In His Own Words

Last week at VBS, Marcus had the privilege of sharing an abridged version of a Bible verse in front of everyone.  His was Luke 9:25 “God is better.”  Short and simple, and pretty much what we’ve been trying to share with him…that Jesus is better.

(If you’re interested, you can watch Marcus’ class presentation here and Audrey’s here.)

Today, I had to correct him for some bad-boy behavior and as I was praying with him, I couldn’t help but literally cry out to the Lord.  I clenched him tight, let my tears land on his shirt, and just begged the Lord to pour out His grace on my son.  It is the Lord who saves, not Marcus’ capacity to understand the Gospel, so I pleaded with Him to give him a saving faith in the incredible love shown through Jesus.  I felt like a baby, just begging.

Later in the evening, I put on my Wicked Stepmother outfit and yelled impatiently at the kids in the car, being especially ugly to Audrey.   I could see the poor girl whimper in the rear view mirror and I realized how harshly I’d treated her.  Normally, I would let her sulk for a while  so she would feel guilty for turning me into Meanie Mama.  (Because it’s all her fault, right?) But after a few minutes, by God’s grace, I asked her to forgive me. It went something like this:

Me: Audrey, I’m so sorry.  Please forgive me.  Mommy was so ugly, huh.  Mommy was so angry and impatient and I shouldn’t have yelled at you.  Mommy’s heart was so full of sin, wasn’t it?
Auj: (whimpering)
Me:  Why are you crying?
Auj:  Because I thought you didn’t love me anymore.  (ouch!)
Me:  (heart pretty much crumbled) Audrey, I’m so sorry. I love you SO much.  But because Mommy’s heart is sinful, my love for you is not perfect, even though I wish it could be.  Remember how we learned that God loves you no matter what you do or don’t do because of Jesus? Only God’s love for you is per…

And that’s when Marcus chimed in.
Marcus:  Jesus is better.  God is better.

It was the first time he had said those words without us prompting him to.  I’m not sure if he really understood the meaning of it in his heart, but it sure spoke to mine.  God’s’ love for my kids is better than my love for them could ever be.  I ache for my kids to know this.  Especially when they experience heartbreak and pain of their own, I want them to know that nothing can ever separate them from God’s love; a love that was proven when He hammered nails in the hands of His perfect and beloved Son so that He could carry the burden of their fallenness.  A love that calls them His own children and doesn’t change because HE doesn’t change.  A love that welcomes them with open arms no matter how much they don’t love Him back.

I’m seeing more and more how I need to cry out at the feet of Jesus for my kids (for our whole family, actually).  Even if Marcus couldn’t speak a word or if he never showed signs of “understanding”, I want to grow in faith that it is HE who saves and His grace is wide enough to cover over our little ones.

Happy Birthday, Grandpa!

It’s my dad’s birthday tomorrow.  Many of you know that both Mike’s dad and my dad are pastors and that they are both extremely musical.  My dad (and mom) majored in music and then he became a music teacher before he came to the States where he continued his musical talents and conducted many choirs at different churches.  To this day, he still uses his musical training at church and also to reach out to the community through music classes.

I thought I’d try to give my dad an appropriately musical birthday greeting from the kids to show that his musical talents have been passed down to his grandkids.  Little did I know that it would also be a chance to show him that his rascally qualities have also been bestowed on his grandson.

Happy birthday, Dad.  We love you and miss you!  Enjoy!  (And please excuse my son.)

Our Tree and Marcus’ Christmas Message

One of these years, I hope to have my dream tree.  You know, like those majestic, classy-looking ones that you see in magazines or at the mall.  But for now, I’m enjoying our plastic 3-footer decorated by our sticky-fingered 4 year-old.  It has more ornaments per square inch than any other tree I’ve seen and I love it.

Here’s a Daddy/Daughter pic with the pre-ornamented tree.

Lastly, a little Christmas greeting from the Champ.

He’s On A Roll!

Marcus’ PT has been wanting to teach him how to walk between parallel bars.  To our amazement, he just “got it” this morning.  With the crawling and now this, our hearts are full!

The biggest “wow” about this is that he learned on his own what his body needed to do to turn around and walk to the other chair.  For a kid with motor planning difficulties, this really amazed us.  He just knew what he had to do (turn around, grab the other bar, reposition his feet, etc.) and then he did it!

Now, we just need to get longer bars.  🙂

Walking Around the Neighborhood

Hi!  It’s me.  I took a long walk around the neighborhood yesterday.

Yes, I’m tall.

Yes, I got to greet Daddy home from work.

My parents were so proud of me.  And you should have seen my sister smother me with hugs and kisses.  I was dying.

Can you see how much I love this?  It’s nice to see the world from this point of view and be able to move myself around.

Yes, I’m tall.  I didn’t know it either.  I’m also handsome.  But I knew that already.

For those of you who have been to my house, let me tell you how much I walked.  I went from my front door to the parking lot and back to the bridge.  It was hard and very tiring.

But I loved it a lot.  And for some reason (which my PT could explain to you in PT language), I couldn’t stop babbling.  Walking makes me want to talk and sing.  Isn’t that interesting?

I got to see the sun shine through the trees from a new perspective.

And I looked at the flowers and dogs and neighbors who walked by.  Funny thing…the other day, one of my friends in the neighborhood saw my walker and asked his mom for one too.  He thought it was the newest John Deere toy.

I also watched the ducks playing in the water.

This is serious stuff.

So serious that I will never smile again.

Never.

Just kidding.

Wanna see how studly I am?  Excuse the soundtrack in the clip.  Mommy likes to sing my favorite songs to me while I work out because she knows it motivates me.  Daddy sings much better, but I appreciate her effort.


I felt like dancing too.  Some of you will say I get my moves from Dad.  But this is original choreography, people.  Gomo, I propose a battle with you at the next wedding.


Thank you for joining me on this journey and for praying for me.  Thank you also for encouraging my parents so much.  They appreciate it!

More Milestones

Below is Mike’s most recent Facebook update:

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Hello Friends and Family…

I just wanted to give a quick update on Marcus…

Marcus has been doing well…Really well!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

He recently started pushing himself backwards on his car too.

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

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

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

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

 

Cheerios & Singing

Watching babies do new things is so fun.  Here’s Marcus trying Cheerios for the first time.

With ice cream, Audrey will gladly do what we ask her to do in front of the camera.  Daddy Cowell & Mommy Abdul think this vocal performance is not Audrey’s best, with pitchy moments throughout.  However, they are good song choices.