Thursday, January 21, 2010

Thankful Thursday

1. Thank you, friends, family, and church family, for your encouragement to us.  I was literally brought to tears by all your comments, emails, phone calls, and comments on Mike's Facebook after my last post.  Your prayers and your love for us help to lighten the burden on our hearts and bless us tremendously.  We can't imagine going through our trials without you.

2. I'm also incredibly thankful that our mid-week care group started up again.  The women in our group (Allison, Denise, Amber, Karen C., Jenny L., Joan, & Angie) always encourage me and allow me to share openly and I always leave more cared for than anything I offer to them.  Seeing how the Lord is uniquely crafting lessons of love for each of them also blesses me beyond words.  It is truly a means of grace and I'm so undeserving of the friendship and love of these women.

3. I'm very thankful that Audrey got to start her ballet class.  She had been telling strangers at the store that she would be learning ballet, so it was good to finally get it started.

She had a hard time getting to the class because she was complaining that her tights were too tight.  But I told her they're called tights for a reason, and that you have to make sacrifices if you're gonna be a ballerina.  But once she put her ballet shoes on, she forgot about her tight tights and did jeté's across the waiting room to get warmed up.  She also wanted to show me one of her moves before the class started.  "Look, Mom.  Look, look, look at me," she said, while doing a graceful grandma kimchee squat.

I was so happy to see her enjoy the class so much.  I noticed that she's pretty coordinated and that she has the buffest bottom and legs in the class.

I was shocked that after doing a lot of this:

And this (I was so scared she wouldn't stop jumping and not give the other girls a turn):

She actually ended the class with no sweat dreads

But then I remembered that she had already drained her body fluid the night before playing Wii with her dad.

She lost even more fluid through her eyes after getting demolished by her own father on Swordfight.

4. Finally, I'm SOOOOO thankful that Marcus is recovered from the Rotavirus.  Thanks to all who prayed for him!  He felt like this for 8 days:

But now he feels like this:

And this:

So good that he feels like doing this:

And Audrey has her playmate back

She's glad she has someone to find treasures with

And someone to play house with

And someone to play duets with

These duets sure look like a lot of fun

But maybe he'd rather play solo

Monday, January 18, 2010

Loving My Father

Sometime last month, we started to notice a strange muscle twitch that started on one side of Marcus' body.  It was different from his usual happy/excited arm flapping which his therapists term "overflow energy".  This twitch was sometimes a jerking motion that happened involuntarily and at random times quite frequently throughout the day.  It didn't seem to bother Marcus, but was definitely noticeable to us and to his therapists.

Because jerking motions are often related to seizure activity, and because seizures are not uncommon with those affected with Joubert Syndrome, we were quite worried, anxious, and discouraged.  These were my thoughts:

"Why is this happening to him?  What if the twitches get worse and he can't function day to day?  Is he having seizures?  Will he have to do an EEG?  Will he be on medication?  Will this medication have side-effects?  He has been doing so well lately, he's not supposed to face another obstacle like this.  Why is God allowing this?  Will Marcus be okay?  Lord, I don't want to see him suffer.  Please take this away.  I'm so depressed.  Why does my child have to face issues like this?  Why does it have to be so hard for us when everyone else's kids are running around doing fine?  My heart is breaking all over again for my son.  Lord, would you please lay off for a little bit?"

During this time (as usually happens during our darker moments), Mike and I got to talk after the kids went down for the night.  God had put a few things on his heart, while my heart was also desperately trying to find solace in the situation.  By God's grace, here a couple things we concluded after the conversation:

1. Although we've grown a little bit in loving Christ, there is a subtle deception in our hearts that we've missed.  We wanted to trust in Him for the things He could give us (comfort, Marcus' progress, security that everything will be okay), rather than trusting Him because we love Him alone.

2. While Abraham was fully prepared to sacrifice Isaac because he loved God so much more, we've been trying to hide Marcus from God and saying, "Okay Lord, you've done enough and it's already very hard.  Please leave our son alone now and only let positive news and progress come our way."

3. There have been thoughts of loving God out of compulsion.  "Christ died for me, so I should love God back!"  rather than "Oh, how I love Jesus...Oh how I want to love Him more!"

4. Although we've been able to say that Jesus is better than the trials we've faced the past few years, we have yet to sincerely say that Jesus will always be better even if our nightmares come true.

In a nutshell, I've seen the holes in my love for Christ.  But now, I want so much for God to increase my love for Him and Him alone and not for Him plus a guarantee that Marcus will be okay.  I pray that God would make my heart so fervent for Him, that no amount of suffering my son would endure could diminish it.

