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.

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!

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.

Audrey's Thoughts on Pregnancy #2

I told Audrey that Daddy and I saw the baby again at our last appointment and that he was super active.  She got a kick out of that.

Me:  Your baby brother was kicking...

Auj: Yeah, and moving around and around...

Me:  Yeah, and twisting all over.

Auj:  He got sweaty, huh.

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Marcus LOVES to wrestle with all of us.  And just because I'm pregnant doesn't excuse me from the wrestlemania.  In fact, he enjoys the challenge of crawling over the baby bump.  We joke that when he's got me in a submission hold, the baby is saying, "Hey brother, can you please get off me?"

Apparently, Audrey had been quite concerned about this rough-housing because she asked...

Auj:  Mom, when you saw the baby in the ultrasound, was he okay?

Me:  Yeah, Auj.  He was great.

Auj:  So he wasn't squished by Marcus?

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(This one is not pregnancy-related.)

We were bathing the kids one night.  After drying them off, either Mike or I had Marcus cradled in our arms and wrapped up in a white towel.

Audrey noticed a resemblance and exclaimed, "Look!  It's Baby Jesus Marcus!"

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!

Last Few Days In Hawaii

Highlights:  (my sis is also blogging about the trip.  check it out.)

1. Seeing my daughter jump 1000 waves while screaming off the top of her lungs, and turning back to give me a "hang 10" and cheesy smile after each one.  Consequently, she crawled into bed at 5pm that night before having dinner, and conked out till the next morning.  Vacationing sure is hard work!

2. Seeing Baby Norah do a face plant on the beach and not care at all that she had on a  full-face sand mask.  Missed a pic of that one!

3. Having a night on the town with the hubby.  In true Lee fashion, we got crazy full and swollen on our all-you-can-eat crab leg date.  Then, burned it off with ping-pong and pool.

4. Taking a morning walk with the Lee boys, being drenched by a 3-minute rainstorm, and seeing a rainbow while returning to the hotel.  (Poor Audrey had been dying to see a real-life rainbow, but opted out  on that walk.  Maybe next time, Auj!)

5. Having Marcus walk between me and Mike while our holding our hands...for the first time!!!

6. Sharing our last breakfast and last supper with our parents at the same yummy restaurant by the beach.  I can't remember the last Mother's Day we were able to celebrate together in person.  SO thankful for you, Mom!!!

7. The biggest overall highlight of the trip:  spending a joyous time with my parents and seeing the kids bond with them as well.  I can't believe I held back the tears at the airport.  My heart is full of extreme thankfulness for this special, special time we had with them.

Day 5: Ala Moana Mall & Waikiki Beach At Dusk

Highlights:

1. Taking in the beautiful weather and scenery from sunrise to sunset.

2. Seeing the kids take in the aloha spirit.  They sure are happy here!

3. Working together as a family:   Mike is our chef, Ray is our valet, I am the maid, and Jane is the Butler.  And the kids...I guess they're our entertainment.

4. Taking naps...and then heading out to the beach.

5. Eating dinner at the beach, and Second Dinner after the kids go down for the night.