Thank You

We have been overwhelmed at the kindness and generosity of so many people, even people we have never met!  I was daunted by the task of thanking so many people and wasn’t sure how to go about it.  My sister suggested doing a blog post.  

Mary Deane and Hyrum are doing very well!  We feel so blessed to be home together as a family.  Hyrum experienced no complications from his surgery and is healing great!  We meet this Friday with his surgeon to see how well the lung is expanding to fill the empty space.  The doctors are still stumped by Mary Deane’s uncontrolled bleeding.  We are waiting to hear back from the hematologist to get her seen and see if there are any blood disorders.  Now that her own blood has cycled through her body we can get some more tests done.  They have both shown us such resiliency.  Clark has as well!  He was patient through all of it and is happy to have his best buddies back to play!

Prayers, notes, meals, money, hugs, calls, and more have been offered on our behalf and we are humbled at such service.  To be honest, it’s hard to accept and its hard to ask.  We value our independence, as does anyone but it’s opened up new relationships and helped us to feel God’s love through others.  I’m in awe at people’s goodness and it has inspired us to search for more ways to serve others.  

I’ve thought a lot about the person whose blood was given to MD.  At first, it was hard for me to accept that a stranger’s blood was in her little body but it literally saved her life.  I can’t thank them personally but I am grateful to all who donate blood.  I even had a sweet friend go out donate blood the same day MD received a transfusion in honor of her.  I was so touched at the gesture.  

So, thank you all.  Really.  We love and appreciate each one of you.  

My Pearl of Great Price

The lessons always come. They always do.  We have been through so much with Mary Deane in the past that I knew God put those pearls of great price for us to find within the trial, we just had to look.  

I sat in the hospital room with Hyrum post-surgery.  My mind was reeling with everything that was happening with our family.  I said a private prayer while Hyrum dozed in my numb arms: "What do you want me to learn?"  I waited. I bowed my head in Hyrum's direction. And I listened. It was then that I felt his chest widen then relax, widen then relax, widen then relax.  My eyes opened quickly as I realized, oddly, for the first time what had just happened.  I listened: clear, long breaths, produced by the very lungs that were just cut, reduced, and put back together. I joined him and for what felt like the first time, really breathed; both of us widening then relaxing our lungs. Nothing short of a miracle. That was my witness and that was my lesson--God is in everything:

Hyrum's lungs expanding to fill the newly emptied space--that is God.

The ability to love someone so fiercely that you feel like you can hardly breathe and 
your heart can't sink any further--that is God.

A wordless hand grip from Brendon because he understands--that is God.

Stripping worries one by painful one and submitting them to Him--that is God.

A surgeon's capable hands producing miracles--that is God.

A mother to mother me and my children --that is God.

Others offering their faith and praying for us by our names--that is God. 

Women who instantly drop their life ongoings to be our rescuers--that is God.

Having someone to love Clark in my absence--that is God.

Knowing how quickly a sacred life can slip away and what a gift it is to simply be and to
simply experience--that is God.

To be utterly washed over in panic and then restored back to peace--that is God, even if has to happen over and over.

A nurse providing two cots to rest our 30-hours-without-sleep-bodies in a private room while our baby was in surgery--that is God.

The chorus of birds singing at dawn as we rushed to the hospital--that is God.

Putting my daughter's life completely in His hands--that is God.

Cleaning up blood with ease--that is God.

Knowing that bodily harm and pain can bring spiritual strength and joy--that is God.

A patient baby after a major operation--that is God.

Watching Brendon strengthen his testimony and learning about his sacred lessons learned--that is God.

Being able to see the lessons during the trial and not just after--that is God.

Time flying by when it should have been the exact opposite--that is God.

Talking things out over and over with my mother--that is God.

A five year old wise enough to listen to her body--that is God.

MD surviving so much blood loss--that is God.

Being together as a family and knowing that we are eternal no matter how long our time together is here on earth--that is God.

Feeling the Savior's love--that is God.

The miracle of turning over one's will to Him because of the Atonement--that is God.

