Lessons From The Disneyland Man

My sister, our friend Monica, and I took the kids to Disneyland last week.  Whenever we go, we always get a disability card for Marcus so that he can use his stroller in line.  If the lines aren't wide enough to fit a stroller, we can go through the exit and get on the rides as people get off.  That way, we don't have to hold him for a long period of time in the regular line.

We decided we wanted to ride Alice in Wonderland, so we went through the exit, since the stroller wouldn't fit in the regular line.  As we were walking in, a man in the regular line who was noticeably bothered by what we were doing said to me, "You're in the exit."  To spare him the details of Marcus' cerebellar vermis hypoplasia and hypotonia, and because I didn't feel like telling him that I was pregnant and couldn't hold a squirming 30+ pound almost 3 year-old for 20 minutes who had a tough time staying still in a long line, I simply smiled and responded, "Yes, I know we are in the exit line.  We have a disability."

Apparently, he either didn't care for my response or didn't believe me, because he then gave me an ugly, piercing scowl, as if to punish me for doing something egregiously horrible and offensive.  Perhaps he thought we were faking a disability so we could "cut" in line.  I wondered if he would have been kinder if Marcus had more visible signs of disability.  Whatever his reasons were, I was angry.  My sister and Monica didn't know at the time, but this is what I was thinking towards the Disneyland Man.  Had I been taken over by my anger, and had my kids not been there to see me, I have would said:

"Sir, I'm sorry that my son's disability is inconveniencing you, but do you think I WANT to be in the disability line?  If my son could walk and stand in line, don't you think it would be my joy to stand in the regular line waiting just like you?  You don't know how hard it is seeing that my son can't do what yours can, so you have no right to hate me.  Next time, keep your words and ugly grimaces to yourself and just be thankful that you get to stand in the regular line.  And if you need a bigger reminder, meet me in the parking lot at Daisy 3G after you have a grand old time in the Happiest Place on Earth with your healthy kids.  I'll gladly give you a bloody nose and a life-long disability of your own to worry about so that NEXT time, YOU can go through the exit!!!"

*** I know I'm a petite, wimpy, Asian girl, but if you mess with Mother Bear and her family (on a non grace-filled day),  you'd better be ready for a UFC showdown.***

At school, at church, and in our neighborhood, Marcus has true rock star status.  But when I take Marcus out in the regular world, I feel completely vulnerable.  At the store, the library, the doctor's office, the park, I wonder where our family fits in and I wonder if Marcus is  accepted in spite of his differences.  To me, Disneyland Man symbolized the most hostile parts of this world.  The world that says "You don't belong.  You are an inconvenience.  You are weird.  You are not like everyone else, so we don't like you."

I thought about my heart's ungracious and angry response to this man and pictured how I would be in the future, when people even more hateful would cross our path.  I wondered how I would react to the bullies and mean kids at school who would make fun of Marcus and even be mean to Audrey because of her brother.  I was scared that I would be the kind of mom that would stalk those kids and show up to school with brass knuckles and ninja stars to let them know that "No one messes with my kids!!!"

That glimpse into the future scared me.  Oh, how I want the grace of Christ to take over my heart and enable me to show grace to the ungracious!  I want to encourage my husband and show my kids that with the Holy Spirit, it is possible to not fear the world, to entrust ourselves to our Father, and to extend love to those who revile us.  But oh, how my heart, left to itself, rages against my enemies!

I thought about Disneyland Man for days after and the experience weighed upon my heart, stirring many raw and violent emotions.  I dwelt on my anger and even reveled in it.  But by God's most tender and undeserved grace, He called me to remember the One who was the most misunderstood, the most hated, the most reviled man to walk this earth.  It was none other than the Creator Himself.  He stooped down to endure the greatest rejection from the world He formed with just His words.

