Thankful Thursday – Marcus’ Milestones

Whenever we think about Marcus, there is a constant tick tock that plays in the background.  Although we never know what will happen tomorrow to any of us, there is a sense that there looms an inescapable cloud over Marcus’ future.  Vision loss, kidney failure, and emotional pain are very real fears we face.  So when we catch ourselves staring at our Champ with these possibilities, we are reminded to be thankful for today.  And so, we are bountifully grateful that right now he is happy, healthy, and daily reminding us of God’s goodness.

In spite of Marcus’ delays and differences, or I should say, BECAUSE of Marcus’ delays and differences, we look at him and think we’ve won the lottery.  Tomorrow is a scary unknown, but today, Marcus is doing wonderfully.  Here are a few things we’ve been marvelling at lately:

Music

It’s become quite obvious that Marcus lives and breathes music and that he is a musical genius.  He recognizes Beethoven versus Mozart and can tell us all the instruments he hears in a piece of music.  Not just drums, guitar, piano, violin, etc.  We’re talking cymbals, oboe, flute, cello, trumpet, tuba, clarinet, and many more!  He also (like Audrey) has incredible auditory memory and knows exactly where he’s heard a particular measure of music before.  So needless to say, he thoroughly enjoyed the first piano lesson I gave him this week.  Thanks to Mike’s mom who already taught him Do-Re-Mi while she was here!

Speech

Marcus’ speech continues to improve and we feel that he can communicate with us what he needs and wants, at a basic level.  And boy, has it helped his frustrations!  I remember writing this post, so perplexed by Marcus’ daily difficulties, and now I’ve realized how much his communication deficits played into that.  The other day, he was playing with my iPod when it suddenly lost battery life and shut down.  Instead of hurling it across the room, he quietly repeated, “Not working, not working” until I came and plugged it in for him.  I responded with a “Thank you, God.”

What joy it is also to hear him tell me what he did at school!  It amazes me that on the way home, he can tell me what toys he played with, which therapists and teachers helped him, what he ate for snack, who he played with, and even if he took a fall and got a boo-boo.  He also tells us what songs he sang at Sunday School.

It’s also sweet to hear him try to console Derek when he’s crying by saying, “It’s okay, Baby.”  But he’ll use that same line when he purposely pinches Audrey, makes her cry, and then sarcastically says, “It’s okay, Noona.”  Why that little…

And of course, there’s his sense of humor:

Me:  Marcus, is there pee pee in your diaper?!  (a bit annoyed because we’re trying to potty train)
Marcus:  (pause)  Maybe

Sensory

Up until the last 8 to 12 months, going out with Marcus was very tiring.  He thrashed about in his carseat during red lights and did the same when idle in his stroller.  He was also very impatient in his highchair at home, at restaurants, and during snack time at school when his food didn’t come right away.  But for some unknown reason, something clicked and he calmed down.  We rarely use the DVD player in the car anymore and he’s even fallen asleep during long rides, which is a miracle!!  And now we can put him at the table and he can sit there patiently for minutes.  SO thankful!  There are still a few other sensory issues he deals with, but are praying for improvement in those areas as well.

Fine Motor

Marcus’ OT at school had to write 2 new goals for him because he already met 2 annual goals within months of starting school.  It’s amazing watching him draw shapes and happy faces and gain strength in his fingers.

Pre-Academic

He also reached a few of his classroom goals early, so now, his pre-academic skills are age appropriate or above.  The only areas of deficit now, are speech-related.  It’s alright…it’s good to keep the smarty pants humble.  🙂

Walking

Although not walking independently yet, he is gaining more of his balance while standing for a few seconds at a time on his own.  We are also able to walk while holding one hand and giving him support with the other.  On the walker, he is getting a lot better at turning corners  and gets so proud of himself for it.

We took a walk around the neighborhood this week and it was a treat watching him explore.  He’s got a thing for plants and flowers and insists on smelling everything.

