Update

I'm pasting a note that Mike wrote as an update on Marcus and the results of his ERG.  We thank you all for your love and prayers.  Most of all, we are thankful for Christ, who bore our sins on Himself so that we can be God's children.  The Gospel is our hope.

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Hello Family and Friends...

It is with a heavy heart that I write this tonight.

Our baby Marcus has been diagnosed with "Retinal Dystrophy", more specifically "Retinitis Pigmentosa". The ERG test showed that Marcus's retina is not functioning as it ought to. The doctor said that his retina is pretty much not working, if he had to put a percentage it would be some where between 10% to 15% functioning. This means that Marcus basically has no peripheral vision. He has a very limited scope of vision, kind of like tunnel vision and he's slightly near sighted. Glasses will help him some time in the future but as of now it would be too hard to have glasses since Marcus isn't mobile and so forth.

So what this means going forward is that Marcus will eventually lose his vision. To what extent, we don't know and can't predict. We also don't know how fast this degredation is going to occur. This disease can progress really fast where Marcus could be affected immediately, or in some cases progress slower where he would have sustained vision, or what he has now for years before anything starts to happen. In some cases people have had their vision sustained into their adult life.

Losing vision can range from partial blindness to complete blindness or loss of color, clarity etc...So the worst case scenario is complete blindness.

This disease also has no known, proven cure right now. So now our little champ has two uncurable syndromes/diseases.

So as you can imagine it's crazy hard to take all of this in. If Marcus didn't have Joubert but had Retinal Dystrophy that may have been a little bit easier. But because JS causes developmental delay in so many areas and then on top of that have vision issues that could hinder his development makes it that much harder for us.

The one good thing is that Marcus doesn't have any pain whatsoever. You guys have seen him, he's a very happy child and we're thankful for that.

So right now Sue and I are pretty exhausted both emotionally and physically. But I can honestly say that we are doing well and it's all because of God's faithfulness in directing our hearts to His awesome Gospel through His servants.

We have been so refreshed, encouraged and blessed to be the recipients of so much ministry and service from all of you.

Sue and I want to especially thank Pastor James and his family for taking us in on Monday after our appointment. Thank You so much for serving and loving us. We love and praise God for your family. We're really glad that you guys are back!!!

There's a lot more I want to write, but at this point I don't think I have the capacity to articulate all of my thoughts. It's still too raw and fresh.

We covet all of your prayers...

Reschedule

I know many of you have been praying for our ERG.  It was supposed to be today, but through some mix-up at the hospital (and by God's sovereigny) it has been rescheduled for Monday, December 15th at LA Children's Hospital.

Please pray:

1. That God will graciously sustain Marcus' vision for the rest of his life.

2. That Marcus will do well with the fasting, long car ride, gas mask, and IV (not his favorite stuff).

3. That we will not be anxious, but trust in the Lord joyfully.

4. That we will sincerely respond to whatever the outcome is with worship.

Thank you!

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.

Milestones

This past month has been particularly difficult for a variety of reasons.  And truthfully, I have not responded to all of God's dealings with us with a steadfast faith and humble contentment.  In fact, I have been selfish and prideful to the Lord in many ways.  I have felt that I know better than God how to deal out our cards, that I can find better ways for our lives to work out.  I have desired ease and comfort more than the nearness of God at times.  I've succumbed to anxiety, fear, despondency and anger about Marcus' condition.  I've felt like a child wanting his own way, rather than trusting that my Father's ways are ultimately the best.

But even through weak faith and selfish pride, the Lord is so gracious.  You see, in the middle of an especially prideful week, God showered His blessings on us.  Marcus started to reach several milestones back to back.  One day, he sat by himself for more than an hour without falling backward, completely content to play with a variety of toys.  Since then, he's really been able to sit up for long stretches of time.  He's also been reaching for and getting into things so much now that I have to be careful where I place things...which is a problem I'm glad to have!  He also learned to clap and he gets so excited that he can do it all by himself, and even on command.  He has also become a genuine babbler, making sounds like dada, baba, mama, nana, vava, etc.  So in the span of a few days, Marcus has progressed in his gross motor skills, fine motor skills, speech, and receptive communication.   God didn't have to allow this to happen this past month.  In His mercy and grace, He reminded my wandering heart that He is good, that He is faithfully listening to our pleas, and that He is lovingly caring for us even through the dips and valleys of our lives.

Raising Marcus, I've come to see that pain goes a bit deeper, but that joy also rings a bit louder.  Every milesone reached is a living display of God's goodness.  Romans 8:32 has been on my heart a lot recently.  "He who did not spare His own Son but gave Him up for us all, how will He not also along with Him graciously give us all things?"

