.  I have a bad feeling that nothing is going to help.  I can't imagine what it feels like to be him.

Shelbie had her transfusion this week.  It took 8 hours!  Next month, when he bumps the dosing again, it's going to take forever! I don't even know how the nurse will be able to come and stay for as long as she is suppose to.  I feel very confident in doing this myself, even taking vitals every hour but still, that's going to be a big ol' day and at this point, the insurance company insists that a nurse is here.  She had another reaction last night, this time a fever.

Out of the blue, I got a call from a new doctor who said they wanted to see Shelbie in a couple of weeks.  The new doc specializes in autoimmune diseases.  That ought to be interesting for the whole family!  Spencer's eye is getting bad again from his autoimmune problem.  Poor kid can't seem to catch a break.

I have an interview for a new job on Monday in the city.  Like any job interview, I'm nervous and not sure I will be able to do it.  This is not the job I was expecting.  I applied for it over two months ago and sent in my portfolio and even  heard back that he was impressed but that was it.  I had written him off because he said he would work out a time to meet but that was the last I heard from him.  His call today was surprising.

I'm not sure what the job pays or any details but it would sure be nice if I could retire some cleaning work.  I hurt my shoulder a week ago and I have been in some serious pain, so much that I can't hardly sleep.  Even a cocktail of anti-inflammatory meds and muscle relaxers only tease and taunt me.   I toss and turn all night, every night.

Last night, the power was out for a few hours from 10 pm until after 3 am.  My house has so many gaps, you can feel breezes in about every room so the -4 degree temps were making things really cold.  The boys hauled their beds down to the living room,Shelbie took the sofa and I curled up on the loveseat and we all chilled by the fireplace talking till we fell asleep. We were toasty enough but the rest of the house had frost on the walls!  The kids said it was one of their favorite nights and I actually got three straight hours of sleep!

That brings us to the end of a long week!



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Monday, December 5, 2016

Memory Lane

At dinner on Sunday night, I was asking the kids what their favorite Christmas memory was of giving or receiving.  None of them could think of anything.  Nothing.  I kept pressing them and bringing up my own memories.  I could have made it all up because they don't remember much.  I'm not sure if they all have the brains of an 80 year old or if the stress and struggle they have continually lived with, has short changed them in the memory department.  It's a little unnerving if you think about it.

At any rate, Spencer jumped on the request with all sorts of made up stories himself.  He was coming up with the funniest stories that closely followed the story line of some popular Christmas shows...

"I remember that time we were visiting a homeless man and he said he really needed some construction boots so we went to the store on New Year's Eve and said to the clerk, "Hey I need to buy these boots for this homeless man, it's New Year's Eve and these boots are just his size...  Or remember  when it was snowing one night and we lived out in the country and we heard this train coming down our road on Christmas Eve?  Yeah, it was weird because we didn't live by the train tracks but then we heard these voices in our heads and they said, All Aboard the Bipolar Express!  Remember that?  We all believed we were hearing voices!  It was such a fun trip!"

He just kept rambling on with these made up stories and we were all laughing so hard!  I can't remember when we actually laughed so hard, tears were running down my face.

Then Shelbie chimed in, "My favorite memories were when mom went through her manic phase and woke us up at 10 o'clock at night in the summer to go to the Drive In or when she would take us sledding at 1 in the morning on a Friday night and then to Jack in the Box for treats after!"

Of course that spurred them on to remember other details like when we went to Victoria on vacation and filled the back of our Volvo station wagon with purple star fish and they ended up climbing all over the car when we went for dinner. Or, when I went running with them into the ocean with all our clothes on.

Those are true events but I have no idea where they got the notion that I am or had Manic phases!  I laughed and said, "Ahhh, why do you think I was manic?"

"Well, what mom wakes their kids up to do crazy things like that? "
"A mom trying to make some good memories happen in between all the bad ones...!"

Oh well, I don't care if my kids think I'm crazy...they haven't forgotten the crazy things right?

It's funny how we forget so easily, not only the good things but the bad too.  After we had laughed ourselves silly, I reflected on how blessed we were to forget some of the hard things.  When you add up what our little selves have been through in 8 weeks, it's staggering and sobering.  In just 8 weeks, Spencer's heart stopped, had a procedure to place the loop recorder.  Shelbie had a stroke.  Sam's brain is falling into his spinal chord, 3 bone marrow biopsies, pneumonia, ear infections, Spencer's vision problems with his latest autoimmune disease!  That's an amazing number of trials and worry in such a short amount of time.

