Thursday, December 31, 2009

In 2009

Thinking back on this year, I've realized that many changes have happened for each member of our family.  Here are some highlights.  Note: I will focus only on the positive changes to keep this post encouraging.  :-)

In 2009, Audrey:

- stopped talking with a lisp, which is why we don't hear "printhetheth" anymore.  (translation hint:  think Cinderella, Belle, etc.)

- stopped sucking her thumb (for the most part)

- learned to read

- grew in love for her brother and became more nurturing

- realized that she's a girl and thus, likes girly things now

In 2009, Marcus:

- went from absolutely immobile to belly crawling, crawling on hands and knees, walking with a walker, pulling to stand, standing with support, and cruising

- started talking and now he has a handful of functional words, while attempting many new words on a daily basis

- learned the alphabet, shapes, colors, and numbers

- started school

Although I'm so thankful for the neat changes we've seen in our kids, I'm most blessed by the change God brought about in me and my man.

In 2009, Mike and I:

- learned the good news of the Gospel again and truly experienced it in our hearts

- were pulled from our despair, bitterness, anger, and depression, to receive hope, rest, joy, and peace

- were confronted with our idols only to learn that Jesus really is better

- were floored by God's amazing and unfailing love through His Son

I'm so grateful that the Good News of Jesus is available to us on a daily basis.  Our hearts wander so often and we are still prone to the despair that swallowed us in years past.  But this year, I see that God has tethered our hearts to His love and the security of knowing that Jesus paid it all on our behalf.

Hoping that at the end of 2010, I can say that we've grown in loving our Lord more.

Happy New Year to you all!

Sunday, December 27, 2009

Our Christmas

For some reason, the week leading up to Christmas was full of difficult news.  Not only did we face some discouragements here at home, but we also found out about the death of our friend's sister, the death of a precious boy with Joubert Syndrome whom we met this summer, as well as being burdened by hardships that different family members are going through.

Yet in a strange way, the gloom and mourning was the most appropriate backdrop to thinking about Jesus this Christmas.  Thinking about the troubles and sufferings of this life that many people endure accentuated the brightness, hope, and beauty that Christ brings to us.   What we've come away with in our home this Christmas is a greater desire to love Him more, compelled by Him loving us first.  Our hearts are full.

Mike has been on a long vacation from work, and Marcus is on a break from school and most of his therapy, so it's been a very restful time for our family as well.  Here is how we spent our Christmas week.

Wednesday, December 16, 2009

Our Mystery Man

There are so many issues that Marcus faces on a daily basis.  I'm not even talking about his vision, low muscle tone, and developmental delay.  There are just some things that make daily living hard for the little guy, and consequently, for us as well.  For the most part, he is a very happy, content, and joyful boy.  But there is 10%  to 25% of the day that is very challenging, to say the least.  I will spare you the details and just say that impatience, frustration, sensory processing difficulty, and sleep issues all come into play.  The most heartbreaking part is that he tries to cope with these the best he can, but it results in bruises, scratches on his head, and perpetually open sores on his knuckles.

All his therapists have different hypotheses on why he has these issues.  They also have some ideas on how to help him, but there are no fixed answers.  Some parents of typical boys have told me of their own struggles with their children as well.  So we know it's a mixed bag of sensory & developmental difficulties, as well as the plain fact that Marcus is a son of Adam.

As his parents, we  feel completely helpless.  It's humbling to think that I am his mom, and yet I can't figure him out and I can't help him at his most desperate times.  But God says that even in this, our boy is "fearfully and wonderfully made".  All the issues I try so desperately to seek answers to, all the google searches, all the questions I've asked to other parents have seemed to fall short.   My comfort is that his Creator knows Marcus inside and out, and for some reason, He has created Marcus with these challenges in love and for good.

I found myself holding my boy, crying out to the Lord in full-tear mode this week.  Since I can't figure him out and I for sure can't "fix" him, it's only right for me to beseech the only One who can.  And until the answers appear (if they ever do), my heart is forced to rest in His love.

Romans 8:32 He who did not spare His own Son, but delivered Him over for us all, how will He not also with Him freely give us all things?

