Just Some Recent Thoughts

The past 2 weeks have sort of been like living in a cloud in a thunder storm.  Marcus' sleep at night (or lack of sleep) has been dreadful.  We've pretty much had to wrestle him multiple times at night to get him to sleep without injuring himself in his crib.  Sleep deprivation plus the unexpected concerns from our neuro-opthalmalogist that Marcus could be showing signs of retinal failure have really humbled us.  But we are seeing hope that his sleeping is getting better and we are not overly anxious about the ERG to test his retina, which is coming up soon.  Praise God for so many prayers.

I finally got a full night's sleep last night, so I thought I would jot down all the thoughts I've been having and tidbits of conversations I've had with Mike, my sister, some dear friends.

No more care-free living

There's been an underlying joke in our home that we are old folks now.  We look at each other and we don't see the young married couple anymore.  Yes, we are still young, but there's truth to our joking.  We feel like we've aged quite a bit since last year.  We've come to realize that the easy years of our lives are over.  I remember just a few years ago, living so light-heartedly.  I was consumed with what I wanted next in life, forgetting that God's already given me way too much.  Now, taking the kids to Disneyland is not the same anymore.  Sure, we still laugh and enjoy life and have our silly moments.  But through it all, there's this heavy weight in our hearts that won't go away.  It's a perpetual reminder for us that it's blessed to be poor in spirit, because then we have room in our hearts to receive the kingdom of heaven.  We're learning that this life isn't meant to fulfill us, but draw us nearer to the One who satisfies abundantly.  Uncertainty and holding onto the absolute end of the rope are good things that make us desperate for God alone.

Hold them loosely

Even if Marcus' ERG has a good outcome, that there is no retinal failure and that the doctor's hunch was wrong, we still have a lifetime of tests and more tests.  Retinal dystrophy, kidney failure, and liver failure will loom over Marcus' life until he dies.  He may never suffer from them, but as parents, the threat will never go away.  And this is on top of all the other hurdles he has to jump over in life.  But in reality, Audrey's health is not guaranteed either.  Who's to say that the Lord wouldn't bring a debilitating illness to any of our lives?  Marcus' condition is a stark reminder to me that I need to hold both my kids and my husband loosely.  Our lives are in His hands.

Our role as parents

The biggest source of anxiety for us is being afraid that Marcus will suffer and live a hard life.  But I'm seeing that right now, our parents are living out that fear.  They have to carry the burden of seeing their son and daughter go through pain and difficulty, while living so many miles away.  I know it's extremely difficult for them.  Yet I praise God because they've been a huge source of blessing to us.  My mom was sharing with me such God-honoring truth one day over the phone. "Sue, I'm so thankful for this trial in your life.  I see that it's making you long for the right things.  We're not supposed to find satisfaction in this life.  We're not meant to long for and yearn for the things we don't have.  Instead, we are to be extremely thankful for all of God's mercies He's already given us."  My dad has committed to prayer and fasting for three days as we anticipate the ERG.  He told me it broke him to see me suffering, but he encouraged me to trust that God is in control and that he is praying for us with a confident trust.  What godly parents!  Mom and dad, thank you SO much for trusting God and loving Christ more than anything else in this life.  You are such a godly example to us.

So, I'm seeing that as parents, it's not our job to shield our children from pain and suffering, no matter how much we want to.  But we have the privilege of equipping them with the knowledge of God and the Gospel to be able to endure through all of life's heartaches.  And Lord-willing, He will use these trials to expose them to blessings they wouldn't have known otherwise.  Knowing this, I can't sing "My God is so big, so strong and so mighty" with the kids the same anymore.  I want so much for them to really know what the lyrics mean so that they can cling onto that truth when life calls for it.

Respect for those who are suffering

Yes, we are going through trials.  But the truth is, in this world and even in our own community, there are so many who have and who are suffering so much more than we ever will.  To me, these people are like war heros.  They have the scars to prove that they've fought the hard battles.  These people are also the ones who love God and others more than we do, who sing and worship more passionately than we do, who look more like our Savior than we do, who know Christ more intimately than we do.  I read about them or hear about them or spend time with them, and my heart swells with a huge amount of respect and admiration.  To be honest, these are the people I want to hang out with and sit next to and get to know.  I want my seat in heaven to be next to theirs because their lives weren't all about landing the best job or having the best wardrobe or sending their kids to the best ivy league.  Their lives were stripped to the bare essentials and they were given the opportunity to say sincerely that Jesus is better.

