Wednesday, February 24, 2010

Fun Family Fieldtrips

We got to take two little outings recently.

Outing #1,  Newport Beach

Audrey's mission was to collect tiny seashells to sprinkle on top of her sandcastles.  Marcus concentrated so hard on scooping sand and water that I don't think he smiled the entire time.

Auj:  Marcus, come on!  It's fun in the water!  Come on in!

Marcus:  Nah, I've got stuff to do.  Look at all this sand I have to write on.

Outing #2, the Magic Kingdom (our passes expire hoo)

What's even better than eating lunch at Disneyland?

Walking around like a stud with your dad.

What could be better for our Auj than running around the entire park?

Running around the park while eating a churro.

What could be more fun for a parent than seeing your kids enjoy the Happiest Place on Earth?

Having your child whisked off by the cast of High School Musical to participate in their song and dance.

Don't be fooled by the angry and stoic face.  You can't tell from the picture, but she is TOTALLY rocking her moves.  She looked like she was in a dance battle in an underground club.  Although her face looked like, "What am I doing here.  This is foolish and no fun.  I don't want any part of this nonsense..."

inside, she was thinking, "Dude, I've got moves that nobody else has and I'm having the time of my life!"

Wednesday, February 17, 2010

Tough Love

Here's what typically happens when I pick up Marcus from school.  When I arrive, he's usually engaged in some kind of activity.  Today, it was a puzzle.

Then, either Audrey or I say, "Maaaarcus.  We're here!"  Once he hears us, he looks up.

Then he flashes his melt-your-heart smile.

And joy overflows for the whole world.

Of course, he is happy to see familiar faces after a long day of school.  But the real reason why he gets so excited is because he is MADLY in love with me.  Mike will tell you that Marcus idolizes me, can't live without me, needs me desperately.  I am not only his caretaker and nurturer, but his security blanket and his greatest comfort.  When he's bored, he just comes to hug me and smooch me, or just put his hand on me to reassure himself that I'm there.  Ever met a mama's boy?  My son is one, that's for sure.

Don't get me wrong...I welcome all the affection and I cherish his love with all my heart.  Plus, I could probably out cuddle him.  But sometimes his dependence on me takes a toll.  The reason why he loves me so much is because I understand him.  Even though he can't adequately verbalize his wants and frustrations, I know them all.  For Marcus, I am his life translator and I can provide for him everything he can't get or accomplish for himself.  No wonder why he adores me.

But Mike and I have been thinking about how to empower him more and help him gain independence, as well as give me some Mommy time-outs.  Here are a few practical things I'm trying to consciously practice throughout the day.

1. Train him again to take naps by himself in his big boy bed (mattress on the floor).  For a while, to improve his night sleep, I was trying to keep him from napping by just resting with him, but that backfired on us.   So now, we're back to having him take naps on his own.  He was one angry boy when he realized I was going to leave him alone again, but I think he's got the idea now.

2. Make him crawl to his high chair to eat, rather than bring him to the table.  Same goes for making him crawl to his stroller when we leave the house.

3. Hold him upright to have him walk up the stairs, rather than carry him up.

4. Pretend not to understand him when he grunts for or points to something so that he is forced to use more language.  (this one is very hard because he gets so frustrated)

5. Don't let him sit on my lap if there is a safe place for him to sit next to me.

6. Let him get frustrated when he can't operate his toys rather than prematurely rescue him to avoid a tantrum.

7. Refrain from feeding him as much as possible.  Make him feed himself with his hands, even though he hates getting his fingers dirty, and even though feeding him makes meals 10 times faster.

8. Encourage him to get down from places on his own, even if he gets bruises in the process.

I know all these things sound like "Duh! That's what you should have done all along!"  but it's taking faith on my part as a mom.  The day goes by easier when I don't do all of the above.  But I know it's best for him in the long run.

One day, Marcus is going to be a man.  Yes, he'll be a man faced with unique challenges, but he'll have to be a man.  We hope that despite his limitations, he can live to be a strong, faithful, respected, responsible man.  I'm not always going to be there to help him.  Our prayer is that one day, all that he can't do on his own will drive him to the One who already took care of his greatest needs for him.  Hopefully, this belief in his loving Savior can empower him to be the strong man that we hope he'll be.

Until then, it's a little tougher love for my sweet mama's boy.

Monday, February 15, 2010

My Church's Birthday

Yesterday was Cornerstone's 11th birthday.  Fitting that it was on Valentine's Day because I'm in love with our church, it's members, it's leaders, it's pastors/elders.  CBC has truly been a means of grace to me and Mike and the kids.  I had to miss the anniversary service yesterday because Marcus' bug from last week relapsed.  But I was longing to be there and just full of gratitude for this group of people in my life who have truly encouraged and blessed our family immensely.

The greatest gift has been growing in treasuring Christ together this past year.  The Gospel makes my own Christian life so sweet, but it also makes our church family life sweet as well.

