Friday, October 30, 2009

What A Great Fall Festival!

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

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

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

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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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Two Amazing Moms

I've been following a couple of blogs written by two very amazing moms.  These two women happen to be close friends and they both live in Minnesota. They are both christian women and uniquely called by God to care for their own biological children and many more adopted children...and they each have ten!!  The most amazing thing is that many, if not the majority, of their children have some sort of disability including Asperger's,  Fetal Alcohol Syndrome, ADHD, birth defects, cognitive disabilties, and severe physical disabilities.  The stories of these families are very different, but I am equally encouraged and blown away by how God continues to enable them to trust in Him and to love the children He's given them.

I wanted to share a few posts that were particularly encouraging to me:

From Urban Servant:

Writing about when she and her husband adopted their youngest...a little boy named Jerry who had some obvious disabilities (Oct 12, 2009):

Since he isn't our first child with this type of disability we can treasure these toddler years for what they are and not grieve what they are not. There are no dreams of the 'perfect' family to shatter and no parenting paradigms to painfully shift. We are free to love and appreciate him without all of the disappointments that hidden disabilities can bring. Not that we have 'made it' as parents, but we have learned to embrace the day, the child, and the reality of our life rather than giving in to the despair of our own shattered dreams.

From: Not Just An Ordinary Life:

Writing about how parenting children with special needs has humbled her (March 1, 2009):

I remember the early days, when all I could think was "I used to be a good mom." I did alot of relying on my own skills and the pride I had in my ability to parent. Now, I am thankful for my little challenging child..because he never allows me to rely on myself and my abilities...he drives me to look to God to find the strength to parent. He has taught me so much. I know there are many moms out there who have children with mental health challenges that are thinking that they "used to be good moms" before the challenges were overtaking their lives...take heart and be encouraged. You are a good mom and you can do this. Don't define your self esteem by how your children are doing...look for your worth in some one who will never change and someone who sees you as his precious child...Your heavenly father.

Monday, October 26, 2009

Mondays with the Auj

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I am love-love-loving my alone time with Audrey while Marcus is in school twice a week.  There's a good chance that she'll be in Kindergarten at our public school next year, so I am savoring this time with her.  This is what we usually do on Mondays:

First, we say good-bye to Marcus.

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But if he's eating garlic bread, he could care less.

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Then we get some groceries.

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And Auj always asks for a balloon.

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Then we do some reading at the bookstore.

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And finally, I take off her leash and let her loose at the park.

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You think she minds that her dress is halfway up her body and the whole world can see her flower-print underwear?

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Nah, I don't think so.

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Sunday, October 25, 2009

In Other Words...

Is Tim Keller (Pastor at Redeemer, NYC) reading my blog?  Because this quote from him totally summarize what I was "trying" to say in my last post.  Perhaps I should just leave it up to the theologians to explain my heart from now on.

Identity is a complex set of layers, for we are many things. Our occupation, ethnic identity, etc., are part of who we are. But we assign different values to these components and thus Christian maturing is a process in which the most fundamental layer of our identity becomes our self-understanding as a new creature in Christ along with all our privileges in him.

- Timothy Keller

Taken from the blog: Of First Importance

Saturday, October 24, 2009

Remembering October 2007, Remembering Galatians 2:20

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I'll always remember October 2007.  It was the month Marcus was diagnosed with Joubert Syndrome.

My pregnancy with him and his labor/delivery were uneventful.  But when he wasn't visually tracking and then developed an intermittent head tremor, we knew something was wrong.  After seeing several specialists, we finally had him undergo an MRI and subsequently received the phone call that changed our lives.  At worst, we had thought he had a vision impairment.  But when the doctor told us of the diagnosis, she rattled off a list of challenges that "some - not all" children with JS face.  So, in one phone conversation, we heard terms that no parent wants to hear:  developmental delay, poor coordination, physical disability, mental retardation, vision loss, kidney failure.  In her own words, she told us to rule out a "normal" life for our precious boy.

