Tuesday, August 23, 2011

Dreams Do Come True

Whenever I ask Marcus if he had any dreams the night before, he always says, "yes" and he always says he dreams about music.  I'm not sure if he knows what dreams are, but I wouldn't be surprised if he really did dream about playing all his favorite instruments like a pro.

A couple weeks ago, we took the kids to see the Pacific Symphony perform a free outdoor concert in our city and take part in the interactive musical playground.  Needless to say, it was a dream come true for our little Mozart.

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We approached a violinist who I thought could have been David Arquette with a curly mustache.  Marcus saw David's violin and then, of course,  had to pull out his own.

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David started playing a piece for Marcus

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And Marcus thought it would sound better as a duet.

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After that, he looked around and realized that this place was THE BOMB.  I didn't get it on camera, but his knees were bouncing and the hugest toothless grin plastered his face.  In this picture, he's probably thinking, "I can't believe it.  It's just like my dreams!"  There may have even been expletives involved.  The boy was excited!

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Up next, real life, man-sized trombone.

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Look at his form on the trumpet!  You better watch your back, Wynton Marsalis!

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I think the highlight for him was playing the violin because he talked about wanting to play it again for the rest of the night.

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Meanwhile, Audrey made a tambourine craft while eyeing the 2 bounce houses she was excited to sweat in.

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Audrey's dream come true = football field-sized bounce house built on top of a trampoline, with alternating Icee and cotton candy stands inside + built-in air conditioning so that she can expel liters of sweat to her heart's content.  Either that, or to be the first 6 year-old contestant on Wipeout.

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She looks like a bizarre combination of Ramona Quimby and Mike's dad in this picture.

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BTW, all the swimming this summer made Audrey several shades darker.  She looks like the offspring of a bi-racial marriage.

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I don't know Derek well enough yet to know what his dream come true would be.

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But something tells me that baby body building might be involved.

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And snacks.

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So our summer evening out at the concert was a fun time for all of us.  We had full tummies, a camera full of captured memories, and happy kids.  I'm not sure what Marcus dreamt about that night, but I think I have an idea.

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Monday, August 22, 2011

On A Sensory High

Sensory integration.  I had never heard of it until Marcus' Joubert Syndrome diagnosis.  When I saw it mentioned on a list of problems I was told he would face, I didn't think too much of it.  I thought it would be the least of our worries compared to probable vision loss, kidney failure, and potentially not walking or talking.  Little did I know that sensory processing difficulties are one of the most debilitating, heartbreaking, and frustrating handicaps that so many with JS face.

For those of you who are unaware of what it is, let me try to explain with my limited knowledge.  Sensory integration is basically the ability to process all that a person experiences through his or her senses and make sense of it, allowing him or her to function in daily life.  Some people have likened it to an airstrip, where hundreds of planes can take off and land in one day.  When sensory processing is in sync, all the planes can come in and leave smoothly, on time, and efficiently.  When sensory processing is off, it results in utter chaos and is potentially cataclysmic.

Those with sensory processing difficulties, such as people with autism, can have seemingly unreasonable fears to certain senses.  Certain sounds, textures, touches, smells, sensations, can cause them to act out in unfavorable ways, but are usually mechanisms for them to cope with experiences that to them, are chaotic and even frightening.  Sometimes, these people can have a "system overload" without even realizing it until it's too late and then one little thing can set them off into a breakdown that can send them spiraling.

Until Marcus was about 3 years old, he had perpetual open scabs on his knuckles and behind his ears.  He slept on blood-stained sheets because he would rock on all-fours, rubbing his hands and ears on his bed, banging his head on the wall or on his crib.  It was his way of coping with his sensory issues.  On top of that, his JS made it very difficult for him to regulate his sleep, so we would be up several times at night, trying to keep him from injuring himself while he fought to get any sort of restful sleep.  During the day, we had to constantly make sure he had the right distractions so that he wouldn't thrash himself in his carseat or stroller.  Needless to say, car rides and going out were very tiring and caused much anxiety.  Things were difficult at home as well, as he would scream or rock violently if left alone for too long.  I was his security blanket, as he needed me to be with him for every single thing.  And with little sleep at night and seeing Marcus suffer so helplessly, it was an incredibly trying time.

One of the most frustrating and humbling parts of sensory processing difficulty is that there's no one sure answer to help our children.  There are different techniques such as brushing, swinging, deep joint pressure that are helpful for some.  For others, medication can help.  Some others have sought out alternative therapies or dietary supplements.  But all in all, there is no magical cure and many suffer through it continuously.  My heart is especially burdened for other JS parents whose children injure themselves or even others and are unable to adequately communicate their pains and frustrations.  I've had a tiny taste of it and it is in one of the most heart-wrenching parts of the Joubert Syndrome monster.  It makes daily life almost unbearable.  For many families, this is a daily reality and I ACHE for them.

For some reason, Marcus has tremendously improved in this area.  He is relaxed during car or stroller rides and he usually sleeps 11-12 hours at night.  He still does his self-stimulative rocking from time to time, but we know why he is doing it for the most part and can get him to stop once we address the issue.  His knuckles and ears are no longer opened up and he is an incredibly content little boy.  He still has several fears that normal boys his age don't really struggle with,  but he has been able to communicate those to us and we know what things we need to avoid with him.  However, we know this can all change tomorrow and we are already in prayer for the puberty years, since there are so many kids with JS who have horrible issues with sensory-related behavior problems during that time.