Friday, December 11, 2009

How To Stand Up In Your Playpen - by Marcus Lee

Now that I can pull to stand, it's been fun doing it in my Pack 'n Play.  Here are some tips.  (It's best to do it only in your diaper so that the women can admire your musculature.)

First, crawl to the edge.  Try also to flash a smile to your mom because you never know when she'll take a picture.

Get your hands up onto the top ledge.  Make sure you have a firm grasp.

Pull yourself up while pushing also with your legs.  Then, look down to see how far you are from the ground.

Once you've realized you are standing, meditate.  Soak it all in because this should not be taken lightly.

After a few moments, you may then start to sing, or vocalize your emotions as you see fit.

It is also very appropriate to giggle at this time.

And don't forget to be proud of yourself and shout HOORAY!

The previous step may cause you to fall on your bottom, but that is your intent.  Repeat the whole process over and over and over again!

Thursday, December 10, 2009

How Life Was Supposed To Be

Getting married relatively young and immature, I went into marriage and parenthood with many blind spots and thus,  had very idealistic and romantic notions about how life was supposed to turn out for me.  The truth is that I thought I deserved to have everything in life that I wanted.  Of course, I knew that I had to love and follow God, but I was ALSO supposed to get everything I longed for because I was a good girl and I deserved it.  (hahahahaha!)  Suffering was supposed to be for other people because I was going to dodge all sorts of hardship.  It just wasn't going to be in my cards.

Everything was going exactly as I had planned until Marcus came along.  Needless to say, my life imploded and crashed into my gut.  My legs came out from under me because I wasn't supposed to encounter trials that big.  To be utterly honest, Marcus represents so many things that weren't supposed to be for me.

I wasn't supposed to endure such deep heartache for my child.  I wasn't supposed to face so much uncertainty about the future.  My weekly schedule wasn't supposed to work around hours and hours of therapy.  I wasn't supposed to worry about using our finances for medical/therapy expenses.  I wasn't supposed to stop having kids after two because of the possibility of having more children affected with a rare genetic syndrome.  I wasn't supposed to have my child undergo yearly tests to check for organ failure.  I wasn't supposed to expose my child to braille because of potential vision loss.  I wasn't supposed to shop for wheelchairs or walkers or have to carry my child everywhere when all his friends were running around.  I wasn't supposed to wonder if my firstborn would feel overly burdened in caring for her brother after Mike and I passed on.

God could have just kept my thoughts in this nasty pool of selfishness and pride.  But what I've begun to understand is that all the "supposed-to-be's" were really false lovers I was chasing when my One True Love was caring for me all along.  By His unmerited grace, I'm seeing that what Marcus really represents is  how deep, how wide, how strong, how lavish, how beautiful His love for me really is.  All the heartache and helplessness and despair I've felt because of Marcus were really gentle strokes of grace from God to help me see that He's already satisfied my desires through Christ.  That no other earthly joy, no matter how good, can compare to the fact that God inflicted His own perfect beloved Son so that His blood could pay the price to adopt me as His own child.  That although I've been so unfaithful while chasing false lovers, God looks upon me as He looks upon His own Son because I now belong to Him.

I still wrestle with all that I want for myself, my children, my family...on a moment by moment basis.  And to be honest, I won't be free from these idols until I'm with the Lord in Heaven.  But at the core, I am gripped by how gracious God has been to me.  That through Marcus, he has given me and my family the unique and precious privilege to be brought low, and consequently, Christ looks so much more beautiful now.  Yes, my life today isn't what I had planned or how I imagined it to be.  It is so much more rich and I am so much more aware of how fierce God's love is for me.

Monday, December 7, 2009

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.

Friday, December 4, 2009

Story of Judson

About a year after Marcus' diagnosis, God sovereignly allowed me to find the story of a boy named Judson Levasheff.  He was a healthy, sweet, intelligent, kind, loving, little boy who became gravely ill due to a genetic condition nobody knew he had.  At 2 years and a few months, he gradually began losing his motor skills, his vision, coordination, and speech, although he always maintained his brightness, his love for others, and his love for the Lord.  Only 5 months after the onset of this disease, the Lord took Judson and now it's been 2 years that his parents and younger sister have been longing for him and missing him dearly.  Yet in the face of such unimaginable heartbreak, their faith and the grace that God has given them through all of this has truly been inspiring.

