Friday, March 11, 2011

The pendulum swings

I started this post on Tuesday of this week and the title was "A lighter load".  In that post I had photos and descriptions of how our week was going and I was feeling so positive and at peace. As the week marched on and I didn't finish the post, I found myself feeling so weighed down, the post title changed to "A heavy weight" as we experienced fear, uncertainty, and reality of many details of our situation.  Now, today, I realize that this is our new life....for now.  Every day brings a new challenge and hard parts, but in the midst of that, we are being carried by love. The title I decided to use, reflects that part of this journey.  "The pendulum swings" describes a constant motion, ever changing, ever moving.  The pendulum can not stop, for it is an essential element in the workings of the clock.  There is a bigger plan happening around us while we hang on to the pendulum.  We feel positive and energized sometimes, and other times we want to curl up in our beds and have it all go away, but the One in charge is never changing and never leaves us.  We can be sure of that truth.

‎'Come to me, all of you who are tired from carrying heavy loads, and I will give you rest. Take my yoke and put it on you, and learn from me, because I am gentle and humble in spirit; and you will find rest. For the yoke I will give you is easy, and the load I will put on you is light.' (Matthew 11:28-30)



Emma had her hair cut on Monday morning by our sweet and generous friend, Sarah.  Emma LOVED it.  Here are the pictures of that day. 

She has a LOT of hair.  Everyone comments about how thick and beautiful it is.  She has always wanted to cut it and has cut it twice (once when she was 3 years old and wanted to be like "Mulan" from Disney who cuts her hair off with a machete).  She is not attached to her hair, like I have been.  
Almost 2 feet of hair.
So excited for this day
The cuts are harder to watch for me than her to expericence. 
Joy
Half way done
Happy with the results
Finishing touches
The happy girl
Finished results
 We then had a clinic appointment that afternoon and had a trying episode of accessing the port.  Picture two nurses and myself trying to console and hold still a fighting and scared 10 year old girl, while they clean and prep a sterile area to poke a needle into a still very swollen and sore port area.  We survived the "access" and then learned that her blood counts were indeed high enough to be able to attend a Sacramento Kings game that evening which our good friends, Kyle and Angie generously gave us tickets to.  We invited my brother Garrett and his girlfriend Erika and we all had a great time with the amazing seats only 8 rows back from the floor.
Emma and Erika's first time to a King's game
Getting closer to the floor
My girl
Excited and having fun
Uncle Garrett
Cotton candy quest
Since her blood work was very good, we have discussed and decided with her doctors that she can attend some school.  Tuesday and Wednesday "we" went back to school.  I say "we" since I worked there too as a classroom aide and the Physical Education teacher for the school.  It felt normal and back to our old life for those two days.  She got to be back with her 3rd and 4th grade combination class, back with her teacher, back on the playground, back working on her mission report, back at the lunch table and back to math homework.....(bummer).  I spent the time in my old office catching up on the piles of medical paperwork that has flooded our mailbox, sending emails, making appointments, etc. all while peering out my office window to the familiar playground that I spent every school day since September organizing classes and teaching great kids.  I almost could forget our reality.  It felt so good to be back.

Back at her team, "Stallion's Mane"

Thursday was different.  We had her scheduled clinic visit, port access, blood draw, chemo, anethesia, spinal tap and intrathecal chemo.  Our day started at the clinic at 10am and ended at 3pm.  The clinic was full of toddlers crying, families enduring, waiting parents, busy nurses, hurried doctors, screaming babies, and waiting and waiting and waiting.  The same kids cycle through the appointments so when I sign Emma's name in on the clipboard in the office, the names are all familiar.  We say hi to little Emma's mom as we have run into her every time we've been at the clinic.  We compare stories of how our Emma's are feeling and the procedures they are scheduled for during the day.  A sobering reality in our journey together.

Reality


The spinal tap went well, and Emma came out of anesthesia very happy and chatty.  They avoided a spinal headache this time by changing the needle used for her spinal tap and then "pushing" an entire bag of special IV fluids into her for an hour while she layed completely flat.  This increased her blood pressure which resulted in counter acting any negative pressure from leaking spinal fluid.  She did not suffer with any headache this time, so we were happy with that.  Feeling good.  Energized.  Hope-filled. 