Isaiah 53

He was despised and forsaken of men, a man of sorrows and acquainted with grief; and like one from whom men hide their face He was despised, and we did not esteem Him.  Surely our griefs He Himself bore, and our sorrows He carried; yet we ourselves esteemed Him stricken, smitten of God, and afflicted...

He was oppressed and He was afflicted, yet He did not open His mouth; Like a lamb that is led to slaughter, and like a sheep that is silent before its shearers, so He did not open His mouth.

If my Lord was misunderstood and despised, what right do I have to be accepted by the world?  Why am I afraid of being rejected by the world when Jesus endured the Ultimate Rejection (not only from the world, but from His Father) so that I don't have to?

Remembering Christ in his meekness and sorrow softens my heart and allows me to rest under the cross.  What a comfort that I have already been accepted and will be loved forever, no matter what this world thinks of me or my family.  Thinking ahead on how the One who was once the world's biggest loser will one day reign over all of creation, gives me hope.  He will restore all things and we who are the world's losers today, are also co-heirs with Him.  I cannot wait.

Until then, I beg God to keep my heart melded with Christ's on a day to day basis.  I pray that when I meet Disneyland Man again, as well as all his cousins, brothers, and offspring, that my heart would remember Christ and rest secure in His full acceptance of me.

Audrey's Thoughts On Pregnancy

Audrey first found out about the pregnancy during our first ultrasound at 7 weeks.  When she saw the beating heartbeat and finally put two and two together, she erupted in complete elation that she would have another little brother or sister.  "I'm going to tell ALL my friends!", she exclaimed.   For the rest of the day, she asked me every 5 minutes if I was feeling okay and if I had any ouchies.  And for the next few weeks, she kept the ultrasound picture in her Tinkerbell purse.

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I guess she was wondering how the baby got inside Mommy's belly, because one day she asked with a stern look of consternation, "Mommy, did you EAT the baby?"

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One day in the car, she had an epiphany.

Auj:  Mommy, you are like MARY!

Me:  Why, Auj?

Auj:  Because you are having a BABY!  (duh, Ma.)

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It's been fun thinking of baby names with her.  Here are some interesting ones she's contributed.

Girls' names:  Gabriella (High School Musical), Audrey

Boys' names:  Jesus, John the Baptist, Lightning McQueen

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She had been really hoping for a baby sister, so naturally, she was disappointed when we found out she was going to have another brother.  But after we reminded her of all her girl friends who have 2 brothers, she was encouraged.  At the end of the day, she said, "I love boys today."

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



Aaaaahhhh!



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.

How Blessed We Are!

How amazing that we can express a need, and a thousand people rally alongside us and commit to praying for us while showering us with love!  How undeserving we are of this unique way the Lord continues to take care of us!

A missionary friend from overseas sent us the most encouraging email and reminded us of this beautiful and very pertinent psalm:  (Thanks, Denny's!)

Psalm 16

Preserve me, O God, for in you I take refuge. I say to the Lord, "You are my Lord, I have no good apart from you?"

The Lord is my chosen portion and my cup; you hold my lot. The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance.

I have set the Lord always before me; Because he is at my right hand, I shall not be shaken.
Therefore my heart is glad, and my whole being rejoices, my flesh also dwells secure...

You make known to me the path of life; In your presence there is fullness of joy; at your right hand are pleasures forevermore.

Thank you, dear friends and family, for your love and prayers.  We are indeed so rich in Christ!

Fearfully And Wonderfully Made...Again

Much to our surprise, we found out a few months ago that we are expecting another baby.  As you already know, Mike and I carry the recessive gene for JS, so our children have a 25% chance of being affected with the syndrome.  Naturally, we were shocked when we found out we were pregnant because we were never going to try for another biological child.  Apparently, the Lord had other plans and now we are 12 weeks along.  The baby is due October 28, 2010.

Not only did we respond in shock, but also a huge range of other emotions which included fear, anxiety, excitement, restlessness, thankfulness, and depression.  I noticed that for myself, I had two parallel thoughts regarding this pregnancy.

