Look Who Was Standing Today!!!

Mr. Mark (our awesome PT who is a gift from God!) was treating Marcus this morning and it was the first time Marcus "stood" without any support in front of him.  I flipped out and grabbed the camera as fast as I could, screaming as I took the pictures.

Mommy:  Oh my goodness, oh my goodness.....aaaahhh!!!
Marcus:  Woah, woah, woah, what's going on here?  What is this guy making me do?  Am I standing?  Is this for real?  What is going on?  Hmm, this feels new. Dude, I can stand!











As I was taking these pictures, I couldn't wait to post them and share them with you all.  We are SO proud of our champ and SO thankful to our loving Lord.  Thank you so much for your prayers.  God is SO good to bless us with special moments like these, isn't He?

Just Some Recent Pictures

Our big girl


Happy boy enjoying the beach


Flying a kite with Dad


Perfecting her bowling technique


Admiring the fountain together


One last funny:

Audrey was scribbling the other day and then came to me to show off her work.  Turns out she was writing this:

AUDREYLEE.COM

Marcus Is Complete in Christ

One of Marcus' biggest challenges, along with his low tone, is his apraxia.  Basically, he has the desire and ability to do something, but his brain is not sending the right messages to his body to enable him to follow through with the action.  That's why it took him so long to learn to feed himself.  He could bring toys to his mouth to play, no problem.  But when he saw the food and had it in his hand, he couldn't bring it to his mouth because his brain didn't allow him to.  Once he "got it", he was totally able to and now, he feeds himself fine.  It's a motor planning issue.

With his speech, it's the same thing.  He babbles on his own a lot, but if I ask him to say "mama" or "baba", he can't repeat what I'm asking him to say at that moment.  I'm learning that speaking requires an incredibly detailed set of skills.  Not only do you have to position your mouth and tongue correctly, but you have to control your airflow and the way in which you allow air to pass through your vocal chords.  I know that Marcus desires badly to speak, but his brain is getting in the way! 

He has been exploring his voice a lot, however.  Along with the babbling, he's been into screaming.  You know that scene in Dumb and Dumber where Jim Carrey shows off the most annoying sound in the world?  It's that exact same sound that Marcus loves to do at home and in the car.  It's cacaphonous and piercing to the ears, but I love it and it cracks me up because he screams like crazy (and gets Audrey to join him) and then laughs like crazy.  It's hilarious and I think he does it on purpose because it makes me laugh so much.

Here is a picture of his scream.  I wish you could hear it!


The great thing right now, is that Marcus' receptive communication is awesome.  He understands everything we say to him and ask him to do.  I read with him and ask him to point to what I'm talking about and he does.  If he gets it wrong the first time, he corrects himself.  I tell him to do something and he does it.  He has also started to enjoy imitating gestures. Fortunately for him, he is able to manipulate his hands a lot better than he can his voice.  So in order to allow him to communicate basic things, we are teaching him to sign and hopefully, this will unlock some much needed communication.

Lately, he's been picking up more signs fairly quickly.  It thrills me when I see him learn new signs all by himself while watching his signing DVDs.  He learned "milk", "game" and "hat" without my help and he is SO proud of himself when he does it on cue.  When I wash him up in the bathroom, he watches himself practice his signs in the mirror and he thinks he's a stud for signing "more" and "food" and "please".

It's great to see him learn to communicate little things like that with sign.  We praise God for these little encouragements!  But when I fast forward a few years, I wonder if Marcus will be content to communicate this way.   I can only imagine the frustration he will feel when as a young man, he will try with all his might to talk, but the kids next to him won't be able to understand what he's trying to say.  I can see myself wanting so much to know what he's thinking and feeling and wondering if I'll ever be able to understand his heart completely.  I can't see myself blaming him later on if he gets angry and frustrated that he can't adequately express himself.  In fact, I'll probably be as angry on his behalf!

And to think that this is only ONE area where he'll have difficulty.  Will he be content that he'll never be able to drive?  That he won't be an all-star?  Will he be okay if he won't be able to run around like his sister does?  If he can't play the guitar like Daddy does?  Will he be okay when he begins to lose his vision?  WILL HE BE OKAY?