We arrived home, exhausted from our day.  We had two care packages on our front porch meant to encourage and support.  It is such a beautiful expression of love and support to receive such packages. One of those packages was from a foundation that support families with children diagnosed with cancer.  The package was filled with a blanket for Emma, a sketch book for Ben and a DVD movie for Joseph. It also contained a check (what a blessing) and a folder full of information and pamphlets.......reality stings sometimes.  I didn't want to read this information.  I don't want to add to my brain the scary realities that are typed on the pamphlets.  I cringe at the words "childhood cancer", "prognosis", "patient".  I feel sad and burdened while I read a booklet called, "When your brother or sister has cancer" printed from the American Cancer Society, and it states that, "Every day in the United States, 46 children are diagnosed with cancer.  And every day, the brothers and sisters of these children are thrust into a world of experiences that will impact their lives forever."  I sink into feeling even more tired and more burdened.  We have two other children, that are included in this journey.  Two boys named Joseph and Ben that did not choose this journey, but are being swept along in it's churning waters.  I am sad, I am spent, I don't feel prepared to face the future and all that we have to do and experience as a family, and I feel weighted down. 
Recovering after spinal tap and chemo while lying completely flat
Strength beyond comprehension


We woke this morning and the sun was shining. The smell of spring grass growing and of plum blossoms emerging mixed with the smells of pancakes and bacon which starving and happy Emma woke up and made for her brothers. A feeling of hope slowly eeked back into my bones.  

Spring is one of my favorite seasons.  God knows I need the renewing reminder of His presence.  The rhythm of the seasons is a gentle reminder of the constancy and care of God.  The winter is coming to a close, the growth will happen.  The grass will fill in the scars of muddy ruts that were created over soaking driveways and pastures.  The gardens will return, the mowing and weeding will be needed.

The fact that with each handful of hair that is now filling our wastebaskets, there will be restoration.  With each poke of the needle, there will be strength.  With each meal brought, there is love.  With each mis-uttered word or lack of patience between my husband and I, there will be grace.  With each mistake, healing.  I am holding onto the pendulum.  I am finding that the rhythm of it's movement is comforting.  I know that with every hard and cold point, we will swing back into the warmth and peace.

Thank you Smith Family, for the handmade quilt


11 comments:

  1. Thanks so much for this transparent post. Your words continue to pierce my heart, dear friend. We love you and continue to lift Emma up as well as every member of your precious family. We also continue to carry you all before the throne of our King.
    Angela

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  2. My heart hurts for your family and I will continue to keep you all in my prayers. Thank you for sharing so honestly.

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  3. You're killing me, Rebecca.

    Beautiful.

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  4. Where did you come from, so filled with clarity and poignant words and skill and gifts beyond imagining?! From God. I am humbled by your grace and by Emma's. Enormous love, Mom

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  5. I am praying without ceasing for your family during this time...Know you are loved...
    -Rebekah Peoples

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  6. Rebecca, you do have such a way with words - so honest and heartbreaking, yet so powerful and hopeful. Our thoughts are with you, you who never expected this challenge but are dealing with it with so much grace.

    John and Lisa

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  7. Oh my gosh, Rebecca, God is using you thru this unimaginable experience, to witness to others. You have a gift (writing) and I know it is touching so many people. You are a source of inspiration- your faith in God will carry you through this for all to see!! Hang on to that pendulum!
    Marilyn Fasani

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  8. Every comment is right on with my thoughts as well. There is nothing else for me to add. You touch my heart every time you update. You truly have a gift and I thank you for sharing it with us.

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  9. Rebecca, thank you for sharing so honestly what your family is facing. You are blessing more people than you will ever know, just by being honest, and by showing your complete and utter trust in God. When you have no strength, you know He will be your strength. The Fasani Family continues to pray for yours.
    Monica Fasani

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  10. i'm with nate on this one.
    started out smiling, ended up sobbing.
    what a beautifully written post. what a painfully precious job you have been given.
    iloveyou
    cc

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