A New Year

The verse that I believe we are meant to meditate on this year, Philippians 4:8-9.

"Finally, brothers and sisters, whatever is True, whatever is Noble, 

whatever is Right, whatever is Pure, whatever is Lovely, 

whatever is Admirable—if anything is Excellent or Praiseworthy—

think about such things. 

⁹Whatever you have learned or received or heard from me, 

or seen in me—put it into practice. 

And the God of peace will be with you."

I believe God is calling our family to really analyze the things we fill our time with and measure them by this standard.  To ask ourselves if what we are doing passes the Philippians 4:8 test.  Not to live by a law, but rather to really feel peace in our lives.  

It's the verse I have been praying to the kids when they have a bad dream.  Kids are so sensitive to everything they hear, see, and do.  One scary moment in a movie and we are dealing with an hour of tears at bedtime or in the middle of the night.  So many times Brian and I have felt like we just don't know what to do.  I really think 5 is a very formative year for the imagination of a child.  Lukas and now Haylee both have gone through a period of bad dreams.  Not because of some horrendous exposure to horrible things.  I remember when Lukas dreamt about lions every night and so I boxed up Lion King, Madagascar, and The Wild.  There was no other explanation for this intense fear of lions.  We would pray, read verses, memorize scripture....  That year Lukas memorized Psalm 23 and then Psalm 1.  I need to work on that with Haylee now too.  She is very careful to ask if a movie is "pretty" now, because I have explained to her that she needs to be careful that what she watches is Lovely, Pure, True...  So that her mind is filled with those things.  

Sometimes even a good thing is not the most Praiseworthy thing.  Keeping the dishes clean and the clothes washed are good things.  Even those simple chores prove to be too much in our home some days!  I'm sure one day when I'm looking back on these days, I will not regret the dirty dishes I left in the sink.  But if I don't play, sing, rock, talk, dance, explore, listen, create, color with my children, then I will deeply mourn the missed opportunities.  Jaron has helped me realize how precious each moment is.  I still have him to hold tonight, on my 31st birthday, but there is no guarantee he will still be in my arms on my 32nd.  

My desire for the new year is to look for the Beauty in all things.  To stay focused on the Truth.  To seek out the Lovely.  To stay Pure in mind and action.  To count the Gifts God gives.  Make it a goal in our reading, watching, housekeeping, parenting, marriage, hobbies, music, and entertainment to think about and meditate on that which is Excellent.  To shape each of our hearts in purposeful ways.  To surround ourselves with Noble, Pure, True things, so that nobility, purity and honesty flow naturally from us.

I have printed out and framed our family's verse in both of the kid's rooms and in the living room.  We also made an Armor of God poster because praying continuously is part of doing what is Lovely and True.  And it's proven to be our greatest weapon against those night terrors.

Also, as Paul says in verse 9, I want my children to be able to DO "whatever they have learned or received or heard from me, or seen in me."  I want to be a good example for them to follow.  And ultimately I know the God of peace will be with me.  And that's a promise I want to live in.  I know that my year will not be easy, but I know the God of peace will be right here with me!

My prayer is that God would help me to make this a reality in my home, not just a plaque on my wall.

Our little bathroom redecorating

Just a fun change we did over the summer!  I started by making curtains in the living room and found a material that went with the curtains that were the same colors but totally different style and went a little crazy in the bathroom!  It's a tiny bathroom so it works :)

Before

After

Wow, it's been 2 months since my last blog?!

 We have been a busy bunch...  

4 new haircuts

I ran my 3rd Half Marathon
Eugene Women's

Ashley and Josh

My brother, his wife (my college roommate), and their 2 daughters moved into our neighborhood!

Jocelyn and Abby

School started for 3! 

I thought I'd just get serious about Haylee (5 1/2) this year because she is Kindergarten age now and let Hannah (4 1/2) play for one more year.  But we got her a Preschool workbook and she went through all 200 pages in 6 weeks!  She was completing 10-15 pages a day and loving it!  So we decided to order the Kindergarten Math and Phonics workbooks for Hannah like Haylee.  Hannah is quickly trying to catch up.  They are only 13 months apart, so we'll see how they land over the years academically, but no pressure either way.  That's one of the beauties of homeschooling, you don't have to be governed by grade levels.  You have the freedom to move ahead or slow down depending on each child's progress.  