Thursday, February 11, 2010

Valentine's Flashback

An oldie but goodie.

Our Neurology Visit

Thanks to all who have been praying for Marcus regarding his body twitches and for our visit with the neurologist this past Monday.  We were able to see Dr. Joseph Gleeson in San Diego.  He is a neurologist and research scientist who has been working with families of those affected with Joubert Syndrome.  We were thankful to have had the opportunity to see him.  Besides Marcus waking with a 103.5 fever and vomiting on me in his office, it was a great visit.  Here are a few of the things we learned: (Some of the info below is medical and may be uninteresting to read, but I'm glad to be able to write it all down for future reference.)

1. His twitches are benign.

The doctor believes Marcus' body twitches are benign non-seizure muscle jerks.  Unfortunately, he does not know the cause of them, but he didn't seem to be worried about them.  We are going to schedule an EEG to test for seizures, but based on the characteristics of his twitches, he does not think they are due to abnormal brain activity.  He kind of related them to the types of twitches typical people have right before they fall asleep.  We are very grateful that the doctor wasn't concerned about this and he helped to calm our worries as well.  We're also thankful that these twitches have lessened quite a bit since first noticing them.

2. JS isn't as rare as we think.

Although Joubert Syndrome is extremely rare, he does not believe it is as rare as people think it is.  He believes that JS is highly under diagnosed and often misdiagnosed as Cerebral Palsy.  The way JS is diagnosed is through a distinctive malformation of a small part of the brain called the Cerebellar Vermis.  But often, this marker goes under the radar because the MRI is misread, or because an MRI is never ordered for a patient.  We are extremely thankful to have gotten a quick diagnosis of JS for Marcus at an early age, even though the malformation in his brain is very mild in appearance.  Since we know Marcus has JS, we are able to do yearly tests on his kidneys/liver, because some people with JS have failure in these organs.  So, having the diagnosis is a blessing.  Not to mention the added blessing of belonging to the awesome group of JS families.

3. I may have married my cousin.  (yikes!)

Marcus is affected with JS because Mike and I both carry the recessive gene for it.  And since the chances of marrying someone with the same recessive gene is so unlikely, the doctor has found that some couples have traced their family lineage and found a relation somewhere along the line.  When he asked if Mike and I were related, I felt kind of funny.  I mean, many people have always thought we looked alike, but the thought that we could be related never crossed my mind.  Who knows, we could be!

4. The genetics of JS is VERY complicated.

There isn't just ONE gene mutation that causes JS.  The researchers have discovered 10 and their still counting.  Even siblings who are both affected with JS can have it due to mutations in totally different genes and they can be on opposite sides of the spectrum in terms of severity.  We have agreed to participate in Dr. Gleeson's genetic study, so that means, Marcus, Mike and I will submit our blood samples to him.  It will be free of charge (versus the $5000 we would typically have to pay) because it is for his research.  However, we may not be notified right away if they find which of Marcus' genes is affected.  It may take years to find out.  Part of me doesn't want to find out, especially if he has the gene that causes kidney/liver failure.  But I'm glad we can help him with his research if it means helping out other families in the future.

5. Hope for Marcus' vision?

Whenever we ask Marcus' ophthalmologist if he is for sure going to lose his vision due to his Retinitis Pigmentosa, his answer is pretty much a polite "yes".  When we asked Dr. Gleeson the same question, he said, "Most likely, but maybe not."  He mentioned that there is not enough study done of JS patients through the years to give a definitive "yes" or "no".  Yes, patients with RP lose their vision, but do patients of RP due to JS lose their vision as well?  Only the Lord knows and only time will tell.  We are earnestly asking God to sustain Marcus' vision for a very long time, since his vision is helping him develop so much.

Overall, it was a positive visit.  Mike and I agreed that the best part was talking to someone who actually knew about Joubert Syndrome.  Typically, we have to educate our doctors about JS, so it was very refreshing to talk with Dr. Gleeson and have him educate us.  We are very thankful!

Thursday, February 4, 2010

Thankful Thursday

1. I'm thankful that we booked our flights to visit my parents in Hawaii this May.  Can't wait to see them!  I am already feeling the aloha spirit!

2. I'm thankful that Mike found some new music for us to enjoy via a friend at church.  We are loving Brooke Fraser's song Shadowfeet.

3. I'm thankful that Marcus' energy level has picked up this week finally.  It took him another week to be himself again after the nasty bug he had and his teachers and therapists have noticed that the real Marcus is back in action now.  Praising God for that.

4. I'm thankful that we got to meet a super encouraging family from Faith Bible Church of South County from our leader's retreat last weekend.  Thank you, Anne & Ephraim, for blessing us through the short time we had together, and for the latest email you sent.  A true encouragement from above.

5. I'm thankful for my marriage.  Despite ourselves, God has grown us and this week, we feel more keenly our love for one another.

6. I'm thankful that the final season of Lost has started. After I write this, I'm enforcing some cuddle time with the hubster while we watch the latest episode together.  Actually, it's getting late.  Maybe tomorrow night.