These are my pearls of great price. The price was great.  And it was painful.  But I wouldn't change anything. God is there. And I would give everything and go through anything to know Him. He is in the storm and in the break-through rays of sun.  

X is for eXoskeleton

My little Hyrum finally has a quilt of his own!  This quilt has been in the making for the past two years.  And no, I haven't been working on it that long.  I would quilt on-again-off-again.  But, nothing like a deadline to get a project done!  My sister Katy, as in No Big Dill Katy, has been doing a Sew All 26 series and asked me to contribute for the letter X.  So here we've got a beetle with an eXoskeleton and small, red X stitches on the little tucks running both vertically and horizontally.

This is entirely quilted by hand and done freehand.  I love the imperfection that freehand quilting gives.  It makes it cozier and tells a story.  The beetle and its spots are hand appliqued. I made the pattern after the image of an actual beetle. The straight stitch quilting and the tucks on the perimeter frame the beetle, but closer to the insect is quilting that follows the outline of the hard-shelled critter. The backing has some patchwork, which is new for me.  I usually just keep it simple and use one fabric.  But I liked how it turned out.  It frames the silhouette stitch of the beetle.  

One of my favorite parts of quilting is seeing all the extra wrinkles after it's washed and dried.  This one has an ample amount of wrinkles.  It shrunk quite a bit more than I was expecting, even though I pre-washed.  But the extra crumples were worth it.  

I have a thing for beetles.  I mean, their skeletons are on the outside! Pretty cool.  The patterns and colors are endless in their variety.  Hyrum enjoys the stark contrast in fabrics and actually played peekaboo with the quilt for quite awhile yesterday. I feel like my quilts are a part of me.  They start long before I even touch a needle to fabric.  I often daydream of different designs I want to embody in fabric. I then spend hours and hours cutting, threading, stitching.  So I love that a part of me is wrapped around my babies while they sleep. The next best thing to my arms.  

I am Their Pupil

I love these three fiercely.  They have made me a mother.  No other three beings have challenged, taught, and pushed me to be the person I should like they have.  And for that I am humbled at their patience with me.  

Mere Moments Examined Against Eternity

I never know when it's going to rise up from the creases of my mind to that inescapable place.  That place where I'm forced to face it. Because it is always there: CF will one day take her life.  Most the time I can successfully keep it tucked in one of those aforementioned creases; a safekeeping from my heart.  But, then there are those moments when I have to face it.  I have to release the pressure that builds up.  And then I cry.  I sob.  I shake.  I ache deeply. 

At times, I lay in the middle of the night with peaceful yet painful concern for the duration of her life, and it makes me ache for any wasted time.  I turn so eager that I want to run in and wake her just to hear her happy report of every life detail.  So we can sign "I love you" with our fingers.  So I can feel her sweet kiss on my cheek.  So she can have and feel my fullest attention and love.

I lay there making resolutions to not waste my moments with her, with each of my children.  Because that's what they are: mere moments when examined against eternity.  But gratefully, and do I ever mean gratefully, though mere moments here, we have forever there.  And that's when I begin to see how death has and will lose its sting.  It's because it makes life more cherished and beautiful.  It shows me the eternal.  