I cannot adequately tell you how powerfully God used his story and his parent's testimony of suffering to encourage me at a very dark time in our own journey.  It was so good for me to witness how the Lord continued to remain good and faithful to those who have suffered horribly.  Now I can consider Christina, Jud's mom, as my friend.  Although we've never met in person, the emails we've exchanged and the updates I've read on her life have been like God's gift to encourage me.

Here's a little preview of their story here.

And you can read the full story for yourself by purchasing their newly published book here.

Tuesday, December 1, 2009

Getting Married?

Julie and Mark are getting married in a few weeks and it will be such a memorable wedding for many reasons.  Ever since 8th grade, Julie has been my spiritual older sister.  She counseled me through all my drama from junior high through college and she took a pivotal role in my salvation testimony.  Interestingly enough, she was also very close to Mike at the time and really was like his "helper" before I came along.  Julie knew when I had a crush on him and when he dug me and neither of us knew it, and so when we got married, we were so thankful for how the Lord used her in each of our lives.  Believe me, she saw us both at our best and our worst, and she was always there, praying for us and encouraging us and bearing our burdens.  And to this day, she is still a prominent source of blessing in our lives.  Her wedding will be such a huge celebration, because God has brought the perfect man to take care of her.  It will also be so sad to see her move away after SO many years together.  Bittersweet to the max!

Because she loves me and Mike so much, she ADORES our kids and so she asked if they could participate in her wedding.  It is a huge honor for us to be involved in her wedding in this way.  It will be Marcus' first time as a ring bearer and he'll be walking down the aisle (Lord-willing...please pray he goes thru with it okay!) in his walker next to his big sister.  So with Julie getting married and our boy walking down with Audrey, I'm going to be a total mess.  Boy am I going to look great with puffy eyes, and a red, stinging nose the whole day.

Mark's mom was so sweet and picked out the perfect flower girl dress for Auj, and we found a cute outfit for Marcus that will kind of match what the groomsmen will be wearing.  They tried them on today and yay...they fit!!

This dude SO thinks he's a male model.

Earlier this year, Audrey was a flower girl in Karean & David's wedding where she walked down the aisle with her bud Joshua.  Isn't he so adorable?

We found out a few months ago that Audrey thought she married Joshua when they walked down the aisle together.  Poor thing had ruled out marriage in her future because she thought she was already Mrs. Ferko!  It took us a while to convince her that she is NOT yet married, and that she CAN marry someone when she gets older.  But here's a conversation we had today that reveals we have a bit more to explain to her.

Auj:  Mom, am I going to be a flower girl in Auntie Julie's wedding?

Me:  Yeah, you are.

Auj: Am I going to walk down a long time with Marcus?

Me: Yeah.

Auj: But Mom, I don't WANT to marry Marcus!  I want to marry someone ELSE when I get older!

Me:  Really?  Who do you want to marry?

Auj: Um....Ethan?

Me:  Oh really?

Auj:  Yeah.  Mom, who do you want to marry?

Me:  Uh, Audrey, Mommy's already married to Daddy.

Auj:  No, I mean, who do you want to marry when you get older, when you become a BIG mommy?!  (uh, i hope no one ever calls me a big mommy)

Me:  I want to stay married to Daddy, Auj.

Auj:  (sighing, smiling, throwing her hands in the air) Whatever.

Apparently, Auj knew way more about marriage than me and I just didn't "get it".

Saturday, November 28, 2009


We had a wonderful Thanksgiving.  I had a good time wrestling the roast and trying to get it into the pan.  Felt like I was bathing Marcus when I was seasoning it.  :-)

Reflecting on the year and what I was thankful for, I couldn't help but think of the hard times.  For some reason, I remember those times more than the easier ones because through the heartache and tears, the Lord has revealed even greater blessing to me.  For some reason, His grace is sweeter during bitter seasons.  And Christ looks more beautiful when my own life looks ugly.