I remember Mike and I fell asleep in each other's arms after crying and praying.  How we got out of bed the next day remains a supernatural act of God because I felt like the news we heard the night before had strangled us to the point of suffocation.  Even more miraculous is that we also went to the pumpkin patch that morning because we had already promised Audrey we would go.  So we took pictures, cheered on Audrey in the bounce house, and picked pumpkins.  Only the Lord knows how we got through it with smiles, when inside, our lungs had collapsed.  It was purely the grace of God pumping oxygen in our bodies to be able to take each breath.

Marcus was 4 months old then and at that point had very little head control.  He also had not developed his ocular motor strength/coordination at that point, so the possibility of blindness was still very real.  His future was so uncertain and hope for him was very small.  Needless to say, seeing a child in a wheelchair at the pumpkin patch made my soul drop even more.  Later on that day, Mike went for a run and came back with tears after seeing a father teach his son to play baseball.  We realized we wouldn't be able to see the world the same again anymore.

One unexpected thing for me, that I didn't expect, was how my identity would change.  Being thrown into the world of special needs, I felt like I wasn't just Marcus' mom anymore.  I was also his OT, PT, speech pathologist, psychologist,  advocate, and nurse.  I have often felt like I had to introduce myself to people as a mom of a child with special needs because it consumed my body, heart, and mind so much.  But even though October 2007 has changed our lives forever, and though we can never go back to how it was before, and even though it is such a heart-wrenching and consuming journey, it's so good to remember Galatians 2:20.

I have been crucified with Christ.  It is no longer I who live, but Christ who lives in me.  And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me.

Although often forgotten, this verse has recently been a sweet reminder to us.  Knowing that we are bought with the precious blood of Christ, and that He now owns our lives is a comfort.  Remembering that it's not about our life, but about His life in us, is a refreshing reality check.  Seeing that we don't have to live this life perfectly, but to live by faith instead, is reassuring.  That He loved us and gave Himself on our behalf so that we wouldn't have to be swallowed up by this life is a relief.

It's been 2 years since then.  Two years along in our Joubert Journey, which means we are still just running our first of many laps.  But it's amazing how much we've experienced and learned since then.  The breathing is still purely by the grace of God.  And though we often get angry we can't just breathe easily on our own like we used to, it's good to know that we need Him desperately and that He provides His grace lavishly.

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Thursday, October 22, 2009

Hannah

A precious little girl in New Zealand named Hannah (7 yrs) passed away last night.  She had Joubert Syndrome and suffered from organ failure.  They went through what every parent fears the most and spent months and months with Hannah, preparing to say good-bye.  I cannot imagine the pain.

Praying for the Reid family today, that the Lord will give them His divine comfort.

This news hits so close to home for me.  I'm gonna go hold my kids.

Tuesday, October 13, 2009

Testing Videos

Yay!  So glad I know how to upload videos on here now.





Conversations with the Kids

Last night, I put Marcus in his crib and said my customary "Goodnight".  Usually, we'll say "I love you" a few times before closing the door, but for some reason, I just stood over him and looked at him with a smile.  Then, you know what happened?  He signed "I love you" all on his own.  It was the first time he spontaneously initiated it!!!  Right then, my heart melted and oozed out of my skin.  Marcus could tell I was elated, which made him erupt with giggles too.  I think he was proud of himself for making me gush like that.

I then left the room, but realized that I forgot to turn on his heater.  So I reopened the door and went inside to turn it on.  I peered over him again and you know what he did next?  He raised his arm and made a fist to do a fist tap with me.  Ha ha!  This was the newest manly thing he learned from Daddy and he was proud to initiate me into the boys' club.

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Mike and I often wonder what Audrey thinks about Marcus' disabilities.  Growing up with Marcus and all his therapies is normal for her because it's all she knows, but we are curious to know how she views it all and if she notices that Marcus is different from his peers.

I got some pillow-talk time with her tonight and she was rambling on and on about anything and everything.  And then she said...