(yes, he’s smelling grass)

If you told me 5 years ago that we’d have a son with a brain abnormality that caused a speech delay, sensory processing difficulties, a vision impairment, and that even at 3 and a half years old, he wouldn’t be walking independently but that we’d still be thankful, I would have thought you were smoking crack.  If you told me during the first dark 2 years of this journey that we would eventually have peace and joy in our hearts, I still would have thought you were smoking crack.   Don’t misunderstand.  We still deeply mourn over our son.  But the grief is often held up by our Father’s promise that He’ll continue to take care of us if He’s already given us His Son (Romans 8 :32).  And He is taking care of us.  He’s taking care of us today and won’t forsake us tomorrow.

Much Of You

Saturday night, my heart tossed and turned a bit.  Each contraction made me realize that our baby would be coming soon and that we would know within a few months at most, what the Lord’s answers to our prayers would be.  Anxiety crept in, which led me to ask questions that I really didn’t need to ask:

“Will my heart be broken again?  Will I survive seeing another precious son endure challenges for the rest of his life?  How will I hold the pain?  How will we make it financially if we have to fund therapy and medical care for 2 children with special needs?  How will we be able to adequately care for these children, especially if our next is more severely affected?”

On Sunday morning, the Holy Spirit moved in my heart through the lyrics of a song we’ve sung many times before:

How could I stand here and watch the sun rise
Follow the mountains as they touch the sky
Ponder the vastness and the depths of the sea
And think for a moment the point of it all was to make much of me

‘Cause I’m just a whisper and you are the thunder and

I want to make much of You Jesus
I want to make much of Your love
I want to live today and give You the praise
That You alone are so worthy of

I want to make much of Your mercy
I want to make much of Your cross
I give You my life
Take it and let it be used
To make much of You

It struck me that all my “What about me” questions the night before were very much like the first verse of this song.  I was essentially looking at God’s work in this world and wondering how it revolved around MY wants and desires.  The chorus reminded me that God’s work in this universe has more to do with magnifying His Son than in fulfilling my agenda for my life.

My friend Alice shared something during our care group several weeks ago that I haven’t been able to let go of.  She shared her insights into passages in Ecclesiastes;  that there is nothing we go through that is new under the sun, and that God is God and He is the Lord.  He does what He does and our response is to fear Him.

This challenged me to avoid the temptation to glorify my lot in life and the particular trials God has handed me.  It’s so tempting to see the world through the lenses of what I’m going through, rather than realize that perhaps God has His own intentions and plans through the things that go on in my life.  That perhaps there is a greater spiritual realm that I’m unaware of, just like in His dealings with Job.  (Not that my life can compare in any way to Job’s.)  And that my life and trials are nothing too unique in the whole scheme of God’s plan for the entire history of His creation.  Perhaps the details of my life are only  microscopic pieces of a huge puzzle that God has beautifully crafted to magnify the incomparable glory of Christ.  And here I am, thinking so much of my own life and wanting everything to go my way.

And yet, I also can’t escape that my Father deeply cares about my most private cares and concerns while He holds the universe together in His hands.

Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you.  ( 1 Peter 5:6-7)

As much as He cares about famines and earthquakes and floods, He cares about me and all the big and little anxieties that fill my heart.  So while He holds the world together and orchestrates all events in His infinite and transcendent wisdom, He also wants me to cast my anxieties on Him because He cares for me as His very own.  And He loved me so much that He he had the worst affliction poured on His Son so that any trials I own here are at worst, “light” and “momentary” and at best will prepare us for “an eternal weight of glory beyond all comparison.”  (2 Corinthians 4:17)

So all I can do is stand in awe.  My Father is transcendent and beyond comprehension and yet fully interested in the details of my soul.  He orchestrated the history of the world to put Jesus in our hearts.  And what a cost it was to Him!  Today, this is my prayer for myself and for my family: that God will loosen the grip we have on our own lives and that He will use our joys and trials to make much of Jesus.

Anticipation

This week, we’ve started shedding and reorganizing to make room for all the baby stuff.  All this physical preparation is a lot of work, but doesn’t compare to the emotional and spiritual preparation ahead.

So far, the ultrasounds have been very encouraging.  But as I’ve mentioned before, we don’t really know for sure if the baby is healthy.  We never did an amniocentesis to rule out Down Syndrome, and we never got a fetal MRI to find the molar tooth sign that indicates Joubert Syndrome.  This means that all we can do is pray and wait and see what the Lord has in store.

