More Milestones

Below is Mike's most recent Facebook update:

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Hello Friends and Family...

I just wanted to give a quick update on Marcus...

Marcus has been doing well...Really well!!!

He 'started' crawling on Monday, meaning that he was able to move himself about 3 or 4 feet to go after one of his favorite toys. He's not in the 'All Fours' position. He's more in the soldier belly crawl position. The reason is that his arms are not quite strong enough to hold himself up and he hasn't really developed enough strength and balance in a kneeling position. But we're working on that right now. So his arms are just by his side as he primarily pushes with his legs. But it's just so crazy when we first saw him do this, purposefully, to go after something he likes and sees. We just need to build a little bench press so he can start benching...=)

Today our physical therapist had Marcus lean on our ottaman to stand. Marcus put his hands on his knees to balance himself and then eventually was standing, leaning on the ottoman, for about 10 minutes. We caught the last few seconds of that one on video...

This morning he actually 'signed' "PLEASE" to Sue with purpose and with much vigor. He just wants his food. He's been feeding himself more but if you're around he'll get lazy and expect you to feed him.

All of these developments are very commonplace for a normal child, but for us it's like the craziest and most exciting thing. It helps us to open our eyes and to remember that all that we have, from the smallest thing to the biggest thing, is all God's grace. We're definitely learning to slow down and enjoy every little moment we have with Marcus. Man, we're just so blessed to have Marcus and we love him to death!!!

On aside note I ran across this example of what a person with Retinitis Pigmentosa may be seeing. So this could be our little Champs perspective. Again, this is just an example. Could be better, could be worse...



From what I've read and heard from our therapists children with this disease usually learn to work through their lack of vision to get by on a day to day basis. Marcus definitely seems to be working his visual situation well. He knows what he wants to look at and let us know when we're in the way (while watching his favorite TV show 'Peep and the Big Wide World'). He knows when mommy or daddy or the sweaty Audrey enters the room. It's humbling to think, "YES, my son sees my face and wants to come to me." Even for this small thing, we're so thankful knowing that there are children with this disease who have been born completely blind have never seen their parents.

So if you run across Marcus and he looks at you and then turns away, there may be another issue...=)

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Yes, we are so excited for all these latest achievements!  Tonight at dinner, he signed "Please"  the most he ever has...with both hands and a huge grin too!  One time, I prompted him by asking, "What do you say?" and then he did it.  Is that high level communication or what?   We knew for a while that he could do it, he's just the most stubborn little rascal we know and now he's finally doing it when WE want him to, not just when HE wants to.

There are so many ways God has blessed us ever since Marcus' latest diagnosis.  We will eventually share with you more of the details and how in the world He has given us more joy than ever.  But we'll leave that for another time.  Instead, I wanted to update you with some recent pictures.

First of all, THANK YOU for all of you who prayed for Marcus on the morning of his ERG.  It was a long drive up in the rain to Hollywood and many more hours of waiting after that.  But Marcus did GREAT as you can see from the pictures.  Our little eater who normally gets fussy if he doesn't get breakfast in time didn't fuss or whine one bit even though his first meal that day was 20 hours after his last one the night before.  Only by God's grace and through your prayers.

Here he is playing with the toys in the waiting room.


Audrey was super cooperative too, and didn't complain at all.  But she got really sad when they started putting the drops in Marcus' eyes because he was protesting so much.  She's protective of her little man.  She also gets into fights with the nurses at his pediatrician's office because she doesn't want them to give him his shots.


Marcus and Daddy on the hospital bed.  I think Marcus is handsome even in a hospital gown.


A few months ago, Marcus learned to drink from a cup by himself.


He recently started pushing himself backwards on his car too.


Family time with Audrey...baking brownies with Daddy and enjoying them together with ice cream.


Mike took her ice skating recently and it was pretty hilarious.  Mike eventually took off his sweatshirt because he was sweating up a storm.  It was no easy thing carrying Audrey around and around on the ice!  She didn't last the whole session (which cost an arm and a leg), but it made for good memories!


This past Christmas was the best we ever had.  We had the sweetest time worshipping Christ with our church and friends.


I leave you with a videoclip that makes me happy.  I LOVE it when the kids laugh together.

 

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.