Auj: When I get bigger, how 'bout I can go to the library all by myself?  And get a big bag and put books in it?
Me:  Sure, that's a great idea!
Auj: And I can take Marcus too.  And he can hold my hand and walk and talk too.
Me:  Walk and talk?  That would be great if Marcus could walk and talk, huh.
Auj:  Yeah.
Me:  Audrey, how come Marcus doesn't walk and talk right now?
Auj:  Some kids can't walk and talk but some kids can...like William and Lauryn's sisters Rachel and Olivia.
Me:  Do you think Marcus will walk and talk some day?
Auj:  Mom, remember when Marcus was standing by himself next to the wall?  And we took pictures of him?  And he didn't fall and bonk himself and cry?
Me:  I do remember. (I felt like she was telling me, "Mom, don't worry.  Remember how Marcus can stand by the wall now?  Just trust in God for Marcus to walk because He will make it happen!"  Wow, that rebuked me.)

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After receiving a consequence for being disrespectful and disbodient to Daddy, this is what Audrey said:

Auj:  It's so hard to obey,  (sigh)  I need Jesus.

Amen, sister.  I'm right there with you. 

Monday, October 12, 2009

Testing Testing

I'm trying out new blogs to use.

Okay, will this one work?

What do pictures look like on here?


Sunday, October 11, 2009

Starting new?

Testing out WordPress to see if I should switch from Xanga.

Hmm...we shall see.

What do pictures look like on here?

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Saturday, October 10, 2009

Pumpkin Patch

We went to Tanaka Farms with our church's children's ministry group today.  Thanks to the staff and to the Tadokoros for organizing this fun and memorable trip!

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Walking along the patch with Daddy


Pumpkins are cool!


Enjoying the wagon ride


Petting the animals (while Mommy is paranoid about all the animal germs)


Sitting on giant pumpkins


Playing games


Enjoying refreshments


Picking our own pumpkins


Striking a pose in the patch


It was lots of fun and we all enjoyed it.  Looking forward to carving!

This picture is unrelated, but I thought I'd share what Marcus looks like when he's annoyed with Mommy.  We tell him "I love you" a million and nine times a day and ask him to either say it or sign it back.  This is the million and ninth time I asked him to say it yesterday and here's how he responded:



Hey, I'll take it.  Even if he's annoyed.

Thursday, October 8, 2009

Pictures of the Day

Marcus had a PT session this morning and he did some standing against a wall.  What happened to our baby boy?  Take a look at our champ now.  Isn't he a stud? (Excuse the following 1 million pictures...I just can't get enough of this stuff! )










And here's my ultimate favorite: our big boy with his big sis.

Tuesday, October 6, 2009

Visit from Grandparents

My parents came to visit last week, since my sister had her baby...sweet Norah.


Of course, they fell in love with her right away.



I can't believe my parents have 3 grandkids now.


This visit was particularly special because we hadn't seen them for a year and a half.  The last time they came, Audrey was 2.5 yrs old and Marcus was only 9 months old.  I was so excited for my parents to see the kids again.  This time, they came to play with a 4 year-old little lady and a 2 year-old little monkey.


Marcus bonded so quickly with Grandpa.


And they both had a blast hanging out with Grandma at Disneyland.



They also got to sit in on one of Marcus' PT sessions.  Seeing how far Marcus has come since they last saw him really encouraged them.  And that encouraged me tremendously.  I really feel that it's through our parents' faithful prayers that our kids are so blessed.


It was special watching the kids interact with my parents.


And spending time with my sister and mom together made me think of years ago, when we both depended on her for everything.


It was real hard saying good-bye to my mom.  Sometimes I still can't believe that I'm a mom now and that I'm living my own life independent from her.  When I said good-bye, I remembered how I felt when I was young.  That if ever I had a problem or fear, everything would be okay because Mom and Dad would be there to take care of it all.  They could deal with it for me and assure me that everything would be okay.  So this time, it was hard to leave my mom because it was a stark reminder that I wasn't a kid anymore and that they weren't there to shield me from my fears and trials.

Right now, there are definitely fears and difficulties in my life that I wish I could hand over to my parents to take care of.  But one of the biggest undeserved blessings the Lord has given me is my parents' and Mike's parents' faith and love for the Lord.  Although they aren't always here to hold our hands, they are fervently praying for us and for our kids, and that is one of the biggest encouragements in the face of our trials.

So I'm accepting the fact that I'm a "big girl" now, living the "real life" no longer as my Mom and Dad's little girl.  But the greatest thing my parents have passed down to me is the example of calling on my Heavenly Father to take care of me and assure me that everything will be okay as long as I am in His hands.
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