FOMO and parenting

Earlier this school year my kids came home complaining that they were the ONLY kids in their classrooms not allowed unfettered access to youtube videos.  From their perspective, EVERYONE but them has their own channel and watches all the funny viral videos.

First off - not so.  But that isn’t an effective argument for them for the same reason it wasn’t for me.  It’s about FOMO (fear of missing out), not about equality.  

So on to my second point - so what?  Lots of times there will be lots of people doing lots of things that you can’t.  I’m your mom and love you.  I will not helicopter parent you, but I also will not throw you in the deep in before you know how to swim.  

Turns out that is also not effective at treating FOMO.  

Once point 1 and 2 had been made, I moved to an action plan.  We love Jesus in this house and He tells us to be in the world and not of it (John 17:14-15).  The kids were citing a serious lack of “in the world-ness.”  Fair enough.  

I found a neat site run by Donald Miller called storylineblog.com.  On Saturday mornings a guy on his site loads up 3 or 4 of the best viral videos found during the week.  Lots of times they are silly, sometimes touching, occasionally quirky.  As they are largely on youtube I can log into an account I made and put all the videos in my cue for the kids to watch with me.  

It’s been a great solution here at the Smith house.  One morning I showed them a video about a cardboard arcade and they spent hours in the basement building games from boxes.  And they didn’t have the awful day where they were the ONLY one in the class who didn’t know what the fox says.  

Double win.    

Burning Bush (Euonymus alatus)

In Exodus 3 Moses, shepherding his sheep, comes upon a curious site – a bush that burns but is not consumed.  His curiosity draws him in, closer, closer.

God, seeing He has Moses’ attention, calls.

“Moses, Moses!”

“Here I am,” Moses responds.  

“Take off your shoes, Moses, you are standing on Holy Ground.”

And Moses, in the presence of holiness, hides.  He must have felt as Adam did.  Exposed.  Naked.  The futility of hiding is obvious but he is unable to resist the instinctive response.  

The call on his life was one from long ago.  A call he had abandoned when he murdered an egyptian, perhaps feeling the call was murdered as well.  He was a tainted failure.  Living proof that the position of leader was too big for him.

He had started anew, abandoned all else as something ruined by his sin.  His family, his occupation, his wanderings.  Nothing about him would point to his miraculous adoption into royalty, the mother who rocked him and whispered the secrets of Elohim while his parents surrounded themselves with idols.  Those were shadows behind the new life he lead in his father-in-laws house.  

Now this Elohim was calling him again.  The God of Abraham, Issac, and Jacob, the God of the living, had a plan for a nation and a plan for Moses. 

Who but God would whisper to a man who was broken? 

Is God whispering to this broken girl?  One who was once known for lies and deceit?  Am I one whom He would dare pour His gift of life and truth?  

I hear the whispers of God.  Sometimes calling me to new things.  Sometimes reminding me of who He is.  Often reminding me that His ground is Holy ground – that the seeds He has planted in my life will by His power be brought to harvest. 

Like Moses I am curious.  What are you doing, Lord?  How are you so bright and hot and intense – yet never destroying?  You declare yourself in my life and call me to things beyond what I can imagine.  Like Moses, I doubt His power can overcome my weaknesses.  I become myopic about my sins.  

Then I am in awe.  What a curious thing to feel God’s hand or to catch a glimpse of His love for His people.  His love for emancipation, willingness to work with even a silly girl like me to bring a bit of light into a dark world.  Like Moses I fall on my face.

Is God calling to you?  What is He whispering?  Will you let Him guide you into the plans He has for your family, your neighborhood, your nation?  Know that when He invites you into His plans you are standing on Holy Ground.  And when you are on Holy Ground, He will be faithful to complete what He’s started. 

He downright delights in it.  

Tis so sweet ...

Abbie was born with a congenitally small ear canal and a correlating 30-40db hearing loss.  We discovered this when she was 6 months old and her ear had grown to where her eardrum was no longer visible.  

I remember seeing a pediatrician (different from our normal one) and his surprise when the otoscope couldn’t find anything to see and then the tympanogram couldn’t find any sound to bounce off.  I carried Abbie down the hall, my face fresh with surprise.  Our regular pediatrician took one look at me and followed us into the exam room.  It would take a specialist to get to the bottom of her issue - but from that day we knew that things would be different.  