I want so badly to make his world "all better". As his parents, we would do anything do ensure that he'll be able to do all he wants to do in life.  But if we did shield him from disappointment and suffering, we might also rob him of the chance to learn the raw truth that he is complete in Christ.  That no matter what others say, or what the world says he needs, or what his heart longs for, that he has all he needs and more in the One who gave Himself completely for Him.  And the Bible says that the fullness of God dwells in Christ.

Colossians 2:9-10  "in Him all the fullness of Deity dwells in bodily form, and in Him you have been made COMPLETE."

I have to trust that this is true.  And our deepest prayer is that Marcus will trust that this is true. The most comforting thing is that it remains true whether we believe it or not.  Dear friends, thank you for praying for Marcus' development and his health.  Our greatest prayer is that all that he "lacks" in his life will drive him to the One in whom he has all things.

Can't wait to be able to sing this with him at church one day:

All of You is more than enough for all of me
For every thirst and every need
You satisfy me with Your love
And all I have in You
Is more than enough

"Enough" - Chris Tomlin

Marcus' New Smile

Who needs teeth, anyway?



Poor fella took a hard fall yesterday, and after the trauma of it all, he was back to smiling as usual.
Gotta love our champ!

--------------------------------------------------------------------------------------

An update on our little man and what new things he's been doing (he's 22 months now):

- Transitioning from sit-to-crawl and crawl-to-sit (belly crawling, that is)
- Pulling to stand from sitting on bench
- Signing "please" and "more" without being prompted to
- Waving "hi" and "bye" to people
- Touching the correct picture (amongst 2) when asked "Where is the ________?"
- Touching eyes, ears, and mouth when asked
- When on his belly, pushing himself up onto his hands and knees
- Blowing on a toy recorder
- Stacking one block on top of another
- Taking a few steps in his walker
- The other day during PT, he took a few steps on his own while leaning against furniture

Neat, huh?  Thanks for your prayers!!!!

His next personal goal is to beat his drums with drumsticks.  He tries SO hard, but can't just yet. But man, once he gets his hands and wrists to move like he wants them to, it's going to be very loud in here.  For now, he is content to pat all his drums all day long.  When he's not drumming, he also loves to play his mini cymbals or shake his egg-shakers and his mini tambourines and maracas.  In therapy terms, we say that it's because he enjoys the proprioceptive input he gets from banging and shaking.  I'd like to say that we have a future percussionist on hand.

One of his therapists has him do work on a light box which has a spinning wheel on it.  Sometimes we catch him spinning the wheel in such a way that looks like he's scratching vinyl.  So if he's not a percussionist, he could be a DJ.  (A son after his father's heart.)  Can we add a DJ to CBC's music team?

Shopping with the Auj

I told the kids we would be going to the market and the bank one morning.  Audrey immediately went to her desk to write a shopping/errand list.   She took the list to run our errands and when we got home, I looked at it and realized that it was indeed a true list!

Free scoop of Frostbites to the first person who deciphers this list correctly:


---------------------------------------------------------------------------

We're still learning about volume control and what's appropriate to say in public.
Case in point:

At Babies R Us -

Checking out with an older looking cashier.
Audrey:  Hey Mom!  Is her name Grandma?

At Trader Joe's -

Checking out with a cashier who had multiple piercings.
Audrey: Hey, what's that? (pointing to her face)
Cashier: What's what?
Audrey:  What's that on your lips?
---------------------------------------------------------------------------

And lastly...

Because picking her own just wasn't enough anymore:

Pho Weekend

Some kids I know had pho this weekend and kind of liked it.

The Gospel and Our Trials

Within a given day, my heart is all over the place.  At times, I'm so happy and joyful at seeing so many blessings in my life.  Other times, I feel like my heart is so heavy that I can barely breathe.  These two extremes can sometimes happen simultaneously....which is a mystery to me.