Shout For Joy For Your Body

The pressure on our bodies is everywhere.  To lose this, change that.  Never to be satisfied.  It's sad, and it's ugly.  I find myself criticizing my own body but I try to stop before it seeps in permanently.  My perspective has changed gradually over the past 5 years of being a mother but most dramatically over this recent year.  I credit it not only to being a mother, but to Mary Deane's Cystic Fibrosis.  CF reeks havoc on the body, on almost every organ.  MD deals with pain I've never felt.  She takes 20+ doses of medication a day (even more when she's sick) just to keep her body functioning, to keep it from getting worse, to keep her living.  I see firsthand how her body betrays her.  She spends hours a day doing CF-related things when she should be out running and playing carefree.  I am a part of two communities online--CF and g-tube.  I'm familiar with the struggles of CF but my eyes have been opened to all sorts of conditions requiring people to be fed via tubes: one husband can't eat due to tongue cancer, another child is completely immobile, another has a trach in order to breathe, and the list goes on.  I get only small glimpses into their lives.  I ache for them and their bodies that don't work like they should.  So, when my mind starts to criticize this body of mine, I reprimand myself thinking, "What do you have to complain about?  Your bodyworks!  Your lungs breathe easily. Your legs take you where you want to go. You are free to eat and taste.  You can see. Your gallbladder doesn't cause you chronic pain.  And it has co-created, with God, three other beautiful bodies. Don't you dare complain."  I marvel at the life outside and inside of me.  Yes, I've gained weight and collected more stretch marks and my body will never be the same, but for a most noble cause.  One that I am proud of.  I believe it is a sin to criticize the bodies God has given us.  We shouted for joy knowing we would get a body and come to earth.  Let's continue to shout for joy!

Hyrum Knudsen Jones

HYRUM KNUDSEN JONES

August 26, 2013 3:30AM

9lbs

20 inches

We are thrilled to finally have our little guy here.  He is as sweet as can be.  

Writing the Good and the Bad

“Write the good and the bad”.  This was my mother’s advice to me some months ago.  I haven’t stopped thinking about it, wondering how to make the balance between optimism and realism.  Lord Byron said, “If I don’t write to empty my mind, I go mad.”  I’m long overdue for a mind emptying.  

It’s been a  l o n g  year for our family.  We are now settled into our new home back in the states.  The move from Qatar was unplanned but meant to be, although hard to do.  It has been good for our family in so many ways.  Especially for Mary Deane’s health.  After watching it decline for nearly a year I was relieved to get her feeling better with adequate care.  The biggest struggle with her (behaviorally) has been getting her to eat.  Most days she eats three pieces of cereal and nothing more.  After four years of begging, forcing, pleading, and crying on both our parts we decided to have a g-tube put in--a surgery that creates a hole in her abdomen giving direct access to her stomach.  The surgery and following hospital stay were nerve racking.  She did well but it took time to heal and is still pretty sensitive.  For the first time she can now receive all of her enzymes to help her digest and we can get in some much needed nutrition. I was so anxious to have the g-tube put in that I was completely blindsided by my emotional reaction to it.  One of the nice things about CF is, for the most part, you can’t tell she has it by looking at her.  It has been one of those things I’ve held onto, knowing that it would help her to have a more normal life.  But now, she has this plastic contraption sticking out of her belly--a visual reminder that her life isn’t normal.  That first week after surgery, she walked so carefully with her shoulders slumped forward as she scuffled her feet to minimize the pain.  My four year old had turned into a 90 year old.  I thought our days of tickling were over.  Brendon didn’t play with her the same.  He told me he thought he’d never be able to throw her up in the air again.  Even Clark had to learn to play with her differently.  I could hardly stand it.  I hadn’t prepared myself for such a loss.  But, that week turned into a couple of months and as she slowly healed we slowly learned the boundaries.  I’m happy to say we still wrestle and tickle but with caution.  Sometimes it ends with accidental tears but nothing a good cuddle couldn’t fix (gratefully).  I now stop whatever I’m doing to watch Brendon toss her up and hear her giggle--something I won’t be taking for granted.  All four of us, especially MD are learning to adjust.  We are learning tricks to help her (and us) no doubt guided by the spirit.  Oh life!  I keep waiting for that space of time when we can just coast but it’s not meant to be.  Instead these experiences just intensify the good and the bad.  And I’m learning to be okay with that.

Thanksgiving 2012

My little helper.  I love the splatters on his face.

MD carefully taking one seed out at a time.  Telling of their personalities.

Piecing the bread for the dressing--something I did every Thanksgiving as a little girl.  

Brendon's favorite part of the holiday.