7. I'm thankful that our casemeeting last week with Marcus' teacher and therapists went well.  They each told us of his progress, where he stands in his development, and what his new goals are for the next few months.  He still has profound delays in his motor skills and speech, but he's made much progress.  The most encouraging part was hearing that they consider Marcus to be cognitively on track or even advanced.  I guess he even scored in the 48-month level for a few of the cognitive evaluations.  The thing is that Marcus knows he's a smartypants and gets cocky about it sometimes...that rascal.

8. I'm thankful for some of Marcus' new milestones.

Gross-motor-wise, he's crawling on all fours a lot, pulling to stand a lot, and cruising furniture.  The best part is that he's doing all these things on his own now without us having to prompt him to do it.

In terms of his speech, he's vocalizing more and uses his "words" a lot which are mostly just vowel sounds.  It gets tricky because he uses the same "word" for several things.  For example, eat, cheese, and please sound the same.  So do blue, juice, and you.  He is continuing to learn new signs (although I have to keep up with all the new signs he wants/needs to learn) and he is really using many of them spontaneously on his own now.  He does get very frustrated when he can't communicate what he wants,  but we're hopeful and prayerful that he will be able to express himself adequately when God allows.  I can't wait to hear what is on his heart!

His fine motor skills are really improving a lot.  Right now, he is really enjoying coloring with Audrey and doing puzzles.  This boy could sit and do desk stuff all day, if I let him.  Several times a day, he crawls to Audrey's little table so he can sit there with her and work on his stuff. It's neat to see.

Another thing he's been doing a lot of recently is imitating.  When he watches shows on TV, he wants to do what he sees the other kids doing.  In one episode of his favorite show "Charlie and Lola", Lola rides her bike so of course, he wants to get on his.

Then, she plays an instrument and so he asks for his recorder.

Then, she reads a book, so he orders me to  grab one for him too. (Have I told you how bossy this kid is?)

I love it all.  Seeing him grow and develop (at his own pace) has been a joy.  Each new milestone is a true encouragement from God.

9.  I'm thankful that Marcus' twitching has lessened quite a bit ever since he recovered from his illness.  He still has them, but they aren't as severe and as noticeable.  We will be seeing a neurologist on Monday to ask about them.  He is a doctor in San Diego who has done much research on the genetics of Joubert Syndrome, so it will be good to talk with him.  We aren't too sure that he'll have the answers to Marcus' issues, but we consider it a good opportunity to be connected with him.

10.  I'm most thankful this week for seeing more rotten sin in my heart.  I've found that sometimes, my selfishness and ungratefulness is so dominant in my soul, that the Gospel seems so far away.  I get mad that I can't have what I want, or I compare my lot to the seemingly easy and gratifying lives of others and I get bitter and discontent.  I ask, "Why can't I have what that person has?  Why do they get everything they want and why am I left with a gaping whole in my heart?"  I convince myself that Jesus isn't better than my earthly desires and I start to concentrate on the missing puzzle piece in my life, rather than the full riches I have in Christ.  But then I realize that all this ugliness is so good for me to see because it shows me that I've been forgiven of much more than I thought.  The more selfishness, discontentment, and ungratefulness I see in myself, the more I marvel at God's unmerited love for me....and that melts my hardened heart.  I'm thankful for that.

Psalm 73: 25,26,28

Whom have I in heaven but you? And there is nothing on earth that I desire besides you.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.

But for me it is good to be near God; I have made the Lord God my refuge, that I may tell of all your works.

Wednesday, February 3, 2010

I Love My Daughter

Audrey has been excited for school since she was in my womb.  So this fall, her dreams will come true, and Lord-willing, she'll be starting Kindergarten.  I'm excited for her and excited for me to have some free time in the mornings, but boy will it be hard to know that she will be spending 3 hours a day away from me, when for the past 4.5 years, she has spent every waking moment by my side!

She used to be this little baby (well, big baby) and now she's a little lady (well, not so little) who I can have real conversations with.  So much of my day used to be about correcting and training her and now, I find that I have to ask her for forgiveness for my own wrongdoings.  I used to be the one comforting her, but now she's doing the same for me.  For example, here is a typical conversation we have during our alone times while Marcus is at school:

Me: I love spending time with you, Auj.

Auj:  Me too, I love spending time with you too, Mom.  I miss Marcus though.  And Daddy too.  I miss the boys.

Me:  Me too, I miss the boys too.  And I'm going to miss you SO much when you start going to school, Audrey.

Auj: You'll be okay, Mommy. You'll be okay.

So I'm milking this time with her and intentionally staring at her and enjoying who she is.  I can't believe that God has uniquely created her as my daughter.  She's got some rough spots for sure, but boy is she a complete blessing to our family in so many ways!

Here are some moments I've captured during our Mommy-Daughter times.  Pictures I'll be staring at while she's enjoying herself at school.

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