Marcus Says

I wrote this post a few years ago truly not knowing if Marcus would ever learn to speak. Well, the Lord has yet again answered abundantly and now, at age 4, he is a jibber jabber machine. I never thought I would have to ask him to stop talking, but these days, I’ve even been requesting more “silent time” from him. And it makes me giddy.

Here are some of the latest speech highlights:

“I want to go to the deep dark woods tomorrow.”


Me: Marcus, why do your feet stink so much?
Marcus: (Toes in his nose) Smells like flowers.


His tone can sometimes be Godfather-esque.

Me: Marcus, what did you do at school today?
Marcus: I don’t know. You tell me.

Me: (Helping Marcus after going potty) Eeew, Marcus. Your poo-poo stinks.
Marcus: I want to smell it.
Me: No! That’s gross!
Marcus: I want to smell it!!
Then he makes me help him bend over the toilet to smell the yuckiness.

Me: (doing a silly Mommy dance)
Marcus: (giving me the hand) Stop. Stop dancing.
Me: Why?
Marcus: Because I don’t like your dancing.

Me: Marcus, eat your pizza, please.
Marcus: Use your fingers and put it in my mouth.

Now that he’s learning to talk, I guess I should teach him some manners too.


Thankful Thursday – Perspectives

Today, I’m thankful for things that I haven’t been thankful for before.  They may be things I usually complain about and will probably complain about again, but tonight, God’s given me a different perspective.

1. I’m thankful for bodily functions.

Marcus’ speech is exploding right now and we’ve noticed that he’s got quite the potty mouth.

M: Knock-knock
A: Who’s there?
M: Banana
A:  Banana who?
M:  Banana wants poo-poo.
(Eruption of high-pitched giggles.)

And who would have thought that potty training would increase his vocabulary?

One day, looking in the toilet after doing #2, he said, ” Eeew, stinky.  So much poo-poo.  HuMONgous!!!”

But besides the potty mouth, he’s also a big question-asker now.  We are loving all the  What, Where, and How questions.  My favorite was when our little neighbor friend stopped by yesterday and without any prompting from us, Marcus said, “Hi Reese!  How are you?”  Mike and I just looked at each other and smiled and melted.

2. I’m thankful for a messy house.

I was proud of myself this week for folding the laundry and piling them up on the stair banister like this:

It was a huge accomplishment because they’re usually piled into laundry baskets downstairs and Mike and I have to treasure hunt for clothes every morning.

Before I had kids, I had delusional thoughts that I would always keep my house clean even after having  children.  My kids would be able to eat off the floor because it would be spotless, and I’d pass a white glove test any day of the week because I’d be dusting very often.  The kids would pull out one toy at a time and put it back after choosing another one and they would demurely nibble on their snacks at the dining table and wipe sticky hands on napkins to avoid crumbs and fingerprints.  There would be no messy piles of junk laying around, and I would finish all my chores according to schedule so that strangers could stop by at any time of day and see an orderly home.  Was I on drugs?!

But seeing that my house in real life fails to meet the expectations of my fantasy life, makes me realize that my capacity is limited and my life is full.  There are diapers to change, meals to prepare, a husband to talk with, a baby to hold, a kindergartner who needs help with homework, and a 3  year-old who loves to spoon in the afternoon.  I’ll take that over a clean house any day.

3. I’m thankful that I don’t have a garage.

Believe me, I complain about this one every time I lug the 3 kids and backpacks and groceries on the 32 mile journey from the car to my front door.  Most of the time, the baby’s crying from hunger or a missed nap, I’m impatient with the kids, sweating, and wearing an ugly scowl on my face that looks just like the whining in my heart.  But God helped me realize that we are still living in our 2-bedroom condo neighborhood for some good reason.  And maybe the daily trek to and from the car is actually good for Marcus.  That’s 64 extra miles of walking per day for him that he would otherwise not have if we had a garage.  And maybe that’s why he’s starting to gain more endurance walking and able to take a few small steps independently now.

Check out the first couple seconds in this clip.  Kind of cool, huh?