Lukas made a great Mario! 

Lukas (7) is really taking off with reading, but I still do a lot of reading aloud to him for the chapter books.  I was really nervous about homeschool this year because I was unsure how it was going to work for a newish reader doing 2nd grade, and teaching one or both of the girls to start reading.  I'm still amazed a mom without a college degree can teach her own child to read!  What an incredible concept!  It's such a rewarding task!  But 2 in one year?  EEK!

It's crazy to sit down with all 3 at the table and have all 3 asking, at the same time, "What do I do on this page?"  Aaaa!
I have begun a few new habits to help me stay calm and keep everyone focused.

1) We light a yummy candle in the middle of the table 

(deep breath) 

2) I play Classical music on Pandora Radio 

(Just discovered Pandora this month and I LOVE it!)

3) I always bring my coffee!  

And 4) We slide Jaron's chair right up to the table, so he can be a part of the school day (or take a nap).  

It also helps that Autumn is my favorite season!  The AMAZING color of leaves on the trees out the dining room window (our homeschool room) fills my soul with thanksgiving!

I LOVE this big tree in front of our house in the Fall!

This is an old Fall picture of the girls.
It makes me smile!

Oh, and Jaron is SMILING!!!  And that makes my soul sing every time!

Speaking of Jaron, he got new wheels, a Kid Kart Xpress!  (pics later) He is 19 months old and has grown an inch longer (30") and a pound heavier (21' 9").  He is almost weaned off of both seizure medicines (Keppra and Topomax), and will soon be only on the ketogenic diet and supplements for seizure control.  He had a 2 week period of NO SEIZURES!  He started smiling, cooing, and responding in his own special way!  And I would say his seizures are "controlled" for now.  He has multiple little "startle spasms" through the day (I coined the term because that's exactly what they look like).  But they are not disruptive and he often smiles right after he does it.  We have now added a Speech Pathologist to his list of specialists, who is excited to be teaching him to use switch toys!  Basically, it is an electronic toy attached to a cord with an "easy" button on the end.  They place the button about a finger-width from his head or hand or foot and teach him to push the button to activate the toy!  I'm shocked that he is able to make the cause-and-effect connection!  The fact that a year ago, I was trying to prepare my heart for losing my precious baby boy (If you're wondering... No, it's not possible to prepare for), and today I'm telling him, "Push the button, play your music!" is a miracle!

More later...

My Last Visit With Grandpa

I wasn't lucky enough to call him Grandpa my whole life, but as soon as I met him I loved him and he was my Grandpa for life.  He was Grandpa to me before I even married into the family, 10 summers ago.  

His only son, my father-in-law, Lee, said he was a lover not a warrior.  An Aphrodite of sorts.  It's true.  Grandpa served faithfully in World War 2, but he was a clerk at a headquarter, not a combat soldier.  And the highlight of those war days was the story of returning home to marry the love of his life, Betty Grace!

The Christmas after our wedding in 2002, Grandpa and Grandma gave everyone a green, hard-back, NIV, One Year Bible.  I finally read through the Bible in 2009 and now I'm on a 2-year track through it again.  They wrote a sweet message on the inside cover and ended it like this,

  We pray God will bless your home as you grow together as a family of your own.  A family growing after God's own heart and the WORD of God, whatever and wherever God leads you.  

Grandma and Grandpa Albaugh 

Psalm 119:9-16

"... I treasure Your WORD in my heart..."

On August 26, 2011, I sat by Grandpa's bedside and read him those treasured WORDS.  Lee had gone home to shower and have dinner with Cheryl.  He had kept a constant vigil by his dad's side the last few days.  Aunt Vanessa, after watering Grandma's Garden, and starting a load of Grandpa's laundry, went to dinner with her family and promised to return soon.  I sat down in the chair next to Grandpa with my Bible, a journal, and my phone (I didn't know all the verses of hymns I wanted to sing with him).  

He had spent the whole day before, saying goodbye to his grand children, great grand children and a few life-long friends.  And of course, he had his last bowl of ice cream!  He literally fought for every breath.  Yet he uttered many, "I love you's" and last encouraging words. A smile. An eye brow raise. A hand squeeze.  He truly was a lover!

