Wednesday, March 30, 2011

What The Kids Have Been Up To Lately

Giggling while exersaucing









Posing as lost and abandoned children

Eating feet

Getting caught


Which usually ends up like this:

Cracking up

Finding yucky potty humor on the iPod

Sharing the same sense of humor

Thursday, March 17, 2011

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"

Tuesday, March 15, 2011

What Are The Odds?

They say that there is a 1 in 100,000 chance of having a child with Joubert Syndrome.  So what are the odds that there could be another family affected with the same syndrome who lives 15 minutes away, who also share the same ethnicity and share the same faith?

When I first heard about the Kim family, Marcus was 6 months old.  Our OT at the time, mentioned that there was a pair of siblings who were diagnosed with Joubert Syndrome and went to the Blind Children's Learning Center, which was the school that provided all of Marcus' therapy.  Some people on our Joubert Syndrome online group also told me about this family, so I kept my eye out for them when we were on campus for Marcus' treatments.

The first time I saw Joshua was a very emotional experience for me.  He was with his classmates and while I was sitting with Marcus a few feet away from him, I couldn't stop staring.  It was the first time I saw another child with Marcus' diagnosis and it was as if I saw another child who belonged to me.  Only the Lord knows how I kept myself from running to him, picking him, and holding him tight against me.

I eventually got in contact with his mother and the first time we met was when Marcus less than 2 years old.  It was such a refreshment to my heart to meet someone who knew EXACTLY what I felt and what challenges we faced.  She was and still is someone I look up to so much.  She has not one, but two children affected with JS, as Joshua has an older sister who is also diagnosed.  I still remember her words when I met her for the first time.  I was still in my first 2 years of grieving over Marcus' diagnosis and here she was, with two affected children, and she said, "Sue, I don't compare my children to other typical children anymore.  I accept them as they are and I trust in God."  Those words were like a river a water to a thirsty and weary soul.

A few weeks ago, she and Joshua came for a visit and this time, I did hold him tight.

He was strutting his new walk, as he learned to walk independently this past year.  Isn't that amazing?  We are hoping Marcus will literally follow in his footsteps soon.

Marcus was much older this time around and it was a thrill to see the two of them play with each other, chase each other around, and even participate in some male bonding.

And it was an encouragement to see Jaewon again too.  She is my hero.

I always wonder, "Will Marcus have friends?  Will he have someone who will be by his side?"  It looks like he will not only have a friend, but someone with whom he can share a deep and mutual understanding.  Yet another unique and kind demonstration of God's love for us.

Thursday, March 10, 2011

Not My Usual Thankful Thursday

Today, I'm thankful for days when:

- my children are first in line to nominate me for Meanest Mommy of the Year

- my house is a dust museum

- my husband has to scavenge for matching socks in the 3 day-old hill of unfolded laundry

- I haven't budgeted for the month and we're almost half-way through

- my stack of unopened mail keeps growing

- the kids have watched 900 hours of TV straight and even Derek knows how to work the remote

- I'm complaining about the size of my house

- I have no idea how to teach and train my children

- I'm overwhelmed by the daunting role of advocating for my child's special needs in the public school system

- I wonder if my "healthy" children receive enough attention from me

- I'd rather daydream about all the things I wish I could buy rather being thankful for the riches I already have

- I'd rather do anything other than read God's Word

- I fall through on my promises to pray for others

- my heart grows even colder toward others who are lost and in need

I'm thankful for when I have nothing to show for myself and when I have nothing to offer others.  Although I love those days when I'm in sync and have it all together, I'm coming to see that when I'm only surrounded by loose ends and short-comings, it's easier to say, "My soul shall boast in the Lord."  (Psalm 34:2)

Thursday, March 3, 2011

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'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.

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