A Kidney For Our Friend

In 2009, some dear friends at church sent us to the Joubert Syndrome conference that was held in Cincinnati that year.  Hands down, the best part of the trip was meeting all the families we had been interacting with online and meeting new ones we'd never spoken with before.

That's where we met Corben and his family.  I distinctly remember watching him walk around so adeptly in his walker and hoping that Marcus would get to do that one day.  Our families hit it off and we've been in contact ever since.



After the conference, we got a message from his mom, Elisabeth, telling us the news that his kidneys were failing.  It was devastating news and our hearts ached for them, knowing they had gone through so much already.

Well, fast forward 2.5 years and Corben (age 6) is ready for his transplant.  His dad, Johnny, will be the donor and the surgery is scheduled for November 30th...just a month away!

Can I ask for prayer on their behalf, that both Corben and Johnny will remain healthy until the surgery and that all will go well for both of them?  I can only imagine all that goes into planning for this kind of procedure and all that weighs on Elisabeth's heart as she cares for her husband and her two boys.





Can I also present to you a practical way you can be an encouragement to this family?  They are raising funds for the transplant.  If the Lord puts it on your heart to help them in this way, please visit their fundraising site to make a donation.  (Tax receipts are available.)

What's incredible is that despite the decline in his health, in the past year, Corben learned to walk independently and won "Outstanding Boy" for his class at school.  He recently even got an iPad from his school as an early Christmas present, which means he's obviously a rockstar!  Elisabeth told me that despite his low energy level and general malaise due to his low kidney function, he continues to progress.  He is amazing, his family is amazing, and in her words, "We are so blessed and I pray that I can use our struggles to glorify God."

Thanks, everyone.  Your prayers and support are gold!

What The Kids Have Been Up To Lately

Playing for 5 days straight with Costco toilet paper



Stick-collecting





Pondering life



Taking up a neighbor's offer to take a picture



Reading about fairies

Audrey always asks, "What did you read when you were young, Mama?"  I usually mumble something like, "You know, I read books like oisdflskdjfslka and woidlkjlaflakw."  It's just a little embarrassing to say that my home library was Stephen King and Christopher Pike.  So yeah, I'm glad she's reading about fairies.  Hopefully it stays that way.

Trampoline modeling





Biting more of our belongings





Religiously practicing Beethoven.  Fur Elise is his new passion.



Scoring a new job

Can I give a shout out to my husband, who I am so proud of?  He rocked his interviews and starts a new job in a few weeks.  Another shout out to the LORD, who so graciously placed this job on Mike's lap and revealed that it was time to move to a new company.

Celebrating Year 1 for Number 3, Korean style.



Correction:  celebrating CA Grandma's crazy schmazy love for her grand baby.  It was all her idea to get 100 pounds of fruit and Korean rice cakes to set up the traditional Korean 1st birthday get-up.  And she was elated seeing her lover boy all dressed up.



Just enjoying our everyday

What I Realized At The Pumpkin Patch

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It had been 4 years since our last visit, but a few days ago, we went to THE pumpkin patch.  The one we visited the day after Marcus was diagnosed.  I still don't know how we did it, but we took the kids there the day after our world crumbled and we died.

But this time, things were a bit different.

I didn't even think too much about it when we went.  I was snapping photos and just realized the significance of this time of year and of this particular location.  Then my heart swelled a bit and I just kept shooting.

Audrey probably doubled in size since the last time.



But still enjoyed herself on the toddler carrousel.



Marcus, who was no longer strapped to me in the Baby Bjorn, made his way through the pumpkins walking hand in hand with Dad.



And the Champ was so engaged, he didn't even realize he was standing on his own.



And then I looked over and saw this little one:



Had you told me 4 years ago that we'd have him in our family, I would have punched you in disbelief. Because 4 years ago, when Mike and I were told that we were carriers of Joubert Syndrome, we didn't think the Lord would allow for us to have another child. And when we were at this pumpkin patch last time, it was just Audrey and Marcus and our broken hearts.



But this time, this is what I saw through my viewfinder.