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Whew!  I feel better getting that off my chest.  Thank you for indulging me, as all this xanga-ing probably does me more good than anyone else.

Now, on to some updates on the kiddos:

We got to go to Maryland last month to celebrate Mike's dad's retirement.  Thirty years in ministry and he's still going strong!  They plan on helping Mike's uncle as missionaries to Peru starting some time next year.  The weather was a bit cold, windy and rainy, so we stayed indoors a lot.  But one day, we took a walk around their neighborhood and tread on the same foresty ground that Mike did as a mischevious little rascal.  We took our own little rascal with us and she loved it.  We lost most of the pictures we took during the trip, but here are a few that were saved.



Having Marcus as a little brother has been good for Audrey.  As you may know, she is not the most nurturing little girl in the world.  (Audrey, if you ever read this one day, I'm sorry but it's true.)  So it makes me so happy to see her taking care of her little brother in little ways.  She'll help him drink his water and put goldfish in his mouth while they're both watching a video.  If she gets a balloon at Trader Joe's, I'll see her lean over in her car seat so Marcus can reach out and touch it too.  She knows how to make him belly laugh like no one else can.  So sometimes when I'm in the other room, I can hear her do her silly craziness that makes him crack up. Also, when Marcus does something neat like reach out for something, she'll always let me know.  "Look Mommy!  He's doing it!  He's touching it!  He's touching me!"  And when he is having a fussy episode in the car, I'll hear her try to comfort him with "It's okay, Marcus.  It's okay."  Gosh, I love it all!  I love you, Audrey!

While growing as a nurturer, inside she's just a girl who loves to hang with the boys.

1 Peter

Marcus has a favorite book of the Bible.

Fear of Man at the Park

I took the kids to the park this afternoon since they took early naps today.  There were a lot of people there and I immediately noticed a strange feeling in my heart.  I quickly diagnosed it as a fear of man, fear that people would notice that my son was different from the other 17 month-olds.  Would they notice that Marcus couldn't stand, walk, or play with the sand like the other kids?  I didn't want to be noticed, just kind of wanted to blend in with the crowd unassumingly.  I guess that's what happens when I fear what others think of me...I just want to be like everyone else and not cause others to think that I'm any different than them.

But then I put Marcus in the swing and he lit up.  With every push, he squealed and giggled.  Apart from Audrey, who was as happy as ever to be outside and alive, Marcus had the brightest, most joyous look on his face.  Then I realized that I actually wanted people to look at him, to realize how specially different he was from the rest of the kids out there.  I'm not sure if I was applying this right, but if the opposite of fear is love, then I wanted all of the others to know how much I loved my son.

Rather than hiding in a corner, I almost wanted to announce to the other moms that my son had Joubert Syndrome.  I wanted them to know that just a few months ago, Marcus was a little rag doll hanging over the side of the swing, but now he was sitting upright and loving the sensation of going up and down, up and down.  I wanted others to know that the fact that Marcus sat with me on the sand without being scared of the feeling of sand on his feet, was a huge step in his sensory integration.  I wanted them to see how strong he sat up at the top of the slide, and to see his huge smile the whole time I held him the way down.  Knowing that he was different all of a sudden gave me a sense of pride.  The other moms wouldn't know what a tremendous privilege it was to care for Marcus and to receive so many blessings through his life.

I wonder how it will be as he gets older.  I'm sure the fear of man will creep up again when he starts crawling.  He'll be crawling on the ground while the other kids are playing tag.  Or he may even be in a walker while the others are climbing and jumping off the rocks.  I'm sure I'll be facing my fears again.  But I also think that I'll be watching him with so much pride and so much thanksgiving, even if it's with tears in my eyes.  I'm so proud of him, our little fighter.