I have faith that no matter what, Jesus will be there.  Even if our worst fears come true, I trust that He will be there.  However, what I’m fearful of is my own heart.  I’m scared to see what will pour out of my soul if we face more challenges with this baby.  I remember the things I felt and the things I said during the darkest times with Marcus:

“I know God is using this for good, but I don’t want what He wants.  I don’t want Jesus.  I just want my baby to be okay.  Why is He doing this to us, to our son?  Why is He ripping my heart out?  Is He just trying to prove a point with me that He’s sovereign?  Well I don’t care.  I just want my son to be okay.  God doesn’t love me, He just loves His own agenda.”

I remember feeling so bitter at my Lord.  I thought it was cold-heartedly cruel of Him to inflict this pain, and yet to see Him ask me to “Consider it all joy when you face trials of many kinds” and to “Rejoice in the Lord always.”  I loathed passages of scripture that asked me to respond to my trials in seemingly impossible ways.  His word burdened me and made me feel even farther away from His love.

But His Spirit gently reminded me of Romans 8:32

He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?

My Father reminded me of His indescribable love shown through Christ.  While I was holding Marcus against my heart, He reminded me that He rejected His own Son.  He crushed Jesus, bruised Him, and abandoned His perfect beloved One at the cross while He bore all of my sin.  So if He gave up Jesus for my sake, why wouldn’t He also lavishly provide everything else I need to live this life unto Him?

It was then that I threw my hands up to say, “Lord, if You want this trial in my life, You must also be the one to give me the faith to trust you through it.  I cannot possibly respond rightly or have joy in all of this.  So if You gave me Jesus, You must also give me the joy in the midst of this pain.  You must be the one to carry me through because I cannot survive this on my own.  You gave me the most precious gift of your Son to save me.  So please, Lord, please provide whatever else is necessary to grow in His grace.  I desperately need You.”

And you know, the Lord answered abundantly.  He’s allowed us to say, “Jesus is better” because through the heartache, we’ve known more of His love.  We’ve been able to cry out with David, “Because your steadfast love is better than life, my lips will praise you.” (Psalm 63:3)

So why am I so anxious about how I’ll respond if this baby faces his own challenges?  It’s because I know the depth of my sin and idolatry, how quickly I desert the One who gave Himself for me, and how easily I forget that Jesus is more than enough.  And so, I pray that the Lord will keep me near the cross and utterly take over my heart because I’m too weak to give it up to Him.  I pray that I’ll remember how He’s generously supplied “all things” and will continue to do so.  He abandoned His Son, but He’ll never abandon me.  Lord, may Your Spirit cause me to remember that.

Acquainted With All My Ways

God has blessed us immeasurably with family, friends, and a church body who love us more than we deserve.  They have carried our burdens with us and have done so much to shower us with love and support as we go through the ups and downs of caring for Marcus.  We couldn’t have asked for more love from more people.  I could devote a whole week’s worth of posts to all the ways our friends and family have cared for us.  They have fed us, housed us, prayed incessantly for us, emailed us, sent us thoughtful cards, visited us, and cried with us.

At the same time, there’s a yearning to have people in our lives who are going through what we’re going through.  People who know the exact heartache we bear.  We’ve found great friends through the Joubert Syndrome group and through Marcus’ school & therapy, and God has really met many of our needs through them.  But among people we already know, there is not one family who is raising a child with a diagnosis similar to Marcus’.  At our church of 100+ kids, Marcus is the only one facing his types of challenges.  Considering the statistics, this is a very rare situation.

We would never want any of our family to have to bear the struggles of special needs and we don’t wish this type of suffering on any of our friends.  Yet why is it that I desire for someone to go through the trenches with me in this world of disability?  I feel that God created us to have this longing for shared experience; to have a common union with others who are going through the same thing.  That must be why there are so many support groups out there for people to find others they can relate to.

I could sit in a room surrounded by hundreds of close family and friends and at the same time feel that nobody can truly understand the weight that is on my heart.  I’ve often felt like an alien and desperately lonely in large groups because there isn’t someone who can say, “I know exactly how you are feeling about your son right now because I’m going through it too.”  But for some reason, God has sovereignly and lovingly not provided that for us at this time.

