Crazy Update

We are doing well!  It's been a season of traveling that we never would have expected but are very thankful for.  In September Brian and I, joined by his sister and bro-in-law, parent's and grandparent's, cruised majestic Alaska!  Unforgettable!  Dream come true!  Saw the glaciers, bald eagles, a brown bear swimming, White Pass Railroad, world's best yodeler, mountains, trees, water and clouds like never before even in our beautiful Pacific Northwest!

Glacier Bay, Alaska

Then, in October we celebrated our 10th wedding anniversary, beachside in Maui!  I told Brian, just send for our kids and I'd stay forever in Hana! A-MAZING!!!  It was like the garden of Eden.  We snorkeled, surfed, kayaked, zip-lined, swam with turtles and under waterfalls, luau-ed, and slept thru the night 10 nights in a row-MIRACULOUS! 

North Shore, Maui

And I just returned from a whirlwind tour of New York City with 16 crazy ladies (Brian's mom, sister, aunt's and cousins).  A dream trip for Auntie V's 60th birthday, I was much obliged to join in the celebration!  We saw the Statue of Liberty, Wicked and Annie on Broadway, 9/11 memorial, Brooklyn Tabernacle, Times Square, Radio City Music Hall, Central Park in the snow...  I have officially eaten my way through Alaska, Maui and New York.  Food will never be the same!

Radio City Music Hall (Rockette stage), New York

The kids are doing great, wondering when they get to travel the world!  I'm shocked and grateful to be 24 weeks through school, still loving Sonlight.  Lukas has become a little bookworm and I never cease to be amazed by Haylee's creativity and Hannah's nurturing devotion to Jaron.  I LOVE my kids!  Hannah just finished her first experience with Ballet.  I think this will be a well-suited passion for our little Princess Pea.  Haylee and Lukas are in their second season of Kid's Choir.  Lukas has one of the main speaking parts for the Spring Program and is a natural performer.  Haylee has a solo that is so sweet, and she is so excited!  She definitely comes from a family of singers, on both sides.   

They each picked a theme for their bedrooms and we've been working hard to make each of their spaces unique and special for them. Lukas chose eagles (like his Great Grandpa Albaugh) and sports.  Brian is working on an eagle's nest bed.  You can't even imagine...  I'll have to take pictures when it's all done!  Haylee chose a beach theme and has lots of our Hawaii pictures framed on her walls and seashells on white shelves.  Hannah is obsessed with flowers and she has an overwhelming amount of floral decor in her bright purple bedroom.

Jaron is having a rush of appointments again and transitioning into 3-5 year old Early Childhood Special Education.  I believe the plan will be to homeschool him this year and we'll see about next year.  At this point, with his brother and sisters at home, it is wisest to keep him away from exposure to sick toddlers and keep him entertained by the play, toys, music and action at home.  I cannot believe his 3rd birthday is only 7 days away!!!  Our little man is such a huge source of joy and I just can't imagine life without him!  It's still like having a 3 month old baby in the house.  On good days, he coos and smiles and occasionally sleeps through the night.  Arching and stiffness have been his position of choice and after trying so many things, a Shriner's doctor told me it's probably acid reflux.  So simple, yet more Prilosec has made a much more relaxed and bendable boy.   His seizures were out of control 2 weeks ago, but after just 2 doses of Ativan, that made him sleep, he is very alert and happy (see video)!  

Glad I could catch up, hopefully it won't take 9 months next time!

A New Creation

Trying something new!  As in, we don't think anyone has made anything like it!  Thanks to the creative minds of our awesome Physical Therapist, Stephanie, and Adam, an Orthotist at A Step Forward.   I'm so excited about this and it hasn't even been made yet, but it is in the making!  Stephanie got in touch with Adam and explained the difficulty we were having with getting Jaron access to his augmentative communication tools.  

We just received the equipment funded by the Wheels to Walk Foundation including, jelly bean switches, a mounting arm for button positioning, and a computer switch interface.  Basically, this means Jaron can play games on the computer that are created to be used with a button instead of the computer's mouse.  Crazy!  