4. I’m thankful for an anxious heart.

What?  Yes, I’m thankful that I was anxious for the past week or so.  Whenever we have an ophthalmology appointment coming up for Marcus, I get anxious that we will be hearing the news we most dread; that he is beginning to lose his vision.  Due to various circumstances, I was more anxious than usual about an appointment this week.  But what a sweet time it was to lay my burdens down at the feet of Jesus, search His promises, pray with my husband, and be comforted by Him.

The doctor told us that Marcus’ vision remains stable and that he is tracking even better now than before.  This news was a relief to hear, but in a greater way, what encouraged me was the fact that the Lord continues to bring me near through situations like these.  He doesn’t seem to let me wander too far off before He draws me in again to remind me that nothing will separate us from His love.

Thankful Thursday – Summed Up In One

The counting of blessings is ultimately summed up in One.  All gratitude is ultimately gratitude for Christ, all remembering a remembrance of Him. For in Him all things were created, are sustained, have their being. Thus Christ is all there is to give thanks for; Christ is all there is to remember. To know how we can count on God, we count graces, but ultimately there is really only One.  And the radical wonder of it stuns me happy, hushes me still: it’s all Christ.   Every moment, every event, every happening.   It’s all in Christ and in Christ we are always safe and “how will He not also . . .?”

–  Ann Voskamp

I stumbled upon a set of quotes in a blog taken from another blogger/author.  The above encouraged me and helped to sum up my Thankful Thursday for the week.

I leave you with my favorite rendition of “Jesus Loves Me”

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:


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!


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


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.


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.  🙂


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.

Marcus Says

We are SO grateful to report that over the past several months, Marcus’ speech has exploded.  Before, we used to say that he was “vocalizing”.  Now, we can say that without a doubt, he is “talking”.  He still has trouble with many consonants and his articulation isn’t understood by everyone, but he is definitely talking.  Before, we used to have to teach him every new word.  Now, he’s coming up with words spontaneously on his own.  Here’s a short list of new things he’s started to say as of late:

“I love you, too.”

“Mommy, look!  Daddy, Look!”  (After doing something he wants to show us.)

“Noona (big sister) school, Daddy work.”

Counting up to 10 and then backwards down to 1.

Saying his ABCs

Giving a play by play during meals:  “Mommy eat bread, Marcus eat cereal.”

“Singing” his all-time favorite single, “Twinkle Twinkle Little Star”.  Or in his words, “Winkle, Winkle”.  He also knows many words to “Jesus Loves Me” and many other songs.

“My _____________ ” (funny how you never have to teach kids to say “my)

Us:  Marcus, who’s in our family?
Him:  Mommy, Daddy, Noona, Marcus, Baby

Due to his vision issues and his vestibular deficits, he LOVES seeing things that spin and being spun around himself.  So he says “Mommy, Daddy, round round” when he wants us to draw circles, spin toys, or spin him around in a swing.  Mike and I have declared this song to be his anthem.

Humor –

Us:  Marcus, who’s in our family?
Him:  Popcorn.  (Grin and long pause.)  Oh my!

Potty Humor –

Us:  Marcus, what’s your favorite color?
Marcus:  Poo poo  (Grin and giggles)
Us:  Marcus, count to 10.
Marcus:  One, poo,… (Giggles and can’t continue on)

Going to a store, he thinks he owns the place and points to everything saying, “That one, that one, that one.”

When he doesn’t want to crawl or use his walker or trail along the wall, he says “Walk, two hands”  (please hold both my hands and help me to walk)

Hearing Mike’s mix of R&B/Soul music playing, he says, “Daddy music”

Compared to his peers, his speech is still obviously very delayed.  However, we can’t help but be extremely grateful that he’s even able to communicate what he can.  It’s a miracle.  But while I’m overjoyed at his progress, I think of other parents I know who have their own children with varying diagnoses and I know that some of them wonder if their child will ever be able to say “I love you.”  I often wonder why God has allowed Marcus to progress this far while others are still waiting, and my heart is burdened for them.  I think that to the degree that Marcus’ disabilities have afforded us incredible blessing, these other families’ blessings are that much greater and that the Lord is allowing for greater riches than I could imagine for myself.

