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!


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.



We inherited a new instrument from our church friend, Auntie Donna.  I would have never imagined we’d add this one to Marcus’ growing collection of musical toys.


But now we are proud owners of a mini-accordion.  I wish I could have caught on film his initial reaction to seeing it on Sunday.  Just imagine gigantic toothless smile, bouncing knees, high-pitched squeal, and a desperate attempt to get rid of the half-eaten beef jerky in his hand so that he could touch the keys.


On the whole ride home from church, he talked about how much he wanted to play it when he got home.  “It’s so beautiful,” he admired.  And play it when he got home he did. From 2:30pm until he went to bed, he went to town on that thing, with only two 20-minute breaks for a snack and dinner.  The kid was focused. His arms were probably sore.


But did he care?  No.  Because after his last bite of breakfast the next morning, he went at it again.


Please acknowledge that there are sound effects to these pictures. This instrument is LOUD. And not only that, since he doesn’t know how to really play it yet, it sounds like a haunted version of the Disneyland carrousel. I was on some business calls while he was playing and had to yell in order for the lady on the other line to hear me with my son’s crazy polka music bumping in the background. And I was a little scared when the drywall estimate guy came over later that day, praying that Marcus wouldn’t pick it up and decide to do a little recital for the stranger at our house. Thankfully, he didn’t and it spared me having to shout at the man so that he could hear me while Marcus was oompa-pa oompa-pa-ing in the living room.

Everyone got their turn with the new instrument.  Marcus let Audrey have a few turns and even let Derek admire it from afar.  He was very interested, hence the curled toes.


I thought he was gonna try to play it too.


But it turns out he just wanted to suck on the metal buckle while his brother moved the instrument back and forth.


And my favorite example of how this accordion is bringing our family together?  The average man will spend his Monday evenings watching football on the couch with beer in hand. Not my husband. He spent Monday night having to play the accordion for his son.


As for me, I’m gonna go to bed now and get ready for day 4 of Oktoberfest tomorrow.

Marcus Says

I wrote this post a few years ago truly not knowing if Marcus would ever learn to speak. Well, the Lord has yet again answered abundantly and now, at age 4, he is a jibber jabber machine. I never thought I would have to ask him to stop talking, but these days, I’ve even been requesting more “silent time” from him. And it makes me giddy.

Here are some of the latest speech highlights:

“I want to go to the deep dark woods tomorrow.”


Me: Marcus, why do your feet stink so much?
Marcus: (Toes in his nose) Smells like flowers.


His tone can sometimes be Godfather-esque.

Me: Marcus, what did you do at school today?
Marcus: I don’t know. You tell me.

Me: (Helping Marcus after going potty) Eeew, Marcus. Your poo-poo stinks.
Marcus: I want to smell it.
Me: No! That’s gross!
Marcus: I want to smell it!!
Then he makes me help him bend over the toilet to smell the yuckiness.

Me: (doing a silly Mommy dance)
Marcus: (giving me the hand) Stop. Stop dancing.
Me: Why?
Marcus: Because I don’t like your dancing.

Me: Marcus, eat your pizza, please.
Marcus: Use your fingers and put it in my mouth.

Now that he’s learning to talk, I guess I should teach him some manners too.


Simplicity In Suffering

This season of respite for our family has extended beyond my expectations.  I’ve been waiting for the proverbial other shoe to drop for a while now but it’s still hanging onto my toes for some reason.  Marcus has been doing really well and his contentment and progress in so many areas have been a huge encouragement to us.  Our family has reached a new normal in living with Marcus’ disabilities and although there is an eternal heaviness in our hearts, we’ve been able to breathe a lot easier.  I have a funny feeling that we’ll be looking back on these years as the golden era of parenting.  I’m supremely thankful for this time.

I can’t believe I’m saying this, but there really are sporadic moments (albeit very short ones) when I forget our dear son has a terrible syndrome.  But certain things will trigger the emotions of how we felt in the darker moments of this journey, when grief, sadness, and anxiety were close friends.  And there is a sliver of my heart that kind of misses those times.  I don’t miss the despair as much as how God used the despair to teach me and draw me close to Him.

There is a certain simplicity to suffering that I miss.  When I’m low and crushed, my life somehow gets reduced down to 3 simple things:

1. God loves me.
2. God loves my family.
3. God loves others.

Which then causes me to respond with 3 simple things:

1. I love God because He loved me first.
2. If God loves my family, I trust that He will take care of my family.
3. If God loves others, I want to pray for and care for others who are suffering.

But I realize that I often over-complicate my life needlessly.  I preoccupy myself with the unimportant and the transient things of life, being distracted by everything that life entails.   So in these seasons when I’m breathing a little easier, I want to cry out to my Lord,

Because your steadfast love is better than life, my lips will praise you.  So I will bless you as long as I live; in your name I will lift up my hands.  My soul will be satisfied as with fat and rich food, and my mouth will praise you with joyful lips, when I remember you upon my bed, and meditate on you in the watches of the night; for you have been my help, and in the shadow of your wings I will sing for joy.

Psalm 63:3-7


Preschool Rockstar

Since Marcus’ school  is on a year-round schedule, he’s already finished a month of school and so far, so great.  He’s rockin’ the new class, with the new teachers, new therapists, and new friends.  Here are the highlights so far:

*  Taking 20 independent steps in PT (crazy!).
*  Jibber-jabbering the whole way home, telling me about his day.
*  Having a half-dozen teachers, aides, administrators, therapists come up to me to tell me that he’s determined, hard-working, adorable, smart, bright, a joy to be with, cuddly, and just plain something-else.  One even told me he’s made everyone fall in love with him.  I don’t doubt it a bit.
*  Telling me what he got for his reward everyday before I can even say, “Hi”.  The dude is so proud of himself whenever I pick him up from school, you’d think he got elected class president everyday!


*  Drawing this in OT


And my favorite highlight…

*  Making real friends.

I asked him who his favorite friends at school were during his bath last night and he said, Ben.  I thought he might have just said the first name he could think of, but it turns out they are really forming a bond.  Today was Ben’s birthday and during his little party, he demanded that Marcus sit with him.  So they honored the birthday boy’s wish and pulled Marcus out of his PT session so that he could celebrate with his bud.  After school, I spoke with Ben’s mom and it turns out that Ben is talking about Marcus at home too and really likes him.  And while walking to our cars, Ben even asked her if he and Marcus could walk up the grassy hill to play together.  (Heart-melt!)  I wish I could have caught a picture of the fist bump they gave each other today!

Okay, so I cried on the way home.  This might be such a normal thing for other moms to experience, but it’s no small thing for me.  I always wondered if Marcus would be able to make friends, if other boys would have a genuine liking to him.  It turns out there’s at least one boy that does!  Oh, how I love normal!  I thanked God on our short ride home for this unique and special blessing.  Another whisper from Him to tell us, “See?  I’m taking care of you!”

So yes, Marcus is rockin’ preschool.  He’s the Bono of preschool.  Rock on!