The truth is that everyone in this world can feel this type of loneliness at some point in their lives.  We all have some issue that we feel is far removed from the common experience.  Yes, I have a son with disabilities, but I have never known the trials of losing a spouse or a child, being in and out of the hospital, battling infertility, living in poverty, facing discouragement on the mission field, living under abuse, or being persecuted by family members for my faith.  Amongst a group of people where I feel like no one truly understands me, the person to my right could be feeling exactly the same way.

Yet what I’ve realized is that having this “lack” in my life is actually a blessing I couldn’t have asked for.

O Lord, you have searched me and known me!  You know when I sit down and when I rise up; you discern my thoughts from afar.  You search out my path and my lying down and are acquainted with all my ways.  Even before a word is on my tongue, behold, O Lord, you know it altogether.

Psalm 139:1-4

When I have a thought that I feel like no one around me can relate to, my Lord is right with me and He is intimately acquainted with all the aching crevices of my heart.  When I can’t explain why I’m sad, my Lord is here and knows my heart better than I even know it.  When I feel like an alien because my experiences are so different from others’, my Lord reminds me that He created me and understands my thoughts from afar.  And not only from afar, but my Lord also became a man so that He would be able to know the whole realm of human disappointment and grief.

Knowing this gives me a sense of great privilege.  It reminds me of intimate secrets between a husband and wife that nobody else is privy to.  All these experiences of “No one in this room understands me” can now turn into “The Lord knows exactly how I’m feeling right now and He is with me and loves me.”  This is a unique encouragement that I am so thankful for.

The Fathers I Know

The special needs community is mostly represented by women and moms, especially in the blogosphere.  And although I am the primary author to this blog, I hope that all my readers know that my husband and my kids’ dad shares a voice in everything I write.  We parent through our failures (just ask our kids…they’ll keep it real with you), and we make more mistakes than anything right we do (we have to ask our kids for forgiveness more than asking them to follow our example).  But on this Father’s Day, I’m glad I get to thank God for the grace I see in my husband that enables him to care for our kids in such a special, special way.  My kids are so blessed to have him as their dad.  I could go on and on about all the tender moments between them that only I get to witness.  But maybe my kids can hijack my blog years later and let them tell you for themselves.

I’ve been thinking about my dad and Mike’s dad this week and was overwhelmed with thanks.  Fathering in our generation is tough.  But they had to parent and provide and lead as immigrants in a whole new land, starting their lives over from scratch.  I marvel at that.  Today, Mike and I get to reap the blessings of all the suffering and toil we’ll never know for ourselves.  And more than anything, we get to live out the answers to all the years of prayer that they poured over us and continue to pour over us to this day.

All this thinking about Mike, my dad, and my father-in-law has led me to SO appreciate that God allows us to call Him our Father.  God didn’t have to do that.  In relation to us, He could have rightly called himself CEO, King, Ruler.  But no, He presents Himself to us as a tender, loving, protecting, providing, and yet majestic, sovereign, powerful father to those who are found in His Son.

I’m thankful for the fathers I know here, who show me such beautiful little glimpses of who my Heavenly Father really is.

Farewell & Bravo

The first time we walked on the campus of BCLC was when Marcus was 4 months old.  It was before his JS diagnosis and before any vision diagnosis.  We didn’t know if he had any vision at all and we didn’t know if his floppy rag-doll body would ever get strong enough for him to even hold his head up.  He also had an intermittent head tremor that caused us to worry intensely and fostered so many questions as to why Marcus was struggling in his development.  Needless to say, it was a time of great anxiety regarding Marcus’ future.  So, the state’s early intervention program sent us to BCLC to be evaluated for eligibility regarding services.

To be honest, I was frightened during our first visit.  I had never seen so many children with little to no vision and other disabilities gathered together in one place like that before.  It was the first time I had seen a little blind girl with a cane be escorted off the school bus and definitely the first time seeing a teacher having to change the diaper of a 5 year-old who couldn’t see, talk, or walk.  My heart shattered seeing all those children because I knew that at one point, they were someone’s babies, just like Marcus was mine.  I wanted to run out with Marcus in my arms, saying, “We don’t belong here!  My son shouldn’t be here with these kids!”  And at the same time, so scared that Marcus indeed did belong there and that he did need their help.