Not to mention in all of that...Shelbie's business is flourishing, Spencer started a new business that is taking off, Sam got registered for College and a new apartment, and I have managed to still work 45 hours a week.

Sometimes, it's interesting to look back on where we have been and to count all the ways we have survived this messy life and even thrived!


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Sunday, December 4, 2016

Christmas Bedtime Stories

On my other blog, I had a Christmas tradition called Christmas Bedtime Stories.  Every Sunday in December, I posted a personal story or essay of Christmas blessings and wonder.  It has been one of my favorite writing traditions and I wanted to bring that tradition to this blog.

Mary

Mary, did you know that your baby boy has come to make you new?  This child that you delivered, would soon deliver you?
Art by Liz Lemmon Swindle


In the past few weeks, I have been privileged to set up countless nativities in the homes of clients and friends.  Perhaps in the careful placing of these displays I have let my mind wander back to that moment so long ago, to the mother of Christ, Mary.

 At times, I feel overwhelmed and anxious for her as I think of the load she was called upon to carry. I wonder if she ever questioned how she could be the kind of mother Jesus needed her to be? At other times, I feel a reverence and peace that she knew and loved her Father so much, she felt nothing but peace. I wish I knew her, more of her deepest thoughts.  I think of that night spent searching for a place to rest, as the moments of a humble birth stood at the door of her soul.  I think of what that Manger must have been like.  Over and over I think of the words from Matthew, " Foxes have holes and birds of the air have nests; but the Son of man hath not where to lay his head."

Lately, I've been thinking that Jesus did have a place to lay his head. I like to think that Jesus spent very little time in a cradle filled with hay, but rather in the warmth and safety of his mother's arms.  I like to think that Mary never put him down.

I can't help but wonder where in this month or any other month, do I set the Saviour of the world?  Does he lay aside in a wooden cradle, on display for all to see, like some trophy that sets us up as a faithful follower yet, our actions trail far behind when no one is looking? Or, do I hold him close, a treasured gift, allowing him to make me new, to deliver me from my own self; and before I realize, it is I who is cradled in His safe arms?

December is a month when the rough edges of the world around us are tempered and polished with the birth of a baby so long ago.  It's a time when, for at least a few weeks, the lonely are visited, the poor made rich through an abundance of kindness, needs are met, hearts are softened, broken souls are mended and the light of Christ escapes through our cracks of imperfection and fills us all and for a small moment, no one is lost and everyone has a place to rest; in us.  In Him.

Thomas S. Monson said this of the love of Christ during the month of December, "You can hear it. You can see it, You can feel it."

December has always been a time of reflection for me.  It is just as President Monson suggests; I have heard Christ this year, I have seen his works and love and I can feel him close.  May we ever strive to hold our Saviour close and not only watch over him but follow him, become like him, be constant like him.

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Friday, December 2, 2016

Done for a year...hopefully.

Thank you for the extra prayers!  This was probably the best bone marrow biopsy we have had in a very long time!  Even the ones with sedation.  I'm convinced the medical staff in the room make just as much difference as the medications used.  In Seattle, they sedated the kids but they weren't super friendly people doing the biopsies and 5 minutes after the biopsy, they were being moved to a hard plastic chair to finish waking up!  Not cool.

Today was better than I could have planned it in an imperfect world such as it is.  Still hard and not fun but manageable.

If you remember, Sam's was a disaster with so much chaos in the room.  This time, it was just the people who had to be there, no extra observers.  The PA doing the biopsy, Renee was so amazing with Shelbie. She was mindful and thoughtful with each step and helped Shelbie feel strong and capable to get through it.  The nurse suggested some quiet music.  It was as if everyone was reading my mind with all the things that I thought might help.

The very hardest part was even before the biopsy started.  They couldn't get her tissue numb with lidocaine, just to make the cut in her skin.   It took about 6 full syringes and in addition, they finally brought in a spinal needle that was super thin and about 9" long and inserted that right around and up to the bone and she just kept pulling it in and out and pushing it back and forth.  Yes, Shelbie felt that needle going in and out even after all the lidocaine they had already pushed.  That was the hard part.  She wasn't screaming, not at all but clearly not doing well.