How To Eat With A Spoon – By Marcus Lee

All that sand-scooping in Hawaii must have paid off because last night, I ate my soup & rice dinner with a spoon.  And I did it All.  By.  My.  Self.  And best of all, with no frustration.  I had a good time doing it, too!

I don’t know why it was such a big deal to my parents though.  My mom was “woo-hoo”-ing and basically screaming at my face while taking 8 billion pictures.  She really needs to chill out sometimes.  It’s like she thought I was never going to learn to feed myself for some reason.  Truth is, I’ve known how to do this for a while now.   But I just tried to let my parents feed me for as long as possible.  That’s how you train them to keep doing things for you.  Now they know I can use a spoon.  (sigh)  Oh well, the VIP treatment was good while it lasted.

So first, put your spoon in the bowl and gently scoop some food.

Carefully bring it to your mouth and stare at all the yummy goodness you will be inhaling.

Open your mouth as wide as possible to ensure that all the rice will make it in.  It may also help you to flare your nostrils at the same time, but this is optional.

Close your mouth and enjoy the food.

Keep taking more bites.

And more bites.

Until you see that your bowl is pretty much empty.  You may then scratch your head and marvel at the fact that you just finished your dinner by yourself.  It is no small feat.

What is even more interesting is that your bowl and spoon can also be used as a drum and drumstick.  It makes a really cool sound.  But don’t go all crazy with this because your parents will get annoyed and tell you to stop.

When you’ve realized that dinner is done, raise you hands and say “All done!”

If your parents have happened to take a video clip of you eating, it’s fun to watch yourself.

But it may lead you to want to take a few more bites.  I’m telling you, watching yourself eat while eating at the same time is kind of a surreal experience.  Try it!

This is how your clothes look after you’ve eaten your meal without a bib.  So ask your mom to take off your clothes in your highchair so it doesn’t spill all over the floor.

Then, you can do a celebratory downward facing dog yoga pose.  It feels so good to do this with only your diaper on.

Got it?  Good!

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?


Big Man On Campus

(warning: 900 pictures coming your way)

Here’s the big guy walking to his classroom

Big sis likes to help him up the little incline

For some reason, he looks a little stoic this morning.  He’s probably thinking, “Mom, why are you taking pictures?  This is SO not a big deal anymore.”

It’s not a big deal that I just made it through the first hallway and past the gate

Well, maybe it is a big deal

Now off to find Room N

Here’s my class…wonder what everyone’s doing in there

Oh my, the paparazzi is still here

If I flash you a smile, will you go away?

Here’s another one

Okay, last one

Here’s my awesome teacher, Ms. Raj

She wants me to cruise around this little enclosed square

Dude, this is no joke, Mom

Yes!  Made it to the first corner

What’s sis doing?  She’s reading braille books.

Alright, this is not so bad

I did it.  No big deal, really.

Now I get to sit and play with some blocks

Mom:  “I love you, Marcus!  I’m gonna miss you!  Have a great day!

Marcus:  “Oh, are you still here?  Uh, yeah…love you too.”

Auj likes to play in the school’s playground each morning

Can’t wait for you to twirl me around!

Wait…first thing’s first

Awww, yeah

Woah, woah, woah


I’m a little dizzy

Wait, there’s a few left in there

Thanks for spinning me around, Ma

I’m pooped!

Time to sign Marcus in and go spend some alone time with Mommy

(3.5 hours later)

Marcus is happy to see us after a full day of school.  Time to walk back to the car!

He’s happy to see that his favorite part of the walk is approaching

Weeeee!  Down the ramp I go!

Who needs Disneyland when you’ve got ramps!

That was serious fun

And I’m a serious stud

The name’s Lee.  Marcus Lee.

Thankful Thursday

1. I’m thankful that we booked our flights to visit my parents in Hawaii this May.  Can’t wait to see them!  I am already feeling the aloha spirit!

2. I’m thankful that Mike found some new music for us to enjoy via a friend at church.  We are loving Brooke Fraser’s song Shadowfeet.

3. I’m thankful that Marcus’ energy level has picked up this week finally.  It took him another week to be himself again after the nasty bug he had and his teachers and therapists have noticed that the real Marcus is back in action now.  Praising God for that.