Fast forward 2.5 years and here we are, SO saddened that we have to say good-bye to this place.  Since Marcus is turning 3, the state withdraws its funds for his early intervention services and now we are under the care of the public school system.  Today was his last day at BCLC.  Although he’s only attended school there since September, he has been receiving therapy services through them since he was 6 months old.  And this place that frightened me so much at first, has become a haven, a refuge, and a family for us.  I wish all my friends and family could visit the school at least once to see what a special place it truly is.

I love that everyone knew who Marcus was.  Even if they weren’t involved in his class, they knew his name and knew he was the “smart kid” on campus.  I love that he was a rockstar there.  I also love that they praised all the  kids at school for their milestones.  It was a joy for me to hear how one kid took his first steps, how another kid started really using her fingers to explore toys, and how another kid said “mama” for the first time.

Today was his last day of school and therapy at BCLC and our hearts are FULL with thankfulness to the Lord for bringing so many people into our lives to encourage us and to help Marcus.  Every single one of them always had Marcus’ best interest in mind and they all worked extremely hard to make sure he got what he needed to excel and meet his next milestones.  Countless times, Mike and I have looked at each other with jaws wide open, not understanding why and how these people could love Marcus so much.  All we can say is “Thank you, thank you, thank you!”

We will miss Raj, his sacrificial and loving teacher who helped him work on his goals, and who was patient with him during his impatient moments.  She went out of her way to give Marcus the attention he needed, and the crazy thing is that she does this for all the other kids in her class as well!

We will miss Erica & Talia, the teacher assistants who were always there to play with him, change his stinky diapers, and help him with his projects.

We will miss Chris, his vision teacher who taught him to trail Braille with his finger while reading books, to make the most of his functional vision, and even to use a modified keyboard to begin to type.

We will miss Joan, who first came to our home when Marcus was an infant to treat him as his Occupational Therapist.  She taught us so much about what Marcus needed and she was pivotal in helping us really know Marcus and his unique sensory, neuro-muscular, and vision needs.  She came to us when we were filled with so much anxiety and she helped to comfort us in so many ways.  Out of everyone, she’s been with us the longest and has seen the most growth not only in Marcus, but in Audrey as well!  We love her!

We will also miss Shaneen and Carrie (sorry, no pics!), who helped him with his oral-motor needs to be able to begin to talk, and who helped us realize that he really does understand everything we say to him!

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After our wet-eyed good-bye’s in the afternoon, we ended the day with Audrey’s first ballet recital in the evening.  It was so special seeing our girl all dolled-up for a spectacular performance at the Irvine Barclay Theater.  I can’t believe that our little baby was now dressed in a costume and dancing in front of hundreds of people!  We were SO proud to be her parents and SO thankful to be able to see her grow up right before our eyes.  Unfortunately, the theater prohibited any photography or video, so here are some pics of the big night outside.

Striking a pose before the performance.

A family picture.  Can it be?  Everyone’s looking at the camera and smiling!

Running to greet her fans after the performance.

An “I’m so proud of you” hug from Daddy.

Some “You are so cool” flowers from little brother.

An “I love you” smooch from Gomo.

I got to take a picture with my baby.  We like to call ourselves “The girls” in our family.

Here she is, with her love…her Dad.  They share the same face.

And since we’re the Lees, we had Second Dinner as our after-party.

Mike enjoying his double-double.  Audrey shares the same face with both her dad and her aunt.

Dressing up like a ballerina and topping it off with a strawberry shake.  What could be better than that!

WOW!  What a full day in so many ways!  I’m off to bed with an overflowing heart.

Joy & Grief & Looking Ahead

Marcus has been accomplishing so much recently.  The eating, the standing, the hand-held walking, and most certainly his speech have all been improving in the past few weeks.  We beam with pride and overflow with thankfulness for all these developments that we surely do not take for granted.

And yet simultaneously, there is still grief and sadness.  We are approaching his first IEP next week, which means it’s our first step into the public school system.  Thinking that he’s going “out there into the world” where he’ll be compared with other kids and always measured on a developmental scale, saddens me.  Thinking that he’ll never be just like his peers and that he’ll always be different from them gives me a heart-brokenness that no mother wants to bear.  This week has been especially difficult regarding this grief.