Keep your paws off my pumpkin, kid.

And then it dawned on me that Derek's birthday was in just a few days. Derek was born in October! Our Lord not only gifted us with another child, but blessed us with him during a time of year that held so much pain for us. And as we remember the jarring experience of having to submit one son into the Lord's hands, we get to celebrate the day He gifted us with another son as an act of pure grace.



Derek's 1st birthday is tomorrow. I love how God lovingly and sovereignly allowed us to have Derek at this time of year. Derek isn't only an undeserved gift, but an undeserved gift packaged beautifully and delivered at the perfect time. We love you, Derek Isaiah Lee!

Why God Gave Audrey Soccer Legs

We are more than halfway through Audrey's first season of soccer, so I thought it was about time I record how her experience has been so far.

She and her team are the Ladybugs.



The girl is totally into it.



You can't truly capture from these pictures how much she loves running on the field.



Or how much she's learning about the game.



And teamwork.



And sportsmanship.



But you also can't tell from these pictures that they've lost all 5 games.  They've made 2 goals the entire season, and have been scored on 27 times.



During the first full game of the season, I looked over at Audrey, worried that she was completely discouraged.  But right after the 900th goal the other team scored against us, she screamed, "I. LOVE.  SOCCER!"  And then I wasn't so worried.

When the Ladybugs scored their very first goal, Audrey came home and said, "That was fun!  I hope we win again!"  Mike and I looked at each other, silently exchanging, "You tell her.  No, you tell her." And then one of us broke the news that we didn't win the game.  In fact, we probably lost 12 to 1.



I wish you could have seen how the girls screamed and hugged each other after the 2nd goal one of our girls made a few weeks ago.  The parents were also jumping out of their seats, I was a little teary-eyed, and we all thought we made it to the World Cup.



But what we lack in skill, we make up for in fun.



My little Ladybug, I love how you run and then turn to ask, "Daddy, am I really fast?"  I love how your shin guards barely wrap around the soccer calves Daddy gave you.  I love how you push the girls on the other team who aren't even close to the ball, and then look at Daddy, so proud of yourself for being aggressive.  I love how you gulp down your water during breaks like you are literally dying of thirst.  I love how sticky every inch of your body gets after the first 30 seconds of each game. I love how you and Daddy get to spend so much time together on the field and how you giggled when he told you there was a soccer player named Hans Jorg Butt.  I love the soccer legs and the soccer booty you've had since birth.  I love you, Auj!

Sad

I normally don't blog when I'm sad.  I usually journal about it privately and wait till the joy creeps up again to blog about the sadness in hindsight.  But today, for some reason, I just feel like being a little more raw before you, my family, my friends, people I know but have never met, people I don't know at all.

The other day, Marcus and I were reading about Jesus healing the blind man.  I asked him if it was easy for him to see or hard for him to see like the blind man.  He said, "Hard."  Then he said, "I can't see in the dark."  For the past 6 months to a year, Marcus has been saying more that he's scared of the dark and that he can't see in low light conditions.  This isn't surprising considering his Retinitis Pigmentosa.  But we can't help but wonder if it's getting worse, or if it's that Marcus' speech is just emerging enough for him to express to us what he's been seeing or not seeing all along.

In any case, it's a rude reminder of what the doctor has told us...that Marcus' eyes have very limited function and that he will eventually lose the vision that he has.

I'm so sad.  I ache. I feel weak and burdened. My heart is weary from all that Joubert Syndrome entails and how it's affecting all the other families we know.  I wish the Lord would come right now to take us to our eternal home, where Marcus will be able to run, sing, jump, and SEE the beauty of His maker.  I long for Him to come and rescue me from this perpetual burden, to take me to where He is, so I could just lay in His arms and worship and rest.