My wayward response:  "God is upset with me.  He knows how much I've idolized having more healthy children.  How I've envied others who could have as many healthy children as they wanted.  So now He's giving me over to my desires and punishing me for all my wrong thoughts.  Now He's going to give us another child with disabilities to teach me a lesson and to discipline me.  If only we had gone through every precaution to never allow this to happen. It's all our fault."

My legalistic response:  "God knows how much we've gone through.  So now, since it was His idea to give us this baby, He owes me a healthy child.  I'm entitled to a healthy child since I already bear the heartache of seeing Marcus and his disabilities."

Once we started to tell our family and friends, we were so surprised at their response.  We heard things like, "What a blessing!  This child is from the Lord!  He opened your womb!  He loves you and intends for this child to be a blessing no matter the outcome!  It is His good will!"

As we heard those things more and more, we were like, "Huh? Really?  God intended for this to happen?  He intends to love us through this?"  It was so good for us to lean on what others said to help us see things clearly.  And since then, our hearts have been encouraged and comforted and He's given us peace and trust.  Oh, how we needed others to help us see what we couldn't!

However, today was another bump in the road.  I had my 1st trimester screening.  When the Perinatologist was quiet, and once he said in a low and calm voice, "Let me tell you what we've found.., " we knew there was bad news because we've heard those very words from doctors a few times before.  The baby's neck measurement, specifically the nuchal fold, was very large...off the charts, so to say.  In a nutshell, this finding indicates a 20% chance of Down's Syndrome, a 25% chance of a heart defect, and could be the very early signs of Joubert Syndrome.  He did ask us to remember the positive chances of having a healthy child and was so kind to really care for us, but our hearts sank.

In a weird way, however, we weren't surprised.  We had braced ourselves for another child with needs.  But to hear about Down's Syndrome and a heart defect were unexpected.  And to see signs of JS this early, also caught us off guard.  Mike had to go back to work after the appointment, and Audrey and I had to pick up Marcus, so all we said were firm "I love you's" to each other and then caught up together to soak it all in when we got home.

Could it be?  Could it be that God intends for us to have another child with special needs?  And maybe even have multiple diagnoses?  How will we handle it?  Is there room in our hearts for more pain?  I'm so weak.  I'm not like those supermoms out there.  I can't do it.

We don't know the outcome, and it's not our place to know.  Yet when we think back on how God has delivered us in our past trials, we see clearly that He's drowned us with His grace, where all we could do was rest, float to the top, and have Him rescue us.  I've been thinking a lot about one of Grace Mark's posts, where she talks about how she had to face her greatest fear...losing her husband, Andrew.  This quote has come to mind quite often lately:

"I was terrified of losing Andrew, because I wasn't sure if what was on the other side was survivable. It turns out Christ was on the other side. Just as the sky is blue in America and is the same sky in the rest of the world, Christ was with me before I lost Andrew and Christ is still always with me and still sufficient in all loss and no matter what may come."

Please pray for us.  Pray that we would have full confidence that Jesus will be there, even if our greatest fears come true.  Just as He's been so near to us in our special needs journey thus far.

On a thankful note, it was amazing seeing this baby again today.  We are so in love with this new life being fearfully and wonderful knit inside me and consider it a privilege to take care of him.  Marcus is going to be a big brother, and Audrey is going to have two little monkeys to wrestle with.  It's a boy.  :-)

Thankful Wednesday

I've got a head start on my list of thanks this week!

1. Marcus' yearly blood-work for his kidney and liver function turned out normal.  We are praising God!  He's got his annual abdominal ultrasound coming up in a few months, too.  After that, we don't have to worry about his kidney and liver for another year!  Another praise is that the phlebotomist who drew Marcus' blood got it on the first try, which is 100 times better than a few experiences we've had in the past.  It still took both me and Mike to pin him down, but at least it didn't take multiple pokes and the crazy wrestling match only took a few minutes.  I'm going to write down the phlebotomist's name for future reference so we can ask for her again next year:  Cherise!