We got more than one generous invite for Thanksgiving but we decided to play it safe, health-wise, and celebrate at home, just the four of us--our first Thanksgiving in our new home.  The savory smells in the early morning brought hundreds of happy memories to the forefront.  I was on cloud nine.  Life was as it should be, all four of us together working to make a wonderful feast to share our thanks and our giving.  The kitchen counters were crowded with preps, spices, dishes, and food patiently waiting to be assembled.  As I danced (at times literally) from one end of the kitchen to the other I watched my children at the table piecing the bread for the dressing--my duty as a little girl-- and deseeding the pomegranates, occasionally policed by Brendon.  I was pleased as everything came together and it gave me an even greater appreciation for my mother's seemingly effortless work that she did each holiday.  

My greatest thanks this year is for our settling lives after a chaotic and trying four months.  Our stuff from overseas has arrived, we've bought our first home, we are moved in, MD is adjusting to her new g-tube and her health is improving, Brendon is enjoying his job, Clark takes it all in stride, our stress and anxiety levels are decreasing, and life is good. Life is very good.   

Mourning and Rejoicing

MD on her 4th Birthday

As I tucked my face into her neck, just below her ear, her shoulder met my skin and her giggle entered my ear.  I took a deep breathe in through my nose letting every scent of her comb through me.  It was sweet and salty with a hint of medicine. I tried to permanently register, never wanting to forget her scent.  Just in case. Just in case one day I would have to remember it.  

Cystic Fibrosis is a terminal illness.  Terminal is a hard word to accept.  Mary Deane’s health has become more serious this last year.  It was the first time I could actually see it take a toll on her outward appearance--circles under eyes, x-rays showing more scarred lung tissue, no weight gain, losing hair, not her happy energetic self, refusing to eat, distended and painful belly, and so on.  Three hospitalizations, two ER trips, and a surgery for a g-tube to be put in (a feeding tube that goes directly into her stomach) later and things are finally starting to settle down and we are seeing some wonderful improvements.  Along with some personal trials, all of this put me in mourning.  It’s a slow process with CF but it does kill.  I don’t know when she’ll be taken from us but I have daily reminders that this time is precious.  These reminders take me two ways--one to mourn and one to rejoice.  There is so much unknown about MD's condition that forces me to go through mourning periods knowing that I could lose her.  I don't know how to handle it.  I ache to think of the things she would miss.  I ache to think that I could possibly miss out on raising her.  It is times like these that I turn to the Savior and to the comfort  of his promised blessings and doctrine.  Joseph Fielding Smith taught: 

"Joseph Smith taught the doctrine that the infant child that was laid away in death would come up in the resurrection as a child; and, pointing to the mother of a lifeless child, he said to her: “You will have the joy, the pleasure, and satisfaction of nurturing this child, after its resurrection, until it reaches the full stature of its spirit.” There is restitution, there is growth, there is development, after the resurrection from death. I love this truth. It speaks volumes of happiness, of joy and gratitude to my soul. Thank the Lord he has revealed these principles to us."

That is possible because of the Atonement. It gives me such comfort and peace.  I don't understand it or its infinite characteristics, but I have a testimony of it because I feel it in my life.  But, Mary Deane and her illness also make me rejoice.  Each day is a blessing.  I’ve learned to not take for granted the gift of life.  Especially our interaction together.  That is what life is about.  Kneeling side by side in prayer--MD eyeing Clark making sure he’s doing it right, Clark wiggling all over and Brendon and I smiling at each other in contentment.  Or when their little hand quietly slips into yours as you walk.  Or folding tiny pieces of clothing knowing the bodies they will house.  Or watching Clark take bite after bite of cucumber.  Or the kids jumping onto our bed and sleepy bodies waiting for us to get the day going.  Or MD’s sincere “I love you, mommy” when she feels particularly satisfied or understood by me.  Or hearing panicked giggles coming up the stairs and fatherly roars trailing behind.  

I think both the mourning and the rejoicing are necessary as long as they point us to the big picture--the plan that this is why we are here, to learn and grow but to have joy.  And sometimes, I experience them simultaneously like that afternoon registering her scent.  I’m slowly learning to accept the hard with the good because most the time, I recognize the good because of the hard.  