And then I remember God...that He was the father who endured the most because Jesus was the son who suffered the most.   Christ suffered the most agony in being forsaken by His father on the cross, while God also suffered the most anguish in having to deliberately turn His face from His beloved who was crying out to Him in the time of greatest need.  God was the one who crushed His own Son.  When Christ begged God for a way out of the suffering, God didn't extend His fatherly care to save Him.  Gosh, the torture it must have caused God's heart!  I sometimes think that people we know can't adequately understand the pain in our hearts for Marcus, but I forget that God understands because He suffered the most as a father.

And why did He do all this?  So that His love for undeserving self-absorbed sinners like me could be put on display.  Because God bruised His own Son, now I get to call Him Father too, just like Jesus does.  It's unbelievable.

I think of how Audrey whimpers when Mike leaves the house because "I just want to BE with you, Daddy!"  Or how if given the choice between playing with toys or cuddling with me all day, Marcus would choose to just be with me in a heartbeat.  That's how I want my love for God to love Him simply because He's my Father.  The One who created me, forsook His own Son for me, forgave me, and lavished me with His love.  To love Him even if all my worst fears come true.

This quote sums it up for me and I'm praying that it would be true in my heart:

We have to know, to be assured, that God so loves, cherishes, and delights in us that we can rest our hearts in him for our significance and security and handle anything that happens in life. (Tim Keller, Counterfeit Gods)

Thursday, January 14, 2010

Thankful Thursday

Thankful Thursday is a common practice of gratitude that is widely known in the blogosphere.  Thought I'd give it a try today since there's much to be thankful for.  I might not do it every week, but we'll see how it goes!  Note:  there may be some Unthankful Thursdays too, depending on how I'm doing.  :-)

1. Thankful that although Marcus is battling the Rotavirus this week, that the rest of us are healthy thus far.

2.  Thankful for Mike.  He's pulled triple duty this week:  full days at work, came home and helped with the kids, worked again on conference calls until past 3 or 4 am, helped to console our sick little guy through the night, helped out again in the morning.  And the best complaining about being tired or anything.  LOVE IT!

3. Thankful for Franklyn, Mike's boss, who urged Mike to work from home today so that he could watch Audrey while I took our miserable little fella to the doctor.  What kind of boss does that?  LOVE IT!

4. Thankful for the recent change of insurance that has allowed us to go back to the doctor that has known Marcus since birth and who was a huge support to us during the time of his diagnosis.  She was ecstatic to see me and him again today and really gave us direction regarding some recent health concerns we've seen in Marcus.  (I"ll write more about this in another post.)

5. Thankful that although Marcus is very tall, that at least he's skinny.  His only method of consolation this week was to be held or to lay directly on top of me.  Kind of does a number on me especially during the night, but at least he's 28 lbs and not 40!

6. Thankful for another opportunity to teach Audrey about racial/cultural tolerance today after she loudly asked the Vietnamese waiter, "Why do you TALK so funny?"

7. Thankful that Mike just called me right now and said he's at the donut shop and is gonna bring me home a treat.  LOVE IT!!!

Monday, January 11, 2010

God's Gifts To Audrey

We went to a new park today and Audrey went wild.  Once she unbuckled herself in the car and saw the door open, she busted out like a thoroughbred and never looked back.

She did a lot of this:

And this:

And this:

And a crazy lot of this:

By the time I told her it was time to leave, she looked like this:

45 minutes in the January sun made her turn 3 shades darker and secrete half her body fluid through her head.  Does she mind that she has sopping wet dreads covering her face?  I don't think so.  Does it bother her that marble-sized beads of sweat are stinging her eyes?  Nope.  Is she self-conscious that all the other boys and girls are completely dry?  Nuh-uh.

It's confirmed.  God has uniquely gifted our Auj with boundless energy and boundless sweat.  She is fearfully and wonderfully made to be just like her father.

Lest you think this is a recent phenomenon, here is a flashback to Auj at 13 months.

I guess reading books inside our air-conditioned home was enough to cause a lot of perspiration.  Oh Auj, no one sweats like you do.  Love you!

Friday, January 8, 2010

Winter Joy

It's the middle of winter, but here in Southern Cal, we get to go outside and play.  I don't see my kids complaining!

Saturday, January 2, 2010

The Wedding

Julie & Mark's wedding was an incredibly encouraging time.  I was SO happy to be there and felt SO privileged to have a relationship with them.  We left the wedding extremely thankful for them both, extremely joyful that God has brought them together, extremely blessed by how they honored the Lord and others during their special day.  I also don't think I've laughed that much at a wedding before.  Pure joy!  (happy sigh)

The kids also did well, by the grace of God!  Marcus was up that day since 4:30am without taking a nap, so needless to say, I was nervous that he would have a scary meltdown.  But I guess he was so happy about Auntie Julie getting married, that he was happy the whole day.  He and Audrey walked down the aisle with Daddy's help, and we were just so grateful to participate in the wedding.  Marcus finally crashed at the reception and didn't wake up until the next morning.  I call that a success!

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