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.

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The girl is totally into it.

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

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Or how much she’s learning about the game.

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And teamwork.

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And sportsmanship.

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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.

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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.

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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.

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

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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!

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What The Kids Have Been Up To Lately

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

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Feeling unsure about sand

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Having fun anyway, since CA Grandma was there

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

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Not looking too sick to me

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Staying inside to play on the floor

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

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Crawling into the “do not enter” zone…again

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And not making eye contact due to baby guilt

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

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

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Just enjoying our everyday
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Oktoberfest!

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.

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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.

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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.

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

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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.

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I thought he was gonna try to play it too.

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

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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.

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

Good-Bye Summer

Now that Audrey’s  started school (1st grade post to come) and Marcus will soon be starting a second preschool, we’re on a new schedule with tons of Back to School things to take care of and frankly, I’m wiped out!  But before fully committing to the hustle and bustle of the Fall, I want to record how we spent the rest of our Summer.

August flew by, along with the lazy mornings, the ‘What shall we do today?’s , and me scratching my head and wondering how to occupy the kids while the baby takes his naps.  We didn’t have much going on except for Marcus’ afternoon preschool, so some days, I kind of had a “we’ll see what happens today” outlook and somehow, we kept ourselves occupied.

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Marcus was helping me wash vegetables one morning and then Audrey turned it into a bubble party.  No wonder why he loves her!  Big Sister makes everything a little more fun.

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(Insert high-pitched giggles here)

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We celebrated  California Grandma’s birthday and were stoked we could actually go out to dinner with her instead of just wishing her birthday wishes over the phone.

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CA G-ma and her favorite peeps

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If it were up to me, I would have had pizza for dinner every night so that we could enjoy more of our summer evenings outdoors.

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We didn’t get to do that as much, but we managed to squeeze in one bike-ride before the sun went down.

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I love how summer vacation meant that our neighbor friends would be home to play with.

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But if there weren’t friends around, Audrey would find something to do…like write stories in Braille for blind children.  What kind of stories did she write?  Uh, she doesn’t know.  Nobody knows.  But I hope the blind children enjoy reading them.

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Derek had fun learning to cruise and continuing on his growth curve as a giant man-baby.

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And he hopes to one day graduate from baby to playmate.

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We signed Audrey up for soccer for the first time.

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Which meant that I officially became a soccer mom.

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Her favorite part of the season’s first practice?  Scoring a goal on Daddy.

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The boys were happy to sit and watch.

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But soon just sitting and watching wouldn’t be enough.  Now I’ve got to convince Marcus that he’s not yet on the team.

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August is over and done and we’re already waist-deep in the September business of school-life.  It’s a refreshing change, but I’m glad we got to see our summer fill up with nothing and everything.

Good-bye Summer.  See you next year!

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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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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.