Wild Adventures

Brian and the kids are off on a crazy adventure.  They went to bed at 8:30 like normal.  Then, Brian got them all up at 9 and whisked them off to a movie!

They were SO EXCITED!!!

Jaron and I get to stay in the quiet house!

I'm SO EXCITED!!!

I've sung about 20 songs to my boy and he is Mr. Chatty and Smiley tonight!  Anyone who has had the gift of "chatting" with Jaron knows that it is like pure gold!  A few have even been moved to tears because it is just so precious, sacred even.  Obviously it is rare and not to be taken for granted.  We ended on our favorite song, one my Grammy made up for her only son 40 years ago.

Jesus loves you my little son.  You're a very special one.
The Lord gave you to us one fine day, in a very miraculous way.
Now its time to go to sleep, in your slumber He will keep.
Jesus loves you my little son. You're a very special one.

I wasn't supposed to have 365 days to rock my little one to sleep but I have had several hundred instead!  Three years of rocking almost every night makes me one spoiled mama!




I have been on a wild adventure of my own that I'd like to try to explain a bit.  God is showing me new ways to be a Mom.  He's actually showing me a new Him.  It's quite clear that I love my children and they are growing a reputation for being very helpful and kind.  Character qualities that a special little brother can uniquely teach you to build.  My desire for them has always been to capture their hearts, to teach them to love Jesus, to love others, and to love learning.  They love Jesus with passion, they are teaching and stretching Brian and my faith daily!  But there was something missing and I'm on a mission to find it.

It's easy to say that all kids argue, disobey, ignore, disrespect their parent's and siblings.  But I'm convinced there is another way.  I don't claim that I can conquer these bad relational habits in my own strength, either in myself or my children.

BUT GOD CAN!

The Lord has led me, on several occasions, to Lifestyle of Learning.  I am waist deep in studying and pouring through all the rich encouragement and teaching that they offer.  I AM LEARNING and this is where teaching my children begins!  I must allow God to parent me so that I can confidently parent my children.  I want to be able to say with a clear conscience, like Paul,

"Whatever you have learned or received or heard from me, or seen in me-put it into practice." Philippians 4:9  

Because they will.

The good.

The bad.

They will DO what they learn, hear, or see in ME.  Wow, that's a heavy responsibility God puts on parent's.  But He backs that up with a promise to sustain us and teach us His ways,

"Come to Me, all you who are weary and burdened, and I will give you rest.  Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light."  Matthew 11:28-30

So, I'm learning.  I have a lot of listening and obeying to do.

Homeschooling gives me a unique opportunity to speak truth and love into my children all day long.  Or, I can stack text books and agendas and expectations in front of them and have only a harsh, negative impact on them all. day. long.

It feels like I'm strapping on a parachute and getting ready to jump into the wildest ride of my life!  Lord, please mold me, shape me, and above all, show me your great love!

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!