A unilateral hearing loss left Abbie with mono sound rather than stereo.  For instance, if a car was approaching on her left side (where her hearing loss is), she would hear it louder on her right and naturally assume the car was coming from her right.  Many times this was not as urgent an issue as an approaching car, but as she grew and became more socially active the need for amplification became apparent.  So at age 3 we found an ENT who allowed Abbie to receive a hearing-aid.  I made a short video of the process.  The look on her face when she was able to hear the full volumed sounds in her left ear is priceless.    

Until last year she has been functioning well with a hearing-aid (when she wore it!).  We have been thrilled with the Deaf and Hard of Hearing program in the District 196 school district and she hasn’t had any learning or speech delays.  Our ENT would periodically see Abbie and clean out her tiny ears and things were going fairly well.  

Last year she began having more pain associated with wax build up, and less tolerance for the increasingly painful in-office cleanings.  We decided to put her under anesthesia and get a thorough cleaning.  After several of these procedures we realized that this regimen was not sustainable.  Something needed to change.  

Our ENT suggested a canalplasty.  He would surgically enlarge her ear canal using a skin graft.  There was a small chance that her hearing would return, but the main focus was to alleviate the chronic cleanings and discomfort. 

We agreed and yesterday Abbie underwent a canalplasty on her left ear.  The surgeon was able to double the size of her ear canal using a skin graft, about the size of a nickel, taken from behind her ear.  There are small strips placed on the grafted incisions encouraging the healing while packing is stuffed inside the ear canal.  In two weeks she will undergo full anesthesia again to have the packing removed and special sponges inserted.  After another two weeks the sponges will be removed in office and her healing will be 2/3 of the way done.  

She did great through the operation and was brave through a day she would have rather not had.  In the past anesthesia has been difficult for her to emerge from with her experiencing outbursts and struggle.  Yesterday the anesthesiologist altered her meds (as well as Brian and I requesting many to pray for her) - and she was groggily able to participate in her recovery.  In fact, we’ve been saying to her “slow down!”  

Thank you for your prayers and love for our family.  I’m learning over and over that my kids are mine to teach and love on - but that God truly holds their future.  It’s hard to let go of that ownership (though it’s a mirage) but such a sweet thing to trust Jesus and to prove Him over and over.  

Oh for grace to trust Him more.  

- Rachel

An update and an opportunity!

Clara had her 21 month post treatment visit recently.  All her scans and tests looked great.  We continue to praise God for healing her and letting her bless our lives through her trials.  

Clara has a fun opportunity coming up ... tomorrow!  Kare11 is participating in a fund drive for Make A Wish, collecting airline miles.  At 6pm Clara will be on air for a live television interview sharing about her Make A Wish experience.  How fun!  We’d love for you all the tune in and pray that her sweet countenance shines through.  It is my hope that those who are in the middle of the tough journey that is cancer (or any life threatening illness, really) would find hope.  That they would see a kind, smiling face and know that the end of the road is not always death and destruction.  

And also that Make A Wish would get lots of donated miles.  :)

I will post her interview after it airs and I figure out how to get it out to you.   Thanks for your support and for loving on our family.  

Below is something I wrote upon our return from Clara's Make A Wish trip ... A summary of the whirlwind and wonderful time we had.  

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We have arrived back home after a whirlwind Make A Wish trip.  Clara’s wish was to see an ocean and a forest.  Her wish co-ordinator Carleen planned a beautiful trip to California to visit Monterey and its world-renowned aquarium and then to see the enormous redwood trees in the Sequoia National Forrest.  

Our journey started at 4am on Thursday when a limousine picked us up for our airport ride.  It’s safe to say that the kids were beside themselves and a bit giddy at the thrill.  A few flights and car ride later we were in Monterey by 2pm (CA time) and exploring the beaches.  

Up on a rocky ridge called lovers point we got a spectacular view of the bay opening to the pacific.  I asked Clara if the ocean was as big as she thought it would be.  

“No,” she said.  “It’s bigger.”

The next day we were up and at ‘em with breakfast with family and then off to a day at the aquarium.  We got there before it opened and stayed until after it closed.  Clara was in love.  