2. Pastor Dan's Sunday message struck a chord with me. I'm thankful that through the Parable of the Landowner in Matthew 20, God exposed the reason why it was so hard for me to rejoice with others who had blessings that I thought I deserved more than them.  It's due to the pride and legalism that is so deep-rooted in my heart.  I came away from Sunday feeling as though God shed a spotlight on the source of my envy and bitterness that I tried to fight on my own.  I could write a ton about this, but I'll leave it at that.  :-)  I'm just thankful for the undeserved grace God has already given me.

3. My friend, Jenny Lee, gave her Gospel testimony on Sunday and I'm so thankful I got to hear it.  Mike and I have known Jenny for years and we've been in the same Bible Study group off and on for as long as we've known her.  This year, it's been our privilege to be in the same Care Group with her again because we've seen how the grace of God has taken a hold of her heart.  Every time she shares, I learn so much from her because she exudes the beauty and rest of Christ.  What joy!

4. I'm thankful that Marcus has been insisting that he walk from the car to his classroom every morning he goes to school.  I used to have to hold him and push his walker at the same time because he didn't want me to leave him.  Now, as soon as I get him out of the car, he gestures to have me put him in his walker so that he can walk all by himself.  In the hallways, all the teachers and staff and parents who pass by stop to admire his big-boy status and to cheer him on all the way to Room N.  Then, he finds his favorite puzzles, gives me a "Bye-bye," an "I love you," and a kiss, as if to say, "Later, Mom!"  I love it!!

5. I'm thankful for the chance to plant flower seeds with Audrey.  Our neighbors are ALL so good at making their patios look beautiful.  The most embarrassing thing is that our next door neighbor's front and back patio look like the re-make of the Garden of Eden.  And ours?  Uh, once we get out there a few times a year, we have to weave our way through the cobwebs and wash off all the grime that has settled on all our nasty stuff.  Our neighbors must look at our area and think that the only things we cultivate are death and spiders, because I even managed to kill our few cactus plants.  But through Audrey's persistence, we've actually kind of tidied up the place and put some flower seeds in little pots.  She's been watering them daily and I really really hope they grow!!  In the meantime, it's been neat to see her interested in this little project of ours.

6. I'm thankful that Marcus has conquered his fear of grass!  You should have seen him about a year ago.  He would do this crazy Cirque du Soleil balancing act on his butt cheeks so that no other part of his body would touch the grass.  But we realized this past Easter that he not only wasn't scared of it anymore, but he loved crawling through it!  (We hope he can overcome his fear of tents, tunnels, and parachutes soon, too.)





It probably helped that Audrey was showing him the ropes while foraging for eggs like a ravenous wolf!



BTW: Thank-you to the Children's Ministry for hosting such an awesome Easter outing for our kids!

7. I'm thankful that I caught another one of these moments between the kids.  Here they are, figuring out a new toy together.



8. I'm thankful for an email I received this week from someone who has been reading my blog for a while.  I've never met her, but I do know her husband from college and through a mutual friend, she was introduced to my blog.  She went out of her way to write  a gracious email to tell me how God brought her through a painful time in her life and somehow, God's work in our trials encouraged her during her heartbreak as well.  I was floored by this, and was overcome with thanks.  I mostly write my posts to chronicle for our family God's goodness to us.  But if ANYONE is encouraged by even a TINY bit of God's faithfulness in our lives, it is just grace upon grace.  Yet another reason to be thankful for our trials.

The Other Mom At The Park

You would think that having Marcus and all the trials that come with his special needs would completely break us and strip us of our pride.  Truth is, we've been finding more pride swell in places of our hearts we didn't know existed.  For me, I've seen more pride in myself in the area of suffering.  I've found myself thinking towards others, "You don't know my pain.  You are not familiar with this kind of heartache I have for my child.  Your trials aren't as significant as mine."  I'm embarrassed to say it, but it's true.