The obstacle for Stephanie and Adam to overcome was to give Jaron the support he needed to sit up with complete support for his back and neck but also the ability to move his head.   Stephanie gave very specific requests and Adam thought for days and dreamed up an original head/neck/torso brace.  When we all got together at one of his phyisical therapy sessions, Adam whipped out this long white foam pad and two velcro strips.  He measured, cut little armpit spaces and strapped it around Jaron's waist. 

Stephanie and Jaron trying out the foam
pad and velcro brace that Adam made. 

He seemed to relax when he had
good torso support. Now we just
need to work on that neck control!

 It was amazing what a difference that support around his waist gave.  He was immediately more calm, not trying to arch, and allowing Steph to transition him from sitting, to laying and side-lying positions!  Brian and I were excited about the idea of being able to hold Jaron with just the torso portion of the brace!  Adam started brainstorming ideas about how he would separate the head/neck portion from the body portion.  He mentioned some kind of flex-joint he can put in the neck to make it moveable and some disconnect-able parts for the head brace.  This is all new ideas and we just can't wait to see what Adam will create!

Brian used some floor pad that goes
under wood flooring to make a little
brace to try out at home.

Today was casting day!  Thanks Abby for keeping the big kids, this was quite an involved process!  First, they pulled on a little tube-like garment with arm and face holes.  He looked like a Teletubbie!  Then, they wrapped the top of his head, down his neck, and around his belly with plaster of Paris.  He wasn't happy but he didn't scream too loud.  The water was warm and by the time it was hardening up, he felt well-supported and he just looked around the room.  I wish I had a picture of this step of the process, but we were using my whole body and 6 other hands to support and wrap him and then hold him still. 

"I am not thrilled about this."

 And this is the cast!  Looks pretty crazy but I am obviously very hopeful that it will make a great impact on the possibilities for Jaron's support and communication!

Jaron's brace will wrap around his whole mid-section from under his armpits to the bend of his hips, leaving a little hole for his g-tube.  The support up the back of his neck and onto his head is the part that Adam is designing brand new!  This support will allow him to play with his switches as they are mounted right next to his temples.  He uses a very slight movement of his head to activate a jelly bean button to turn on a toy.  Without any muscle tone in his neck, it is very floppy and therefore difficult to support.  The switch toys are not only for playing but they will be his window into communication.  Our goal is to find Jaron's "voice."  And I can't wait to see what he will be capable of communicating through this extraordinary invention!

***And just as a side note to my family and old friends:  This definitely takes me back to my childhood, wearing a back brace for scoliosis!  Four, long years, 13-16 years old, sheesh.  They actually had 2 braces up on a shelf in the casting room that looked exactly like my brace.  Jaron's brace, Adam assures me, will be much more pliable and comfortable!***

Haylee trying on my back brace. I think this
is the only picture I have of that dreadful thing!

New EYES

Psalm 89:1 I will sing of the LORD's great love forever; with my mouth I will make your faithfulness known through all generations.

Two years ago, when Jaron was only 2 months old, I wrote this post.  I decided to take on the challenge of writing down one thousand gifts from God.  I could focus on the tragedy of what I felt my life had become or open my eyes fresh to what God had given me!  I can't even begin to explain what a transformation and peace this process has brought me! Naming the beauty that God shows me every day is simply miraculous! I don't have to travel great distances or do great things.  My life doesn't have to be put together, stable or even happy.  My circumstances can be scary, depressing, overwhelming or downright horrific.  I just have to look around me and see...

Photo by Staci Friant

God is good and He is the Father of Lights giving us only good gifts, and I have received.  Not just in a passing, "yeah, sure, whatever" kind of way.  But rather, in a STOP.  SEE.  BE AMAZED.  And then, WRITE IT DOWN, way.