Yet in the Lord’s kindness and in His usual Fatherly fashion, He led me to a wonderful blog post.  This mother wrote down exactly how I felt, and also pointed me to a greater reality.

Does it really matter how Marcus compares to the rest?  Did Christ die for him so that he could be Mr. Popular and fit in with every other boy in Orange County?  Did God forsake His Son so that Marcus could find fulfillment in being accepted by this world?

Philippians 3:20-21

But our citizenship is in heaven, and from it we await a Savior, the Lord Jesus Christ, who will transform our lowly body to be like his glorious body, by the power that enables him even to subject all things to himself.

As much as this world shouts at me saying how important it is, I’m so grateful for this reminder of greater reality…our future glory with Christ.  Marcus won’t have to face his disabilities anymore, and Mike & I won’t bear the heartache of parents mourning our son’s challenges anymore.  All of our difficulties will be restored to never-ending joy.  I pray that the Lord will keep my eyes looking ahead to this most glorious future.

Our Latest Pillow-talk

On a typical day, here is the percentage breakdown of Audrey’s topics of conversation:

I miss Disneyland.  20%
I miss (random family member or friend).  15%
Crazy noises and sound-effects to make Marcus laugh.  15%
What are we doing today?  10%
What are we doing tomorrow and the next day?  10%
What’s for breakfast (lunch, or dinner)? 10%
Can I have a treat?  8%
Can we watch something on TV for Marcus?  7%
Look, Mom, I’m not biting my nails or sucking my thumb.  5%

But on certain occasions, we get to see what else is on her heart besides Disneyland, food, and treats.  Case in point:  another girl-to-girl pillow-talk we had tonight.  I was trying to explain to her that we had to pray for the baby because he could have the same challenges Marcus has.  But here is how she hijacked the conversation…

Me:  Audrey, you know how Marcus can’t really walk and talk like his friends can?

Auj:  Yeah, but he can walk with a walker.

Me:  That’s right, he can.  But he can’t really walk like his other friends can.  And maybe the baby will have some trouble with that too.

Auj:  But when he gets bigger, we can teach him to walk and talk.

Me:  Yeah.  Audrey, do you get sad that Marcus can’t walk and talk?

Auj:  (shaking her head) No.  Who created Marcus?  (not giving me a chance to answer)  Jesus created him.  Is Jesus wonderful or not wonderful?

Me:  He’s wonderful.

Auj:  Who created the birds?

Me:  God.

Auj:  God did.  And who created the flowers?  And Jesus is God.  And he was the best sinner.

Me:  HUH?

Auj:  I mean, he was the best man.  And He died on the cross for our sins and then rose again and went to Heaven.

Me:  That’s right, Auj.  Thank you for reminding me.

Auj:  And Jesus is coming back.  When is he coming back?

Me:  Nobody knows, but I can’t wait.

Auj:  Me too.

Me:  Sometimes Mommy and Daddy get a little sad that Marcus can’t walk and talk.  But when we’re sad…(I was gonna try to tell her that Jesus comforts us, but she had to interrupt me with something very important)

Auj:  Mommy, open your mouth.

Me:  Aaah.

Auj:  You have something in your teeth.

(Uh, end of conversation.)

I don’t know if she really believes the things she shared with me.  But her matter-of-factness was such a rebuke to the anxiety that makes my heart so restless at times.  It’s like she was telling me, “Mom, didn’t God create Marcus and this whole world and isn’t He wonderful?  He gave you Jesus, after all.  And isn’t Jesus with God in Heaven advocating for you and our family?  So what do you have to worry about?  Just take a chill-pill and go brush your teeth because you’ve got your dinner stuck in there.”

Time will tell what Audrey really believes and understands.  But in the meantime, I’ll have to take what she shares and really believe it for myself.

Perinatologist Appointment #2

So after a restless night, and both Mike and I falling asleep while praying for God’s abundant grace today, I’m so thankful to be able to say that God has encouraged us tremendously through today’s appointment.

