Wonder Boy Update

It’s been almost 5 months since my last post on Big D.  He is now 11 months old.  He continues to amaze us.  Is it just that he’s our first typical boy and we’re not used to his boyish ways, or is he really a spectacle?  I guess I’ll never know.

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At his 9 month appointment, he weighed over 23 pounds and he currently wears size 5 diapers during the day and size 6 at night.  Is that okay?

Whenever Mike’s in the next room with Derek and I hear “WHY?!  Derek, WHY?!” I smile because I know he’s either scaling a dresser while holding onto the knobs or he’s trying to bite off a piece of furniture.  Is that what typical boys do?

What I’ve dug out of his mouth so far:  crayon, pieces of a rubber handle, wood bitten off a basket, and a piece of my index finger.  He is also very close to chewing off pieces of our leather couch.  What’s with the biting and mouthing EVERYthing?  Is that normal?

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This is how Marcus plays with blocks.

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This is how Derek plays with blocks.  First, the cigar hold.

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The blue block + cute face combo.

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The red block + crawling combo.  A definite favorite.

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The red block + TV combo.  Another favorite.

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Going in for the circle block grip.

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The circle block freestyle.  A crowd-pleaser.

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Derek,  no matter how weird you may be, no matter how heavy you are, no matter how many trips to the ER we will have, no matter how many times you grab yourself when I’m changing your diaper, no matter how hard you cry when interacting with Caucasian men, no matter how many foreign objects we’ll have to pump out of your stomach, no matter how many nails you break off from violently scratching things, I LOVE that you were meant to be in this family.

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You sure are loved, Big D, Lil’ Biggie, Big Poppa, Biggie Piggie, Baby Der!

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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

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How I Feel About 1st Grade

My firstborn went back to school last week, starting her first year of full school days, the new bigger kids’ playground, and sack lunches.

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She was stoked.

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A little nervous, but ready.

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One of her brothers thought it was pretty cool seeing her off.

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The other brother was indifferent, probably wondering why he was wearing his striped PJs in public.

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And we said our good-byes.

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The week leading up to the first day, I was sad.  Seriously considered homeschooling and doubted that this public school deal was a good decision.  Just didn’t feel ready letting her go, knowing that 1st grade would turn into 12th grade in a snap.  Stayed up in bed wondering if I’ve done a good job, if I’ve done enough, if I’ve messed her up with my sins,  if I’ve connected with her enough so that when she was tempted to grow distant in the coming years, she would remember the relationship we’ve forged during these early years and come running back.

Then I read this post and knew that for now, this is where I want my heart to be as well.

My imperfections are a reminder that I am in need of a Savior…that we all need a savior. And I have one desire…to have my attempt at parenting glow like a neon sign pointing to the One who will never let them down…

This whole parenting thing is not about me…not about how I have let them down…or built them up. And I am so thankful that I have something to offer them besides my flawed parenting skills
I can point them to Jesus..and He will never let them down…

–  Julie Martindale, Not Just An Ordinary Life

I’m praying for my dear, precious girl.  I know there are so many things I could have done better with her these first 6 years, more ways I could have invested in her soul.  But I’m so thankful that He who holds my heart holds hers as well.

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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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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!

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*  Drawing this in OT

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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!

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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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