Our tour guide behind the scenes was a sweet, sweet lady named Thyra (pronounced tier-ah).  She showed us baby sea horses, the tops of the giant tanks, places for baby sea otters to be fostered back to health, the intricacies and secrets of jellyfish tanks, and all the best shows and presentations.  We were even allowed to touch a giant albatross (bird with with largest wingspan) and scratch his chin!  Clara was fascinated and has announced her desire to be an aquarist when she grows up. 

Make A Wish gave the kids a souvenir allowance and the kids had a blast picking out t-shirts and things at the Monterey Bay Aquarium gift shop.  Clara purchased her 6th stuffed dolphin and promptly named her Thyra.  

The next day we woke early and headed out whale watching!  We saw a humpback whale and her calf and a few curious sea lions looking for a free meal.  After whale watching we made the 4 hour drive to the Sequoia National Park.  California is amazing!  We went from 57 degrees out on the Pacific, 107 in the Fresno valley, to 87 up in the mountains.  The key to a California adventure?  Layers!

Another early morning sent us touring the park.  We saw the Giant Forest.  It’s truly giant: General Sherman, General Grant, and many redwoods knuckled into the ground along the way.  There is an amazing cave full of rivers and crystals.  To get to most things we drove and then took significant hikes up and down (2,000+ feet sometimes!) paths and stairs.  I was so glad that Make A Wish allowed us to wait until Clara is healthy so that she was able to really enjoy all that there was to see.  

One final thing we saw in the forest was Moro Rock. It’s about 400 steps up to a rock with a panoramic view of the Sierra’s and canyons.  Absolutely breathtaking.  

On our drive out of the park back to the bay Clara said “wow, mom.  We are surrounded by beautiful.” 

Our last morning was spent watching sea lions and sea otters and breathing in the sweet sea air.  As we said our goodbyes to the ocean Clara vowed to one day live in California, take her kids to the aquarium ALL THE TIME, and to work as an aquarist one day.  

We enjoyed our trip immensely.  Make a Wish is an incredible organization and the Monterey Bay Aquarium was terribly gracious.  We are so grateful for the opportunity Clara (and our family!) were given.  

As Stephen said, “Really great wish Clara.  Really great.”  

If you’d like to see some of our pictures from the trip we have them loaded on my dad’s Flikr page.  

There's a song for that

It may be slightly cruel, but Brian and I love to turn on music when the kids are all crabby and rising up against us.  In particular we turn on theme tunes that match the occasion.

For instance...

Just back from vacation and the kids have declared a pre-emptive chore strike?  

Back To Life by Soul II Soul  

Kids tired and turning on the angst full blast?

Come And Get Your Love by Leon Redbone

Did they run off in a huff and slam the door?

Stay by Maurice Williams

The fairness monster circling?

Ho Hey by the Lumineers

Sibling rivalry making you and the spouse wanna pull your hair out?

There's a Key by M. Ward

Are they taking themselves WAY too seriously?  For some reason this one seems to fit ...

Jai Ho (from Slumdog Millionaire)

The kids haven't figured out that we deliberately turn the songs on to match the mood.  Once they do I think we're in for  it.  I anticipate they may even double down and make their own playlists!

What soundtrack do you have for the cranky's?

the mind of man

After chemotherapy was completed the oncologists gave us a double sided, three page document detailing the recovery plan.  Each future appointment was noted with corresponding tests to evaluate her health at appropriate stages.  Sometimes there are scribbles and changes.  Sometimes we just follow the charted course.  

Today at Clara’s 18 month post-treatment check they pulled out her plan.  

“Let’s check your Road Map, Clara,” the nurse stated.

Clara looked at me with big eyes.  “I sure wouldn’t have put cancer on my Road Map, mom.”

Yeah.  Me either.  

Proverbs 16:9

The mind of man plans his way,

But the LORD directs his steps.

Today, Clara’s scans all looked great.  Her remaining kidney continues to grow to compensate for the missing one (isn’t the human body amazing?).  The X-rays remain spot free.  It was even a blessedly poke-free visit. 

As the kids say, Woot!

We will keep chugging away at the long term road map as the doctors tell us, but I keep my eye on the path in front of me knowing that the best steps are the ones He directs.  