ALL THAT TO SAY...we are at a peaceful time with Marcus right now.

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I don't know why or how we got here, but we are here and it can all change tomorrow, so I am soaking it up with the utmost gratefulness.  The fact that we can spend an entire day outside having fun as a family without anyone having anxiety over Marcus being okay, and then come home to a restful night's sleep is NO SMALL MIRACLE.

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Sure, he's not walking independently yet and it's not easy getting him from Point A to Point B, but we all eventually arrive at Point B and Marcus is just fine.

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My mother-in-law asked me to today how I don't get tired carting the kids from one activity to another.  I told her I do, but when I see them enjoy themselves and I capture their smiles, it's all worth it to me.  Who knows how long this season will last?

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I do not and cannot take it for granted.

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Instagram collage inspired by Kelle Hampton of Enjoying the Small Things.

Friday, August 19, 2011

Just The Two Of Us

Our lives have definitely gotten busier with the 3rd child.  And with a full plate of work, family, church and the ever-present reality of special needs, it's not hard to lose touch or to just see my husband as the parenting partner. So I'm grateful for the chance to have been able to have a weekend getaway with Mike.  We shipped off the Monkeys and Piglet to our sisters' and CA Grandma's and some friends' and drove down to San Diego...just the two of us.



We listened to all sorts of music that Audrey would deem as "inappropriate, Mama", ate a bunch of kid-unfriendly food, and walked the streets with no diaper bag or strollers.  We missed the rascals, but what sweetness it was to be able to reconnect with my husband.  And sleeping in till 8:30 in the morning?  That was the icing, for sure.



There's something to be said for being able talk with each other when we're not totally exhausted at the end of the day.  And though it's hard to remember what our lives were like before kids,  the time alone jogged my memory a bit and it felt good to have him all to myself.





It was a beautiful weekend.  Perfect for strolling around town.





Perfect for playing some ping-pong.



And perfect for eating, eating, and eating.  Marcus saw this picture and said, "Mmmmm!"   Indeed it was, my son.  I'm glad I didn't have to share it with you.  One day, you shall have your own plate of steak and eggs with bacon and coffee.



Please indulge me over the next few pictures in capturing the memories of wonderfully tasty food.  When I'm preparing my 10,000th Dino chicken, I'd like to remember that there once was a weekend when I ate well.  Very well.  Too well.

Goat cheese and toasty bread, you were delicious.



I miss you, ceviche.  I miss you, sardines.



Come here, little fishy.  Come to mama.



Dear mussels cured in lime juice and chilis, you were divine.  We ate two orders of you.  Hope you don't mind.



My mouth is watering as I remember you, Paella with shellfish cooked in squid ink.



The kids, by the way, had the best time on their own little vacation.  Audrey went bowling, slept at Grandma's, then went to a birthday party and slept over at a friend's house, with different kinds of treats and sweets sprinkled throughout.  Marcus had so much fun at Eemo & Uncle Ray's house that when we picked him up, he told us he wanted to stay longer.  Derek also took awesome naps and slept all through the night.  I'm thinking we should go away more often!

We could have used another day or two away, but it was good to be back.  We headed straight into full parenting mode with Marcus' annual abdominal ultrasound on Monday morning (which turned out great, btw.  hooray!), Audrey's first day of Adventure Camp, getting Marcus off to school in the afternoon, several loads of laundry piled up, and a full day of errands.  As I walked out of Costco with a shopping cart full of boys and food, Marcus said, "Thank you for all the food, Mommy.  I love you."  (tear sliding down my HEART!)

I was both incredibly grateful for the weekend away with the hubs,



and so privileged to be back home with the Monkeys and Biggie Piggie.



(picture taken a few weeks ago)

Monday, August 15, 2011

What The Kids Have Been Up To This Summer

It's mid-August already and I almost want to take myself out to a nice dinner and pin a ribbon on my own shirt to congratulate myself for surviving the summer with the kids.  I've felt both "Oh my goodness, when are these kids going back to school?!" and "I never want to let my babies go!" simultaneously, many times day.

I'm terribly backlogged with my picture editing and posting, but here's part 1 of what the kids have been up to this summer:

We've been trying out underwear



Violin practicing (no, my son doesn't have 4 arms)



Observing the violin practicing





We got to enjoy a free outdoor concert.











And made good use of the grass









Audrey agreed to let me cut her hair, since it was getting a bit too long.  I searched through magazines and hired a stylist to give me some inspiration for my daughter's new 'do.  (j/k) Here's what I came up with.  This style is called "Accidental FOB".  It will be the new craze amongst 1st graders this year.



Yep, the first cut was way too short and I couldn't undo it, so now she looks like a girl whose mom may not speak English very well and may wear high heels to Disneyland.  She also is now the real-life version of Ramona Quimby.  But it's okay because she did NOT flunk her swim lessons this year!  My firstborn is swimming!



The summer has been both restful and full.



I'm thankful.


(photographer:  Marcus Lee)
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