Praying the Lord will keep me convinced of this promise:

For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

- Romans 8:38-39

My sister sent me this Charles Spurgeon devotional and I was encouraged by it:

A Child of God is not expected to be stoic, for God's grace takes away the heart of stone.  When we endure trials, we feel the pain.  Do not ask to be made hard and callous, for this is not how grace works.  Grace gives us patience and submission, not stoicism.  We feel, and we benefit by the feeling.  There are some who will not cry when God chastens, and there are some who will not yield when God strikes.  Do not be like them! Be content to have Job's suffering heart.  Feel the bitter spirit and the anguish of soul which racked that blessed patriarch.

My dear friend, when grief presses you to the dust, worship there! Remember David's words, 'Pour out your heart.' But do not stop there; finish the quotation. 'Pour out your heart before Him.' Turn your heart upside down, empty it, and let every drop run out. 'Pour out your heart before Him; God is a refuge for us' (Psalm 62:8).

When you are bowed down beneath a heavy burden of sorrow, worship and adore God there.  In full surrender to His divine will, say with Job 'Though he slay me, yet will I trust him'. This worship sweetens sorrow and takes away its sting."

Ways To Be A Blessing To A Family With Special Needs

There are many articles out there addressing what not to say and what not to do when interacting with a family who is caring for someone with special needs.  And I'm sure I could add to those lists as well.  Who knows?  I may even write a list of my own, as we've had our own share of discouraging and anger-provoking encounters with people who thought they meant well.  But today, I feel compelled to jot down ways we've felt encouraged and supported by others as we trudge through the thick, muddy and often lonely waters of special needs.

So based on our own experiences during the short 4 years along our journey, here some ways you can be an encouragement to families like ours.  I'm going to try my best to avoid "do not's", and stick to "do's".

If you are a stranger:

1. Make eye-contact and smile

It's always hurtful to receive stares, but almost as hurtful to be ignored.  It's always encouraging when others see Marcus walking in his walker and smile.

2. Initiate

Say Hi! We passed by a new neighbor on the sidewalk recently and he asked if he could touch Marcus on the shoulder and talk with him.  It wasn't creepy at all!  In fact, it warmed my heart.  One day at the pool, a mom and her son came over and they wanted to give Marcus a cookie and say hello.  That was so sweet and made me feel like we were welcome in our community.

3. Help

If you see a child acting out, screaming, awfully sick, or just having a bad day, his or her parents are probably not feeling too hot either.  I'm sure they would appreciate you opening a door, holding a bag of groceries, or picking up the apples that their son just angrily threw on the floor.

4. Ask politely

I don't want to hide my child's diagnosis from strangers, but it's not always appropriate for me to divulge the information the moment we meet.  I don't say, "Hi!  This is my daughter, Audrey.  She sweats like a wrestler and has a fear of wedgies and oatmeal."  Nor do I say, "Hi!  This is my son, Derek.  He eats furniture and likes to grab himself."  Likewise, it wouldn't be appropriate to say, "Hi!  This is Marcus.  He has cerebellar vermis hypoplasia, retinitis pigmentosa, hypotonia, ocular motor apraxia, speech delay, sensory processing difficulty and an overall diagnosis of Joubert Syndrome."

You probably should avoid, "Dude, what's wrong with your son?"  But I appreciate when new acquaintances ask about Marcus because it shows an interest in him and in our family, and gives me the opportunity to share about how wonderful he is.

5. Answer your children's questions with grace

When other kids see Marcus, they often look at him with a curious eye and ask their parents why he's using his walker.  And that is totally natural.  In fact, if I was a kid, I'd want to know too.  Sometimes I hear parents shushing their kids or replying with "uh, uh, uh."  But I have eavesdropped on some parents who have responded with grace, helping their children to see that Marcus is indeed special, but is just like any other kid who happens to need a little help getting from one place to the next.

If you are a family member or friend:

6. Listen

Sometimes parents of children with needs go through very trying times and they just need to talk out their feelings without feeling judged.  Give them a listening ear.  You'll never be able to solve their problems, but just listening to their hearts will bring comfort.

7. Cry with them


Unless you are on your own special journey, you probably won't ever be able to fully understand their heartache.  But seek to understand, try to put your heart where theirs is, and take on their burden as much as you can.  This will bless them.