Photo by Staci Friant

Just the other day, I reached my goal of writing down 1000 gifts!  My perspective has changed and I never want to stop naming the gifts!  As I was finishing my list this week, I started reading the book again.  I've recommended it to friends, bought it for birthday presents, lent my copy to sisters...  It changed my life and I want to pay it forward!

One Thousand Gifts by Ann Voskamp

I'm a "journaler" for life.  I have sweet childhood journals, silly teenage journals, traveling journals, wisdom for being a mama journals, journals to my kids, prayer journals, sermon note journals... And this most recent one is only the beginning, but I will cherish it and return to it often because sometimes I forget what God has done in my life.  I get discouraged.  I struggle to see the sunlight through the dark clouds.  I lose my temper.  I lose my hope.  The winter is long.  The bare trees expose the barrenness I feel deep in my bones.  I feel lifeless, unproductive, unfruitful...  Not because any of these things are true of me.  I just lose sight for awhile.  I need new eyes to see.  Naming the gifts has given me new LIFE!  

Sometimes I had to add some special pages to fit all 1000!

But usually it looks just like this.

"Life change comes when we receive life with thanks and ask for nothing to change." Ann Voskamp

"Something always comes to fill the empty spaces and this is what I've come to do with the white space. I invite thanks." Ann Voskamp

A few of my gifts:
6. Feeling peace when my world is falling apart.
17. My leadership team at CBS. They have carried me in prayer to the very throne room of Jesus.
25. Finally opening the windows again after the cold winter.
33. Hand-me-down clothes from friends for my kids.
37. Haylee fills our home with constant singing.
40. God's timing. Though He won't reveal His purpose, I know His timing is perfect. Psalm 33:11
49. Clean clothes.
64. Family and friends who show up to help when the ambulance pulls up to our house.
108. 3 months with Jaron Matthew. He is so precious.
133.  God alone is God.  Not the doctors.
255. Blue sky, white clouds and green leaves.
318. Pain and sorrow that makes healing and joy so precious.
328. Taking my thoughts captive to obey Christ and realizing it's not easy. 
358. Courage to keep hoping when all seems lost.
415. Thankful children.
422. TRUTH, even when it's hard and uncomfortable and I'm afraid.
473. The moon. Wow!
534. A date night with my little girls.
787. Reading to all 4 kids OUTSIDE! Beautiful day!
827. Lukas working hard with his Daddy.
907. A cup of coffee, a book and a lap full of my kids.
959. Always going on an "adventure" with Brian and the kids. Learning it's ok to not know what's next....

So, go get your own spiral bound notebook to lay open on the counter or tuck in your purse.  Buy the book because it is so inspiring.  Begin writing down the beautiful, amazing, difficult gifts that God has given you.  Your life will be changed.  Not necessarily your circumstances, but certainly your perspective.

One Thousand Gifts, I dare you...

Lord Help Me

He has pooped. 

It's a mess.

He hates to be cleaned up. 

He screams. 

I scramble. 

He's arching. 

Not breathing. 

Eyes wild. 

”Oh God” 

Blue face. 

Not again. 

Lord help him. 

Please stop this. 

”Breathe baby”  

I give him a breath or two. 

Did that even work? 

His teeth are clenched. 

His body stiff. 

Stuck. 

Blue... 

. . . . . .

Finally, a faint gasp. 

I breathe deep. 

He lays silent and so still. 

I rub his chest and assure him, he's gonna be ok. 

Slowly color returns to his stone still face. 

From screaming panic to an eerie calm. 

He is spent. 

So am I. 

Lord help us.

So tired after his horrible seizure

Please pray for Jaron to stop having seizures.  And for my heart that stops every time I watch my baby suffer so violently.  We need wisdom and peace from the Lord.  He has guided us through so many unknowns and I know He will continue to show us the way.  We have been loving that Jaron is more alert and sometimes even gives a smile!  He is not on any seizure medicines right now besides the ketogenic diet.  The decision remains in our hands whether we try another medicine.  I hate the side-effects that such potent anti-seizure meds cause but if there is any hope of better seizure control, of course we desire that.  Wisdom, we need wisdom.