So, from 5:30 till 7 p.m. Friday night, I sang, I read, and I prayed.  We delighted in the WORD of God!  It was like sharing a very familiar story.  God's WORD was more powerful that evening than I've ever experienced!  Every WORD came alive and it brought unexplainable comfort!  It was really hard to listen to his lungs struggle to take each breath as they were filling with fluid.  But filling the air with word and song, ushered in peace as the Presence of the Lord was in that place! 

And then, one by one, others arrived.  First Vanessa who folded the clean laundry as I sang.  Then Lee and Uncle Rich, and finally Uncle Dave and Cheryl.  We rearranged Grandpa in his bed but he was more comfortable back on his right side.  We wiped his head, face, chest and arms with a cool, wet cloth.  Got him tucked in for the night.  

Instead of turning on one of his favorite Gaither DVD's, we agreed to sing him his last songs, this side of heaven!  "I'll Fly Away," "I've Got a Mansion," and Lee even sang him a song about "Rollin'" that he had sung on the ships returning from the war.  Then Lee pulled out the belt he had made for Grandpa and retold his life story from the pictures he etched into the leather strap.  

And finally, we said goodnight.  We each hugged him, and kissed him and said one last, "I love you" for everyone.  Vanessa whispered to her Daddy that it was OK to go now.  Lee turned off the light and closed the door.  About an hour later, he met his Master at the Throne of Grace!!!

Today, I have been struck by this thought:  Grandpa was just here with the kids and I on Tuesday, enjoying a ham and cheese sandwich, sliced apples, harvest cheddar Sun Chips, and a cup of vanilla/chocolate swirl ice cream!  And now, he is touching the robe of the Holy of holies! I'm in awe!!!

Psalm 17:15 

As for me, 

I shall behold Your face in righteousness; 

when I awake I shall be satisfied, 

beholding Your likeness!

The Albaugh Men, April 2010

See you on Heaven's shore, Grandpa!

My Daddy

 All Geared Up

Dad, Josh, me, Melissa, Mom, Aunt Lisa and Joe (about 1986)

After 27 years with the Portland Fire Bureau, my dad is retiring!  He started out working 2 jobs and going to school for fire science, when I was a baby, and finally got a position "on the line" when I was 3.  He worked as a fire fighter for years but because the "24 hours On/48 hours Off" schedule took him away from our growing family, he decided to work in the Fire Marshall's office for the rest of his career.  He has been a Fire Inspector, HazMat Specialist, Sprinkler Specialist and other positions over the years. I can't remember them all! He's done inspections, alarms, plan review, taught courses at community college, worked his way up to President of the Oregon Fire Marshall's Association, and received the Bronze Medal of Valor in 2005 for rescuing a man from a car fire.

Lukas and Papa (2008)

I remember at least two, "Take your child to work days," that I went to work with Dad.  I was so proud of him and I felt so important as I followed him around his office and the city of Portland.  I've had my picture taken with the big fire coat and helmet on, and now I have pictures of my own children exploring Papa's fire engines.  My favorite memory of my dad, the fire fighter, was in Preschool.  My dad came to talk to the class about fire safety.  He had us all count to 10, while he hid behind the stage curtain and put all his gear on.  He came out so fast, I thought he was a super hero!  It was truly magical to have a fire man for a daddy!

Bethany, Haylee, Lukas, Hannah, Jenna, and Dad (Papa)

So, here's to the next chapter in your life, Dad!  Who knows what great things God has in store for you!  You have been a superb Fire Man, an exceptional Husband, and the greatest Daddy!  I love you so very much and want to thank you for your commitment to the safety of our city!

Jaron Meets Daron

When we were given Jaron's dignosis, the doctor had never heard of Miller-Dieker Syndrome.  He printed out all the paperwork from his medical books and handed us a copy.  That packet plagued me for days.  I wanted the information but I didn't want to accept what it was telling me.  There were 2 pictures of children with MDS and it actually scared me to look at them.  It was where I was at emotionally in the process of learning horrible news about my baby.  I dreamed of being a nurse.  I love all the technical medical terminology about various medical conditions.  But when I'm reading a medical report about a syndrome my own baby has, its a totally different feeling.  It was sickening to read.  Slowly, I was able to read, reread, and then process the information.  Brian and I felt all alone because not even specialists had heard of or seen a child with Miller-Dieker.