Here's our Champ in action:



Can I touch that?



Private drum lessons with Daddy



Of course, no xanga entry is complete without an update on our Audrey.  There are so many ways she's been a blessing to us.  Last month, the poor thing had over 100 bites on her body.  She was such a trooper through the whole ordeal and we're so thankful for that!



We're also learning that she's got some genuine musical genes.  It's neat to hear her singing along with worship songs, singing as if she knows all the words and chord changes.  She knows how to appreciate a variety of musical genres as well.  One night, walking through downtown Disney, she noticed a street performer who was singing and playing the blues on his guitar.  Audrey got real excited and said, "Mommy!  Mommy, look!  It's John Mayer!!!"

And here she is, doing her thing at Yogurtland.

Psalm 23

Just wanted to share some of the ways God has led us to green pastures and still waters this past month.

First of all, the Lord led us (by the prodding of loving friends) to connect with other parents of kids with Joubert Syndrome.  We were very hesitant at first for a variety of reasons, but we thank God for what has turned out to be a tremendous blessing.  We have joined an online family of parents who are going through the same things as us in caring for a child with this rare condition.  By God's grace, everyone has been very encouraging and their stories have touched our hearts deeply.  We've found many examples of joy, contentment, perseverance, love for others, love for their children, and an unswerving love for Christ despite deep pain.  God knew exactly what would encourage and comfort us and we are so thankful.  It's also been great to hear of older kids with JS who are doing well and overcoming great difficulty with a fighting spirit.

This month has been the start of a new phase of Marcus' therapy.  His OT sessions are no longer at home, but at the center, where he can take advantage of more equipment.  We're grateful that it is close to home, and that so far, he's been very cooperative with everything the therapist has him doing.  Another praise is that Audrey is still excited as ever to go with Marcus to his therapy sessions and play with all the equipment as well.  By the end of the hour, they're both sweating. 

Here's an example of one of the things he does during therapy.



Secondly, the kids also got to get their pictures taken by Sohee.  She didn't know it at the time, but she was ministering to me SO much by taking photos of Marcus.  I knew that it would be a little tricky taking him to a studio, since he can't really sit up unassisted yet. I dreaded having to explain to the photographer and potentially see him fall and cry...which would have made for a very unhappy and stressful picture experience.  But Sohee was so skilled, so patient, and she really captured the kids so beautifully.  Audrey looked like such a little lady and Marcus looked so strong.  It was really a delight and we're thankful for Sohee's talent and love.



Seeing my sister run around is the funniest thing in the world!



Thirdly, we had the extreme privilege of attending the Worship God Conference with Dan & Minna and Frank & Sherie.  The elders graciously allowed us to go and not only that, they sacrificially cared for our kids for almost a week!  We really had a spiritual retreat while we were there.  It was so sweet to worship with undistracted hearts and fellowship together.  Personally for us, what we came away with (besides the musical stuff) was a greater desire to love God more, love others more, and cultivate greater humility in our hearts.  Words can't really describe what a huge treat it was for us.



Below: Frank & Mike admiring the indoor gym.



Dan & Minna enjoying some Sovereign Grace coffee without their 4 kids. 



Fourthly, we celebrated 6 years of marriage this month.  Thinking back on our wedding day, I was so happy, but a little oblivious to life and all that life would throw at us.  I underestimated God's discipline of us and how He could use trials to sharpen us and reveal the depths of our sin and our ultimate need for Christ. We're thankful that along the way, He has led to green pastures and still waters, restoring our soul.  It's eye-opening that He does all this for His name's sake.  As long as He is with us with His rod and staff, we have nothing to fear.  This past month has really been an example of Psalm 23 in action for us...how loving and gracious He is.

What We've Been Up To

The summer has been full and fun.  Here's a little bit of what we've been up to...

Crying and gettng mad at Mommy when there's no more food



"Are you SERIOUS?  There's really no more!?"



Having fun at the beach - Daddy's company party



Kayaking for the first time



Rehearsing for the Lee Family Drumline



Swimming in a real pool vs. "swimming" in the bathtub



Chillaxing in Marcus' "ride" after a dip in the pool



Celebrating Audrey's 3rd, Lauryn's 2nd, and Daddy's 34th at Chuck E Cheese (i think it's hilarious seeing Little Pat and Little Mike next to Chuck)



Getting McDonald's ice cream after dinner



Yum...that was good!

A Year Ago Today

A year ago today, Marcus was born.  I can't believe our little guy is one year old and that one whole year has gone by already.  I remember the day he was born with much clarity, just like it was yesterday.  I remember seeing him for the first time, so happy to hold him and so eager to see what the Lord would have in store for his future.