This one's for my little Sisters

You are BEAUTIFUL. 

  You are brave.

               You are loving.

                          You are kind. 

                                            You are creative.

All that God has created each one of you to be, is BEAUTY!  I thank God for you!  I am grateful beyond words, for the way God miraculously placed you in my life.

Why me?

Why you?

I'm really speechless.  You have grown into amazing young women.  I remember sitting at the bottom of your bed for countless bed times and singing until you all three fell asleep.  One with a thumb in her mouth, another with her favorite white blanket, and the littlest with pretty red hair splashed across her pillow.  You are beautiful because Jesus is in you and you have gone through so much, yet you still love. You still embrace. You still work hard.  You still laugh.  You still brush all those horses.  You still snap all those photographs.  You sing and you dance.  Each is so unique in your beauty.  Your brown hair, your blonde hair and of course your red.  And all those gorgeous blue eyes that I adore!

God is doing a work in your lives, my dear sisters.  This road to holiness is painful, yet it is worth every difficult step.  Like a caterpillar who must struggle out of its tight chrysalis in order to use the new, wet wings and soar.  The fight to free itself from the covering gives it the strength to take flight.  You too are being refined by God's fire.

He is molding you and shaping you in the dark, hard places of your life. When we hurt most, we need Him most.  That's where He wants us.  Fully dependent on Him because we've tried every possible way on our own and the only thing left is to surrender to Jesus.

Don't lose hope.  Don't lose that light in your eyes.  Don't give up on love.  Seek the truth in all things.  Read God's Word because it is precious and you will find LIFE.  Forgive, forgive, forgive.  Keep dancing.  Please keep on dancing in your own beautifully unique ways.

You are BEAUTIFUL!

Every boy needs Superman pajamas

Jaron got Superman jammies for Christmas from my family, complete with a little red cape!  I remember when my little brother, Josh, had his Superman jammies!  He wore those things thin.

I LOVE to see my littlest man in his!  It's a bittersweet feeling though.  I really wish he could just sit up, hop off my lap and go running down the long hallway, cape floating along behind him.  I'm sure he would squeal with delight at chasing his big brother!  Lately I've felt sad that the kids can't play with Jaron like they can play with their little cousins.  They can show him toys, kiss his hands, and cuddle on the couch but they can't roll around on the floor, chase him around the house, tickle and giggle, talk about things, teach new words, practice somersaults, hide in the lion cave (our little play space under the stairs) with a flashlight...  All the fun things they get to do with their 1-3 year old cousins.  I guess it's just another thing I need to spend some time mourning and then move on.  I'm learning.  No need to feel sorry for me.  There are plenty of things I can be thankful for that typical 1-3 year olds don't do and Jaron does.  Who else gets to snuggle in the chair for hours with their adorable Superman?!  Don't be jealous!

Ultimately, I am looking forward, with more anticipation than I can express, to the day I see my littlest boy in heaven!  Wow, what a reunion that will be!  And maybe, just maybe he will get to wear his Superman jammies and come running, cape floating along behind, right for his Mommy!

Wishing. Hoping. Thinking. Praying.

You know when you pray for  something for a long time and you just really have a peace that it's all gonna work out, even if you're not sure how?  Or when you're hoping for something so specific that it almost seems silly to think you might get it?  Well, our van is one of those things.

I called it my birthday present because even though we need it for Jaron, we got it now because of me.  And Brian is putting in a lion's share of hard work to get it all ready for me to love and use!  I have a bad back and since our chiropractor showed Brian the x-ray of the 47 degree curvature of my spine, I think he's working overtime to make this happen right.  Technically, Jaron could probably stay in a rear-facing car-seat for at least another year.  But it is really hard to transport him into and out of the car-seat, his wheelchair, and back in the house.  I've avoided several outings just because I dreaded the chore of it.