4. I’m thankful that we got to meet a super encouraging family from Faith Bible Church of South County from our leader’s retreat last weekend.  Thank you, Anne & Ephraim, for blessing us through the short time we had together, and for the latest email you sent.  A true encouragement from above.

5. I’m thankful for my marriage.  Despite ourselves, God has grown us and this week, we feel more keenly our love for one another.

6. I’m thankful that the final season of Lost has started. After I write this, I’m enforcing some cuddle time with the hubster while we watch the latest episode together.  Actually, it’s getting late.  Maybe tomorrow night.

7. I’m thankful that our casemeeting last week with Marcus’ teacher and therapists went well.  They each told us of his progress, where he stands in his development, and what his new goals are for the next few months.  He still has profound delays in his motor skills and speech, but he’s made much progress.  The most encouraging part was hearing that they consider Marcus to be cognitively on track or even advanced.  I guess he even scored in the 48-month level for a few of the cognitive evaluations.  The thing is that Marcus knows he’s a smartypants and gets cocky about it sometimes…that rascal.

8. I’m thankful for some of Marcus’ new milestones.

Gross-motor-wise, he’s crawling on all fours a lot, pulling to stand a lot, and cruising furniture.  The best part is that he’s doing all these things on his own now without us having to prompt him to do it.

In terms of his speech, he’s vocalizing more and uses his “words” a lot which are mostly just vowel sounds.  It gets tricky because he uses the same “word” for several things.  For example, eat, cheese, and please sound the same.  So do blue, juice, and you.  He is continuing to learn new signs (although I have to keep up with all the new signs he wants/needs to learn) and he is really using many of them spontaneously on his own now.  He does get very frustrated when he can’t communicate what he wants,  but we’re hopeful and prayerful that he will be able to express himself adequately when God allows.  I can’t wait to hear what is on his heart!

His fine motor skills are really improving a lot.  Right now, he is really enjoying coloring with Audrey and doing puzzles.  This boy could sit and do desk stuff all day, if I let him.  Several times a day, he crawls to Audrey’s little table so he can sit there with her and work on his stuff. It’s neat to see.

Another thing he’s been doing a lot of recently is imitating.  When he watches shows on TV, he wants to do what he sees the other kids doing.  In one episode of his favorite show “Charlie and Lola”, Lola rides her bike so of course, he wants to get on his.

Then, she plays an instrument and so he asks for his recorder.

Then, she reads a book, so he orders me to  grab one for him too. (Have I told you how bossy this kid is?)

I love it all.  Seeing him grow and develop (at his own pace) has been a joy.  Each new milestone is a true encouragement from God.

9.  I’m thankful that Marcus’ twitching has lessened quite a bit ever since he recovered from his illness.  He still has them, but they aren’t as severe and as noticeable.  We will be seeing a neurologist on Monday to ask about them.  He is a doctor in San Diego who has done much research on the genetics of Joubert Syndrome, so it will be good to talk with him.  We aren’t too sure that he’ll have the answers to Marcus’ issues, but we consider it a good opportunity to be connected with him.

10.  I’m most thankful this week for seeing more rotten sin in my heart.  I’ve found that sometimes, my selfishness and ungratefulness is so dominant in my soul, that the Gospel seems so far away.  I get mad that I can’t have what I want, or I compare my lot to the seemingly easy and gratifying lives of others and I get bitter and discontent.  I ask, “Why can’t I have what that person has?  Why do they get everything they want and why am I left with a gaping whole in my heart?”  I convince myself that Jesus isn’t better than my earthly desires and I start to concentrate on the missing puzzle piece in my life, rather than the full riches I have in Christ.  But then I realize that all this ugliness is so good for me to see because it shows me that I’ve been forgiven of much more than I thought.  The more selfishness, discontentment, and ungratefulness I see in myself, the more I marvel at God’s unmerited love for me….and that melts my hardened heart.  I’m thankful for that.

Psalm 73: 25,26,28

Whom have I in heaven but you? And there is nothing on earth that I desire besides you.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.

But for me it is good to be near God; I have made the Lord God my refuge, that I may tell of all your works.