I actually think that spinal needle made the rest more bearable.  There was a tense moment for her when it first got started so I went over to her side and knelt close to her and I walked her through some guided imagery and helped her keep her breathing in rhythm.  Since the kids were little, I taught them to disassociate from the pain so they could manage it better.  Shelbie and Sam are the best at it if they have some guidance.   After we got that going, she did awesome!  Not even tears...from either of us!  She only had to have 40 mg of Fentanyl, the boys had twice and three times more than that.

Poor girl though, her hip is a big bruise because the procedure was pretty rough.  I have been told for the past 20 bone marrows on her that she has the hardest bones they have ever done. She bled a ton and it took everything Renee had to keep twisting that needle deep into her bone.  Ugh...

I hope we get stable results.  The biopsy part, where they take out a core of the bone seemed weird.  The boys' came out like a neat column of bone, Shelbie's came out like mush and fell apart which seemed odd considering how difficult everything was to get to that point.  I hope it's not a bad omen.

All in all, I'm happy with how things went.  I'm happy that the spirit in the room was calm and quiet, it makes so much difference.  I can't say enough about how much I appreciated Renee and Karissa.

Good news though...they just changed their schedule so they will be able to do all three kids, one right after the other next year!  Such a blessing! A long hard day but worth it.

The roads home were dry and clear.  Lots of blessings today!

Last night, we got to Salt Lake just minutes before the lights at Temple Square shut off.  I have never seen them in person so I really wanted to stop.  It was a very fast stroll through the grounds but so worth it!










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Thursday, December 1, 2016

Bone Marrow Biopsy #3

The biopsy we've been putting off forever has finally arrived.  Tomorrow, Shelbie will have her bone marrow biopsy at Huntsman's under conscious sedation which really means, she will be conscious that the sedation they use sucks!

I have a special little place in my heart reserved for Shelbie when it comes to bone marrow biopsies.  She was the first of the kids to have one.  She was the first to have one without any sedation; conscious or otherwise.  I will never, as long as I roam this earth, forget that day.

It was at Primary Children's Medical Center, her platelets were at 1, a number that carries with it extreme risk for spontaneous hemorrhage. She was 6 years old and it was her first biopsy.  Samuel was just 5 months old and sat beside the bed in his carrier.  Two nurses, laid their arms and upper body weight across Shelbie's back and held her arms to her side.  Another nurse stood at the foot of the bed, tethering Shelbie's legs as she was flailing and screaming.  I knelt down at the head of the bed, cradling her little, sweet face in my hands, and with tears streaming down my own face, stared into her eyes and sang a shaky version of,  I Am A Child Of God. I could hardly cry out the words.

With every scream, as the doctors removed a sample of her marrow and a sliver of bone, I pled for Heaven to help her, to make this end.  I feel those devastating moments of extreme pain and sadness even still.

On that day, I vowed that my kids would never experience that again, only to my horror, just 9 months later, Samuel would undergo that same, procedure, awake.  I had no idea back then, the course our life would take.  That was the last day I stepped foot in Primary Children's Hospital.   I went to great lengths and drove an extra 2 hours out of my way to St. Lukes in Boise, and then 11 hours to Seattle because I had grown to hate that place.  I still can't walk into that hospital without feeling extreme anxiety, panic and guilt.

So, tomorrow is going to be a hard one for me.  It will be a hard one for Shelbie.  Not only will the procedure be hard but waiting for results will be difficult this time around.  Normally, I don't stress a whole lot about the time we spend waiting to hear if their marrow is stable for another year.  This time, it's different.  Shelbie has so many symptoms of lymphoma and this will be the first time since all of her difficulties increased this year, to know for 100% certainty she is cancer free.

I know, as I sit beside her bed tomorrow morning, I will see that little terrified, 6 year old angel from the past, who has endured so much pain and affliction and it will be almost more than my tired, mamma heart can manage.  I will likely have to leave for a moment afterwards to collect myself.  I'm not at all excited to go through this with her...I don't get angry about many things but bone marrow biopsies done without complete sedation angers me so much.

At any rate, this will hopefully be our last trip to Utah until the second week in January.  I am so looking forward to the fact that the kids can try to feel like  normal kids for a few Christmasy weeks. We've had a terrific winter storm and my lousy car has me knotted up about making this drive.  It took me 20 minutes this morning to drive 4 miles to my client's home. Hopefully,  it will be uneventful tonight when we finally get on the road.  The boys will be holding down the fort!

I hope our prayers are heard and swiftly answered, that we are all safe in our travels and if there are a few Angels with nowhere to be tomorrow morning, and nothing to do, I hope they choose to be with Shelbie.  She deserves a little extra help from Heaven.




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