More Clearly Blossomed

Swinging

Shifting from weighty to weightless

and back again.

Our senses revived

through the tender breeze and sway

and her suppressed laughter

opened and overflowed

allowing her childishness

to simply be.

Eyes lifted,

hers and mine together.

Forcing burdens to seep

into the earthy ground,

planting seeds of lessons learned

more clearly blossomed 

in future reflection,

but forever harvested.

The Holy Among the Messy

The sterile, but not so sterile-looking hospital shower has been my emotional-release refuge.  A 3' X 3' tile box--the only place protected from the unending intervention of well intended intruders. And my way of protecting our chickadee from seeing her mother's moments of weakness.  The spraying water is my advocate as is it muffles my sobs and relaxes my shaking shoulders.  

Three messy weeks have been mounting into these emotional episodes:  MD in a Utah hospital with multiple infections in multiple organs.  Brendon back in Qatar packing up our home and trying to figure out his career's future.  Clark with Grandma and Grandpa Knudsen wondering where his mommy and daddy are. And I am here with Mary Deane trying to keep my head above water.  The four of us are apart and homeless.  Despite the chaos, which seems to be multiplying, there is a surprising underlying peace.  It's been interesting to learn that such an oxymoron can exist, and should exist.  

There is holy among the messy in each of our lives requiring us to pray for it and look for it:  A refuge in a tile box.  A realization of love in miles of distance.  A handhold from me to give her courage to battle this disease. An appreciation for the small things when problems seem big.  An "I love you" when her pain subsides.  A gratitude of life in a betraying body.  A calming father's blessing despite a noisy hospital room.  A spontaneous air kiss even when I make her do hard things.  And ultimately, a faith in God in a world of heartache. 

Thoughtful Katy

Thoughtful.  That is one of the first things that comes to mind when I think of my sister, Katy.  As little girls, she would leave me neatly penned notes on my pillow and most recently, a surprise package with an assortment of fun sewing and baking notions.  They speak a thousand words of kindness and love.  I'm trying to follow her example.  Love you, Katy and happiest birthday to you!

Making the Desert Blossom as a Rose

Stairs turned abstract

Arabian morning sun on our sandy window

Gradation

With sleepy-eyed Clark on my hip I pulled the curtain back letting the arabian morning sun into our villa, flooding the stairs with its intense light.  Clark blinked his eyes repeating "bry, bry"--his word for bright--adding his staccato laugh in between. This is a recent ritual of mine, since I usually keep the drapes shut to reduce the heat.  There is something about morning light that does my soul good.  It is unlike any other light of the day and is fleeting making it that much more treasured.  There is no doubt much symbolism in the morning light breaking the night's darkness.  It starts my day on a hopeful foot.  

We've been here for almost a year now and to be honest, it's been tough.  We went through the honeymoon stage where the thrill of an unknown and exotic country and culture kept us riveted and distracted.  Mary Deane's hospital stay seemed to cut it short.  We still have the thrilling I-can't-believe-we-live-in-the-middle-east moments every now and then like when we dip steaming pita bread in muhammara or picking through bunches of herbs side by side a muslim woman in her abaya.  It seems surreal.  But, I miss family.  I miss lush green trees.  I miss the temple.  I miss my culture.  I miss Trader Joe's.  I miss being able to be outside for more than three minutes before I get heat stroke.  I miss graham crackers. I miss MD's CF team of doctors and nurses. I miss Target.  It's an odd list but I'm not afraid to own it.  It's good to miss things--it shows gratitude.

But I am determined not to dwell on what I am missing. I've set a goal for myself that has been cycling through my mind for some time.  I want to make this desert blossom as a rose.  Isaiah 35:1-2 "The wilderness and solitary place shall be glad for them; and the desert shall rejoice, and blossom as the rose.  It shall blossom abundantly, and rejoice even with joy and singing."  I want to forget myself and give of myself.  I'm not entirely sure how to do it but I know it begins with me and I start it each day by simply opening the curtains.