In February, another little boy was born in Portland with Miller-Dieker Syndrome.  It's crazy how news like that can make us so excited and yet give us a devastated, heart-broken feeling in the same moment.  This meant we were not alone.  But it also meant another family was going to be traveling the dark, scary, overwhelming path we had just begun.

Through a series of crazy miscommunications (HIPPA regulations and computer issues), we were finally in contact with the family.  The kids and I went to visit at their house on April 13th.  I think Katya and I were the most anxious to connect.  Both of us loving moms, committed to the well-being of our children, painfully enduring the unknown path of parenting a very fragile child.  They have 5 children.  Her 4 older children and my 3 were fast friends, and even the baby boys seemed drawn to each other quickly.  Lukas was off playing light sabers with David (age 11), Daniel (9), and Deric (3).  And Haylee and Hannah loved playing dolls with Dasha (5). Separating the new best friends was very difficult at the end of our visit!  We plan to reconnect soon at a park or our house, this time with the dads!

 

They had struggled to find another "D" name that fit their new son and before they knew about Jaron, they decided on the name, Daron!  And if all these similarities weren't enough, they homeschool as well!  It was such a special gift to meet this sweet family and share stories and experiences that no one else quite understands.  We are both so thankful to have the Lord to depend on through these difficult times.  It was healing for me to be able to share what experiences we had been through so far, to help them better understand what to expect.

Each child is so different in the ways the condition affects them, but there are several commonalities.  No parent is ever ready to watch their child suffer, so Daron's family is especially concerned about the onset of seizures.  This is one of the most prevalent conditions with Miller-Dieker, and also the part filled with the most questions, decisions, and doubt.  I HATE seizures.  Please pray for this sweet family as they too experience the struggles and the joys of life with a special child.  We both agreed that our special little boys are a precious gift and we want to enjoy every moment we have with them!

Sick Baby Boy

Well, he's finally getting better now, which is why I have time to tell about it!  All 4 kids were hit with the same virus on the same day.  The 3 big kids were out at the Friant Farm for Vacation Bible School.  Nothing like summer camp AND staying at Papa and Grammy's house for 5 whole days!  The kids love it and Brian and I take on a big task at home that is otherwise impossible with a house full of kiddos.  Remember last year we built the play structure in the backyard. It was a fun surprise for them to return to.  


This year we sanded down and varnished our maple staircase that had never been finished.  Wow! This was a huge task!  Many late nights, sore sanding arms, dust-filled lungs...  but the silky, shiny finish is worth it all!  

The kids all had runny noses and a cough this year while they ran, sang, and played at the Son Surf Beach Bash VBS!  Papa Albaugh came with me to surprise the kids at their closing ceremony.  He had just returned from a 2 month long ministry project in Zambia.  (To learn more about NesTeam International click here.)  By the time they returned home (day 5), Lukas, Haylee and Hannah's noses were mostly dry and their coughs were clearing.  Not so for the baby boy.  He was just getting warmed up.  

Jaron's virus turned into non-stop coughing, crying, rapid breathing, about 2 weeks in.  We ended up at the Doernbecher Children's Hospital ER on a Sunday night.  The nebulizer treatments, suctioning, steam shower, and chest thumping therapies were not helping.  Although I packed my bags for a hospital stay, we were only there for 3 hours. (1-4 a.m. Thankfully, my mom and little sister came to let me take a nap the next day.)  The ER immediately gave him a nebulizer treatment called DuoNeb.  It has Albuterol and Atrovent to open up the lung airway quickly.  They also gave him a steroid called Dexamethasone to help reduce the swelling in his lungs.  He calmed down for the night, we were able to go home, and then see his pediatrician in the morning.  I was thankful that he never got a fever and he was able to find relief with the new scheduled nebulizer treatments that were started in the ER.  We are on week 4 and the boy is still coughing and junky (needs lots of suctioning), and regular nebulizer treatments (Albuterol and Pulmicort through inhalation system) through the day and night.  But he is SLOWLY improving.  Thank You, Lord!