So my huge list of thanksgivings can be boiled down to this:  I am wretched, untrusting, unfaithful, and in despair, yet He saved me and continues to lavish His love on me through Jesus.  What undeserved grace!

Monday, November 23, 2009

When They're Alone

The funniest things happen when you leave your kids alone.  Here are 3 separate incidents that happened today.

1)  I left the kids to play by themselves while I did some stuff upstairs.  They seemed to be playing nicely until I heard Marcus' angry-man crying fit.  I assumed he either was frustrated at not being able to do something, or that Audrey wasn't sharing her toys with him.  Being the presumptuous mom that I am, I was ready to give a reprimand, until I heard Audrey sighing.  She had a Starbucks napkin in hand and said, "Mom, I'm trying to wipe Marcus' nose."  She was so discouraged at Marcus' reaction to her helping him that she sighed, gave me the schloppy snot napkin and said, "Mom, can YOU do it, please?"

Oh, Auj.  The snot must have been crazy because she KNOWS how much Marcus hates getting his nose wiped.  Brave soul, that girl.  Kind of reminiscent of this, no?  What would Marcus do without the Auj?

2)  After that, I brought Marcus upstairs to play while I finished my stuff.  He was exploring in his room and in our room and crawling back and forth.  There was a stack of really big books that we took off the shelves to use for trapping some wildlife that came into our house AGAIN (surprise, surprise).  Apparently, he was interested in his dad's book collection because he was quiet for a long time.  And when I went to check on him, he was intently reading one of the big books he picked out.  Move over Brown Bear and Goodnight Moon, it's Expository Preaching for our boy now!

3)  Marcus had a hard time settling down to nap today, so I went into his room and we ended up napping together while Audrey had her rest time.  After she played with her beads and read books and did who knows what else, she decided that she needed something else to do.  All of a sudden, I heard her tap Mike's drumsticks in the air and yell, "A one, a two, a three for five!"  Then she performed the loudest drum solo on every different kind of box, toy, and drum.  That was then followed by, "I AM A ROCKSTAR!!!"

She sure knows how to have fun...even if it's all by herself!

Friday, November 13, 2009

What My Kids Love

Audrey:  being outside, breathing the fresh air, feeling the sun, moving her body in the open space.  That is her happy place.




Marcus: playing music with Mom & Dad, listening to music, exploring all kinds of instruments, tapping to the beat.  He just can't get enough.




But what I hope they love more is...just being together.


Tuesday, November 10, 2009

The Sweetest Testimony

I MUST share this amazing testimony of a precious boy named Bennett Key, who also has Joubert Syndrome.  It is encouraging beyond words and now, our prayers are even more fervent for Audrey and Marcus to know our loving Savior!

Hillary, thank you SO much for finding my blog and for sharing his testimony with me.  I sent it to Mike at work today and we were both filled with so much hope that our champ will one day have a testimony like Bennett's.  Thank you!  (By the way, can I get your email?  I have so much to ask you!)

We'd like to think that Gospel seeds are being planted in our kids' hearts.  One neat thing is that Marcus has started to initiate prayer by putting his hands together before each meal.


Lest you think our son's prayers are motivated by a pious devotion to the Lord, let me tell you his true motivation:  "The faster we pray, the faster I get to eat!!"


"Lady, will you please put that camera down and pray already!?  I'm starving!!"


Uh, we got a little ways to go before Marcus has his own video testimony.  :-)

Thursday, November 5, 2009

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.  :-)

Tuesday, November 3, 2009

Newest Milestone

After 10 months of belly crawling, he's doing some big boy crawling now.  The Lord always seems to save new milestones to encourage us at just the right time.  We're so thankful for gifts like these!

Friday, October 30, 2009

What A Great Fall Festival!

Our tomboy got in touch with her feminine side for the Fall Festival this year.



And the champ had no clue why they got all dressed up.


But he warmed up to it once he saw how studly he was.



Thank you to all the volunteers who worked so hard to make sure we all had a great time.  Each year it gets better and better and now, the kids are counting down the days until they get to go again!


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