Since my 1st Trimester nuchal fold measurement was so alarmingly high, the doctor did  a customary evaluation of the baby’s growth to look for other soft markers of Down Syndrome, as well as other risks the baby could face.

Here’s what he found:  The bones measured normal, as well as the nasal bone (both soft markers for DS).  He was also happy to see that the heart appeared normal.  Another amazing find…the nuchal fold measurement is also normal for the baby’s current age.  Based on these findings, our risks for Down Syndrome have been cut by 50% to 80%.  We consider this a great encouragement!

So far, the brain has also appeared normal, but we will see him again in a month, when he will be able to take a better look at the cerebellar vermis…the part of the brain affected by Joubert Syndrome.  Marcus has a mild abnormality in his vermis and that is how he was diagnosed with JS.  Even if the doctor doesn’t find anything, there is still a chance that the baby could be affected.  But we are praying for another encouraging appointment.  More importantly, praying for God to increase our small faith, to strengthen our feeble trust in Him, and to solidify our hope in Christ alone.

This past month, our hearts have been burdened for this baby…with a heavy weight of the unknown.  But we are so thankful for what the Lord has already taught us and allowed us to experience through this miraculous life inside of me.  We are learning a lot about God’s grace…that we need His grace on a daily basis, and that in times of weakness, He seems to give it to us abundantly.

2 Corinthians 12:9-10

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.  For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

I don’t know why He allowed us to get pregnant, and why He has allowed us to be faced with the risks of another child with special needs when our hearts are already so burdened for Marcus.  But boy, do we have much to boast about.  All of our disappointments, fears, and weaknesses force us to rely on the grace and strength of our Savior.  And we wouldn’t trade that for the world.

We are definitely not “in the clear” yet with the health of this baby.  We may not even have a definitive answer until months after his birth.  So we are continuing to ask Him to help us boast in Him day to day to day to day.

On a lighter note, it was so sweet to see our boy again.  He was not shy at all about showing us his “parts” and in fact was very forward about it.  The doctor showed us a shot of his “goods” and said it was his first x-rated picture.  Figures…Audrey has no concept of privacy either.  He was also doing some major acrobatics, or martial arts, or something.  So much so that the doctor jokingly reprimanded him for being uncooperative during the ultrasound.  He looked at us to see who he got it from and all we could say was “Sorry, he’s a Lee.”  The kid is already being a rascal…just like his brother and sister.  🙂

Thankful Thursday

1. While we were away, I was dreading this week.  Waiting for me on the calendar was a full load of therapy, 3 different appointments for Marcus to be assessed by his potential new school, and another perinatologist appointment (which is tomorrow).  I wanted to stay in Hawaii because there, I felt like my trials were halted, although they still existed.  I didn’t want to have to face Marcus’ challenges, and I for sure didn’t want to hear more “bad news” about the health of this baby.  So after we got back, I was depressed and scared about facing the week.

So we prayed for grace, and like always, He answered.  So far, this week hasn’t been as discouraging as I thought it would be.  In fact, Marcus did real well during the assessments and I think he may really enjoy his new school come June.  We continue to pray that  tomorrow’s appointment will be an encouraging one and if not, that God would give us greater faith to trust Him.

Most of all, this passage has been an immense encouragement:

Lamentations 3:21-25

But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.  “The Lord is my portion,” says my soul, “therefore I will hope in him.”  The Lord is good to those who wait for him, to the soul who seeks him.

2. The women of our care group met last night.  I’m always so amazed by everyone’s vulnerability and through their sharing, I see Christ.  It boggles my mind that God loves each of us so intricately and He creates challenges in our lives that are perfectly designed for each of us.  I came away marveling at how sovereignly He ordains pain, and how generously He bestows His love on us…even if we may not understand why we are suffering at the time.

3. Marcus has been enjoying his PT sessions and his therapist has been encouraged by the new things he’s been up to.  Here are some pics of Monday’s treatment.  Notice that he is coming up to stand on his own (pushing off from a couch cushion) and that he is even standing without support for a few seconds!

Pushing off

Lifting up my torso

Almost there…

I’m upright!

This is FUN!

Standing all by myself!

Woo hoo!

Mr. Mark, are you still there?

Ta-da!