Caring Bridge Farewell

Two years ago on December 4th I tried to write my very first CaringBridge post.  Sitting on the terribly uncomfortable grey bench/bed on the 8th floor at Children’s, I opened up a page and with fingers on the keyboard I stared.  How was this my new reality?  

When we initially walked the oncology hallway with Clara on a gurney, cancerous tumor leaking inside her, I thought that the other parents had peculiar expressions on their faces when they watched us enter.  How do I describe it?  Almost an envy mixed with pity.  

A few months later I understood.  They knew that our journey had only started.  We were still living with one foot in Healthy Child Land.  Clara still had all her hair.  She had not yet been ravaged by radiation and chemo.  She was still a normal little girl with baby fat, color in her cheeks, eyelashes.  

I felt anything but enviable. 

Recently a lovely singer, Jenn Alexander has written and recorded a song entitled “Clara’s Song.”  The verses talk about Roads, Rivers, Storms.  Places we are lead to that we must travel down - want to or not.  Clara shared her struggle with Jenn, saying “I don’t want to go.  I have to, but I don’t want to.”  

Two years ago I stood in the oncology ward and surveyed the path.  I didn’t like what I saw in front of us.  Signs on doors “no entry without mask,” kids walking attached to IV poles, teens with weary looks and puffy steroid faces, parents so remarkably numb.  

“This road, Lord?”  

Writing a journal update on CaringBridge seemed impossible.  I handed the computer to Brian.  “You write it.”  

It turns out that the road Clara walked was the road I walked.  The road Brian walked.  The road Stephen and Abbie walked.  The road all of Clara’s grandparents, her extended family, her friends, her church, her school ... 

YOU.  

In a way you have all walked this cancer road with Clara.  Maybe a piece of it was laden with rocks, or steep, or maybe you struggled as you watched.  Maybe you asked, as I did, “This road, Lord?”

As a people we are designed to be communities intertwined in wonderful ways.  I was often struck during Clara’s illness at the depth and breadth of impact a 6 year old could have.  I will always walk my children’s journey.  Sometimes I get to hold their hands, sometimes I will put my hands together and pray and watch.  But their journeys?  They are attached to mine.  

What sweet mercy that we don’t all have to physically have cancer to know the cancer road.   

This Christmas I wonder if any of you are walking down paths of pain that aren’t ones of your choosing?  Roads of intense pain and open wounds.  You don’t want to go but you have to.  

Not everyone gets a CaringBridge.  

Would you invite others in to walk alongside you in your journey?  We need each other.  You may well find that your path has twice as many blessings as curses - ours did.  Would you share?  

And if you aren’t riding the rapids yourself right now, please know that the way you opened your eyes a little wider, listened a little longer, unfolded your arms to us was an enormous blessing, and perhaps one that you are called to provide again to someone in your midst.  Sometimes it’s the attentive ears and compassionate smile that allows a friend to exhale.  Know that their journey will be a part of your journey, like it or not.  Sometimes the mess is in our lives for a reason.  Let it be there, and let it be messy.

As we look back at the road through the valley of cancer, I have decided to stop writing Caring Bridge updates.  Because Clara is well!  She is healed!  Her cheeks are rosy, hair thick and full, no orthodics, no side effects.  For all of us it’s time to embrace health.

I will continue to write on my blog and occasionally post updates on Clara’s oncology visits as she will have those until she is 18.  If you’d like to hear Jenn Alexander’s album, you can pre-order it here, or download it on itunes on December 10th.  She’s a delight and all around fantastic.  The amazing melody she has put to the thoughts Clara expressed ... it’s something to behold.  

Is it possible to thank each of you enough?  I don’t feel like it.  You have walked this road with us gracefully, crying with us, picking up after us, praying and pleading through long nights for us.  Our hearts will never fully express our gratitude towards you.  

Clara has been mis-singing the lyrics of Silent Night lately.  She sings, “holy infinite, tender and mild.”  Interesting, no?  God the infinite, is tender and mild.  Two thoughts I hadn’t connected until her little voice sang it across the house.  

The infinite God who knows the infinite value in rocky paths is tender and mild enough to walk each step with us - especially when we don’t want to go.