We went to the Blind Children's Learning Center today and had so much fun.  It was wonderful being with the kids, their parents, and the teachers, enjoying the beautiful weather.  Marcus ate 2 cookies by himself for the first time, and was very happy about that.  Audrey got to decorate cookies, paint an egg, and help Marcus search for beeping Easter eggs which could then be traded in for a huge bag of candy, a stuffed animal, and a picture with the scary big bunny.  I was so happy to be there with them and the other precious kids, and so thankful for the people at the center who do such special things like this for the kids and families.  But at the same time, my heart was so broken for many of the kids there with multiple disabilities, and so burdened for the parents of these children.  The BCLC is a wonderful place for us to be at, yet it's a very difficult place to be...especially if you are not used to being around kids with these kinds of disabilities.

My heart is also increasingly burdened for my fellow Joubert Syndrome family members.  We are all facing similar issues with our kids, yet the spectrum is very wide and every child is so unique.  Some families are struggling with certain things and others are struggling with different ones.  They are all very difficult issues and each time I read about them, my heart breaks a little more because I understand the emotional toll it takes for them to care for their little gifts from the Lord.

And then I look at my sweet Marcus and words can't express all that is in my heart.  It's both joy and heartache at the same time.  I grapple with fear of the unknown and the irrepressible pain in my heart that longs for him to have a blessed life here on earth despite all the hurdles and potential threats.  Yet at the same time, I am so thankful for everything that Marcus is and so honored that Mike and I get to be his parents.  He is a gift that we are SO undeserving of.

Caring for a child with disabilities can be so consuming.  Physically, emotionally, spiritually...it can be very exhausting.  I think one of the toughest parts is maintaining  joy when faced with such heartache.  This is the toughest thing that I think God has put on our plate:  to trust Him and to have joy in Him while caring for Marcus.  And yet, I don't think He's given us Marcus because He knew that Mike and I could handle it and that we could rise above these trials with inpenetrable faith.  I think He has allowed this because He knew how weaksauce we really are and that it's impossible for us to have hope and joy in Him apart from His grace in our lives.  There are some who really are strong and who really are amazingly able to get through trials like these on their own merit.  However, I don't think that's the case with us.

I remember thinking to myself after Marcus was diagnosed with RP a few months ago:  "How will I get through life?  How will I get out of bed every morning?  How will I keep from crying in front of the kids everyday?  This is impossible...I can't do this."  And by God's grace, this is when He used key people in our life to remind us of the Gospel.  And it was the sweetest thing we ever heard.  I wish I could share everything, but here are a few ways the Gospel has secured our hearts in Him in our trials...

When we're overcome by heartache for our son, God reminds us that He knows our pain.  He saw His own Son endure the most suffering any man endured.  In fact, He inflicted His own Beloved with sorrow, pain, dejection, and death so that we could be redeemed.  When I think that I won't be able to get out of bed, He reminds me that if He gave me His Son, He will also give me everything else...including joy and faith in Him.  When I wonder "why is this happening?", He reminds me that although I may not know the big picture, He loves me with a love that can never be separated from me.  And on top of that, He loves Marcus and our whole family so much more than I can imagine.  Seeing our trials in light of the cross, where my Savior died for me, reminds me that He loves me and that in Him, we have everything.  I can take all my burdens and sorrows to Him, because He loves me and cares for me.

So, I'm beginning to understand that it's not really up to me to be strong, muster up courage and joy on my own, and be Super Christian Mom.  For me, it's about coming to my loving Father, totally weak, sad, burdened, in despair, and asking Him to do it all for me because I surely can't do it on my own.

I can't wait for Pastor James to preach on this passage this Sunday:

Gal 2:20  "I have been crucified with Christ; it is NO LONGER I WHO LIVE, but Christ lives in me; and the life which I now live in the flesh I live by faith in the Son of God, who LOVED ME and GAVE HIMSELF FOR ME."

For me, it's a relief to read that I no longer live, but Christ lives in me.  It's a relief because I know I can't live this life the way I should.  I'm too weak and wicked to do it right.  It's a relief that Jesus lives in me...the perfect one, who loved me and gave Himself for me.