8. Rejoice with them


Often, it's the littlest things that bring great encouragement and hope.  Celebrate the smallest of milestones with them because it's a big deal in their world.

9. Let them grieve for a long long time

Everyone responds to trials differently.  Don't ever put a timeline on their mourning, or judge them for crying too much or not crying enough.  (Woops!  That was a "dont"!)  It's hard enough dealing with their heartache, let alone feeling like they should be grieving the "right" way.  If you do have a concern, pray for them for a long long time and encourage them with humility and love.

10. Let them know you're praying

I can't tell you how many notes, emails, and letters we've gotten from people who've told us they'd been praying for Marcus and our family.  There have also been people who've come up to us just to let us know that they've been on their knees on our behalf.  This has been precious gold to us!

11.  Initiate practical ways to help (meals, giftcards, babysitting, etc.)

During dark times, it's very difficult to ask for help.  Not necessarily because of pride, but because there is no energy to even wave a white flag.  Here are some ways our awesome family and friends have come to our aid even without us asking:

- Setting up meals for us on days we had big doctor appointments (especially when Marcus was first diagnosed)
- Calling to ask "Hey, can we babysit for you guys this Friday night?"
- Inviting our family over for a meal, or just dropping off a meal out of the blue
- Showering us with giftcards
- Secretly gathering money to send us to a conference to meet other Joubert Syndrome families!!  (crazy!!!)
- Housing us and feeding us to comfort us after hearing very difficult news
- Offering to take Audrey out and give her a good time, knowing that siblings can often feel neglected
- Sacrificially watching our kids for several days at a time, even during a season when Marcus was agitated, extremely fussy, and not sleeping well.
- Volunteering to be Marcus' one-on-one aide to help him at church, sacrificing their own Sundays... and some of these volunteers have never even met him before!

12. Include them

I love that Marcus doesn't even walk, but was asked by our church to participate in their sports league.  I love that Marcus doesn't speak like other kids his age, but was asked to recite a verse at VBS. I love that he was able to be a ring bearer at our friend's wedding, even if meant walking down the aisle in his gait trainer, with Daddy steering it for him from behind.

13.  Encourage your children to be friendly, but don't (woops!) beat yourself up if they're not

Your children will learn from your example in how to relate with kids who are different.  If you are warm, considerate, kind, and inclusive, they will learn from you.  But if your children happen to say something insensitive, unkind, or do something flat out mean, it doesn't mean you're a failure.  We all, including our children, have sinful hearts that are still in the process of being molded to our Lord's.  Just talk with them, pray with them, and teach them that loving the Lord means loving the "least of these".

Also, don't (woops!) force your children to be friends with the children with needs.  Nobody wants a begrudging friend. On the flip side, everybody wants friends who genuinely want their friendship.  So encourage them to befriend the "different" kids, but also pray that the Lord will work in their hearts to do so with sincerity. And if that happens, this will be a HUGE blessing. Believe me on this one!

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Before having Marcus, I regret that I was entirely insensitive to people going through their journey of suffering.  I grew up saying cruel things about people who were different, being coldly insensitive to people who were undergoing trials, and selfishly withholding love from those who probably needed support.  Now I'm on the other side, and God has been so gracious.  He's allowed us to be blessed by others when I've done nothing to deserve it.

This post is very much a way for me to thank all you who've come along side us.  Even the smallest gestures have been a means of grace and God has used you to surround us with His love.

What The Kids Have Been Up To Lately

Forgetting our sand toys at home and making do with what we found in the car



Feeling unsure about sand





Having fun anyway, since CA Grandma was there



Calling a sick day on the first major rainy day of the season





Not looking too sick to me





Staying inside to play on the floor



And ending the ditch day with the Trader Joe's pumpkin bread mix that I could have eaten all by myself



Crawling into the "do not enter" zone...again



And not making eye contact due to baby guilt



Spinning Ordering us to spin the top he got from the dentist's office for hours at a time



Having the ladies take Big Poppa on a cruise around the neighborhood



Just enjoying our everyday