Imagine carrying a 22 pound newborn (he has low muscle tone so he has zero neck control/strength) who is really strong (don't worry, I still can't quite comprehend how one can have low muscle tone and yet strong muscles, but if you hold my boy, you know) and gets stiff and arches his whole body when you carry him out into the cold.  And then when you try to tuck all 32 inches of his limp yet very stiff body into a seated position, he stretches and twists and cries all the more.  Not to mention carting along his bag of formula that he is attached to by a long tube (which I've completely yanked out of his stomach wall, while trying to transfer him from car-seat to stroller one morning.  Milk everywhere!).  Getting him buckled up is sometimes a 5 minute battle, and then he's in... but I have to take him out, put him in his wheelchair, fasten the harness, load all his equipment and then come back and do it all again.  It's exhausting for me and makes him very agitated, so I try to avoid the process all together!  I'd rather people just come visit us at home!

So, Brian has been searching the internet for a few months for a vehicle that is wheelchair accessible or can be modified.  We have to fit our other 3 kids who are all still in booster seats, as well as having a lift or ramp, and a way to strap down Jaron's wheelchair.  It is a very difficult vehicle to find.  Brian started this hunting process by applying for a car loan.  That was unsuccessful, so we had to really adjust our expectations and believed we would have to settle for something less than ideal.  There were a few really old, really big, really ugly wheelchair vans to choose from.  We decided to just wait.

Ok, rewind to about 11 years ago.  Over the summer that Brian and I met, I was nannying for a local caterer in NE Portland.  She had a beautiful, blonde, 10 month old baby girl and a bright red VW Eurovan!  For some reason, I thought that was coolest car a caterer could own.  It was just cool!

So when Bri and I started talking about the possibility of needing a wheelchair accessible vehicle, the first picture in my head was that bright red VW Eurovan!  It would be perfect AND cool!  We looked at everything!  We considered driving to Minnesota for a red Dodge Sprinter.  It was too tall to fit in our garage and it would have required a hefty loan... Or an old Ford van with carpeted interior...  Or there was the white and blue bus/van that had the front passenger seat removed and steps put in like a bus.  It had lots of extra rows of seating though, I guess I could've sat behind Brian...  But when a loan wasn't available we even gave up on that.

Brian's grandparents had left a trust fund for children with special needs, so we were given a generous check and it was decided to be used for an accessible vehicle.  We were so thankful for the funds to put towards our van!  The search continued...

In a casual conversation between my sister and uncle at a family Christmas gathering, we found out that a cousin had a van with a lift that she was trying to sell.  It felt too good to be true!  We had no idea what it was or how much she would be asking for.  Two weeks later, on Christmas Eve, Kori called us and said she had a RED VW EUROVAN!  WHAT?!  Not only that, it had a newer engine, new wheels and tires and a fully automated Braun Lift!  WHAT?!  And then Kori said, "The van was purchased by donated money, so we want to donate it to you."  I still can't even believe it...

Brian and his dad drove to pick it up two weeks later.  Happy Birthday to ME!  It is a 1993 so it needed a little TLC.  Fixing up the van has been a family labor of love!  Brian, his brother-in-law Jeremy, his dad and my little brother Ben, worked all day to wax, buff, paint, vacuum, scrub, repair every inch of our sweet van.  We've had it one week and already Brian has installed a new battery, air filter, oil filter, spark plugs and wires, fuel filter, catalytic converter, muffler, tinted the windows, changed the oil, painted the bumpers and the VW sign and rotated the tires.  It SHINES!  He's not done.  We have scheduled an appointment to get all the straps installed so that we can safely tie down his wheelchair to the van.  Today, Hannah helped Brian install speakers in the van since they are all blown.  This is simply a miracle!  We didn't have to spend any money to purchase the van so we have a budget to fix it up!  It looks beautiful!  How silly of me to wish for something so specific, huh?!

"Thanks for my new wheels, Daddy!"

Jaron's maiden voyage.  On our way to church.  

We strapped him into his wheelchair in our cozy living room and didn't have to take him out or unload any equipment till we were back at home again, AMAZING!

And everybody fits with plenty of space!