While I was pregnant with him, Mike and I had no idea that God was fearfully and wonderfully knitting him in such a special way, that it would cause us to cling to Him for dear life.  How sovereign He is.  It didn't even start with my pregnancy.  It started many many many years ago.  God gave Mike and I, our parents, their parents, their parents, and their parents (etc.) the genetic make-up that would allow Marcus to be born with his condition.  And God sovereignly brought Mike and I together to wed and have children of our own.  So here we are.

Without a doubt, this past year has been the hardest of our lives.  We've had to face so many inner demons and so many fears as parents.  We've had to re-learn our roles in our marriage and wrestle through what we really believe about God.  We're thankful.  It wasn't a year that was all about nap schedules, diapers, and which baby bottles to buy.  God gave us, through Marcus, the opportunity to lay down our idols at the feet of God and say that Christ is better than everything.

It's still so hard. It's still hard to be content with God's will because we so desire the best life for him.  We're fearful of the future.  Will he ever walk?  Will he learn?  Will he talk?  Will his kidneys or his retina fail on him?  Will he suffer emotionally as well?  Of course, we would do anything to ensure a "normal", healthy life for our son.  But at the same time, we wouldn't trade this hardship for an "easy" life.  God has brought us so much blessing and joy despite the difficulty.  It's such a good place to be.

We're thankful for SO many things. Marcus is the happiest baby in town and his smile just lights us up. He is responding to therapy and is making some strides physically.  His vision is also great.  Although he is unable to control his eye movements 100% of the time, we see that he is able to perceive everything visually.  What a praise!  Our therapists are awesome and they totally care for Marcus.  Audrey has also been a super trooper.  She loves to go to the doctor appointments because she gets to play with the toys there and gets a lollipop after.  She also cooperates during Marcus' therapy sessions and sometimes even helps out as the therapist's assistant.  She never complains about the care we need to give to him on a daily basis.  What a joy that is! On top of our kids, our marriage has been a testimony of God's grace.  We've really been knit together in our hearts during the trying times and we've both learned so much about one another and the Lord.  I praise God for our marriage.

We've got 1 year under our belts and Lord-willing, it will be a long road ahead.   When I think about having to persevere, it overwhelms me.  But when I think back on all the grace God poured out to us this year, and the grace He is giving today, I'm encouraged that He will continue to give us His grace tomorrow as well.

Thank you, readers, for your persistent and loving prayers for Marcus, and your care for our family.  We've experienced much grace through many of you.  If you could persevere with us and continue to pray for Marcus, it would be such a blessing to us.

Updated prayer requests:

1. Marcus' health: Pray that Marcus will continue to get stronger physically.  Pray that he will process sensory information well so that he has a greater capacity for exploring and "playing", as this will motivate him with his motor skills. Pray also that his kidneys and retina will remain healthy.

2. After doing some research, we feel that his diagnosis may fit more with a subgroup of Joubert Syndrome called Cogan-type Oculomotor Apraxia.  We are looking to see a different neurologist soon, who may be able to shed more light concerning this diagnosis.  Pray that what we would learn would bring clarity and encouragement.

3. For Audrey:  Pray that the care we need to give to Marcus would not be a burden to her.  Instead, that having Marcus as her brother would only produce more grace in her life.  She has been such a blessing as we're caring for Marcus.  We praise God for her.

4. For me and Mike:  Pray that we would daily abide in Him and daily find our sufficiency in Christ.  Also, that we would not waste this trial, but honor the Lord in it.

The Rollercoaster at Disneyland

Jacob:  We're big kids and we're gonna ride the rollercoaster at Toon Town!  Yeah!  Rock on!

Audrey:  Hee hee!  Yeah, whatever Jacob said!

Lydia:  Uh, not so sure about this guys.



Yay, we're so happy to get on the ride!



Mrs. Jane:  Smile for the camera, Jacob!

Jacob:  Yeah!  Rock on!

Audrey:  Uh, I guess we're really going on.

Lydia:  Can we have a moment of prayer before we take off?



Mrs. Jane:  Okay, we're going up, so raise your hands, everyone!

Jacob:  Yes!  Yes!  Yes!

Audrey:  Okay, I'll raise my hands, I guess.

Lydia:  Hey, this isn't so bad!



Jacob: Not so sure about this, but gonna try to keep rockin'.

Audrey: Uh...uh...uh

Lydia: This is going very very fast, but I will try to smile my way through it and have joy in the Lord.



Audrey:  Wow, it's hard to keep my head up while holding on for dear life.

Lydia:  Trying very hard to maintain my spirit of joy.  I know that God is in control of all things.



Lydia: Whew, I'm glad that's over.  God was so faithful to protect us.

Audrey: I don't know what to say.

Jacob: Rock on?