Audrey and I were at the park last week.  I couldn't help but notice the little boy playing next to us.  Whenever I see boys around Marcus' age, I see all they're doing and think, "His mom doesn't know what a blessing it is that her son can talk to her and run around the park having so much fun.  She doesn't know how good she has it.  Since her boy is healthy, she probably doesn't know the kind of heartache I have.  Her life is probably so free of trials."

I ended up having a conversation with this boy's mom, who happened to be sharing a bench with me.  She asked me if Audrey was my only child and so I explained to her that Marcus was in school.  I eventually got to explaining to her about Marcus' condition, which then opened up the conversation even more.

It was her turn to share with me.  She and her husband tried for 4 years to get pregnant.  After 4 trials of IVF and multiple babies lost, she finally got pregnant.  She had complications in pregnancy and had pre-term labor at 27 weeks gestation.  Her boy, Luke was born far too early and was helicoptered to the nearest children's hospital where he would be in the NICU for 70 days.  But the most devastating part was that he was born with his identical twin brother who died shortly after birth.  His name was Marcus.

I had no idea that this woman who I assumed was "pain-free", had gone through so much more than I have ever experienced myself: infertility, miscarriages, the dangers of pre-term labor, the death of her son.  Upon first seeing her, I had no clue that she carried in her heart, the pain of her own Marcus.

God was gracious to allow me the chance to peer inside another woman's heart, even for a little bit.  He kindly used this situation to humble me and to expose my pride.  I felt He was showing me that there is no merit in exalting my trials over another's.  For He sovereignly and lovingly ordains pain where He sees fit and although it is mystery to us, His purposes are higher than ours.

Thankful Thursday

1. I'm thankful that I got to hold Baby Isaac yesterday and that I get to meet Baby Lydia tomorrow.  I'm so proud of my friends who've delivered their little ones and have embraced motherhood with such beauty and grace!

2. Along with the speech therapy Marcus receives from school, we've been sending him to another clinic privately because they are certified in the PROMPT technique, which has proven to be very effective for kids with Marcus' condition.  But the past few months, it was not uncommon for me to cry during the whole commute home.  Marcus was going through a period of defiance and intense frustration during the sessions because his speech pathologist was expecting so much from him.  I felt embarrassed by Marcus' tantrums and frustrated that perhaps it was a waste of time and money for us.  However, we've come to a good groove with things the past few weeks and his therapist is ecstatic that Marcus has been more cooperative and really vocalizing more during the sessions.  I think it just took some time for Marcus to realize that he really CAN meet her expectations.  A definite blessing!

3. I'm thankful that Mike got to have lunch with a brother from church yesterday and left tremendously encouraged.  Their conversation also greatly encouraged me and made me even more thankful for all the undeserved love our family receives from our church body.

4. I'm thankful for a recent email I received from new friends we made at Faith Bible Church of South County.  They were able to really give us solid counsel in regards to how to approach Marcus' upcoming IEP as advocates for Marcus, and yet as Gospel-believers.  We're so glad we can look to them for advice in this area because they are so much wiser and godlier than us and they've walked the path of special education so much longer than we have.  Thank you, Anne & Ephraim!

5. I'm thankful that we are exploring options for a new walker for Marcus.  He's not quite ready to upgrade yet (mostly because of fear on his part), but it's neat to see where he's headed.



6. I'm thankful that Marcus used a fork to eat his breakfast this morning with minimal assistance and no frustration!  Woohoo!

Sure takes a lot of concentration



I will make this huge piece of egg fit into my mouth!



This deserves a high-five



Yep, I'm feeling pretty good about myself



7. I'm thankful for the chance to take outings and do what we do best:

Cuddling





Kissing



Being silly





Acting cool



Picking boogies



Admiring



Devouring treats



And not wasting a single lick