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Archive - July, 2011

Expectations

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Emily and I have been married for 10 years as of June 30 this year, and I have learned a lot in that period of time.  Being married and having children has exposed the sin in my life of having expectations that don’t come from a place of full surrender to God’s plan.  Let me share a story that highlights this point in a very big way.  In November of 2005, Emily and I were blessed to have our first daughter, Ella.  In our minds, everything about Ella met our expectations.  She was an objectively beautiful baby girl.  She met milestones ahead of her peer group.  She was walking in just over 10 months.  She was very verbal.  She had a fun personality.  She was what we thought a baby girl should be.  She was our Ella.

Ella was certainly a blessing

So, we thought we should go for a second child.  After all, WE could put out high quality offspring.  Well, this is where our expectations began to be checked and pride began to be broken.  God was going to put our expectations to death and replace them with something so much better.  It took longer for Emily to get pregnant with Seth.  After a blood-test and subsequent ultrasounds, we found that our little Seth had about a 1 in 8 chance of having Down syndrome.  For those of you who aren’t familiar with Down syndrome, or Trisomy 21 in this case, it is a genetic condition in which a person has 47 chromosomes instead of the usual 46.  Trisomy 21 occurs when there is an extra copy of the 21st chromosome.  Most of the time Down syndrome is not inherited, but is rather a “random event”.

So, to continue with the story, we chose not to have additional testing, which would allow us to have 99% certainty regarding our son’s genetic condition because there was a small chance of terminating the pregnancy by doing this test.  As you can imagine, there was plenty of stress and uncertainty over the next four months after the ultrasound and plenty of faith building opportunities.  Finally, on May 1st, Seth was born, and he did indeed have Down syndrome.  We weren’t prepared totally for this reality.  We had talked to plenty of folks who had “false positives” during their pregnancies.  This is where I had to deal with my own lack of faith.  I had built up a set of expectations in my mind that weren’t unusual for dad with his first son, but they weren’t fully rooted in God’s purposes.  You see God’s ultimate purpose is to bring Himself glory.  If His ultimate purpose was anything else, He wouldn’t be God.  Here’s where I hadn’t truly conformed my expectations to God’s as it related to Seth.  I had prayed that God would use Seth’s life for His glory, but in the back of my head I had an expectation that Seth would succeed in sports, be a persuasive leader of people, or make it big in the business world.  Honestly, I felt like I deserved to have the ideal.

The reality is that Seth might excel in sports, but in a different context.  Seth still might be a persuasive leader of people but in a unique and different way and certainly not the way I was thinking.  The point is that Seth will have physical and cognitive challenges that my expected child did not.  We have seen God’s purpose in giving us Seth.  God has used him powerfully as a testimony of His grace and mercy.  And, He has done it through Seth in a glorious way that would have never happened through any other child.  You see God’s plan and expectations for Seth were SO much better and SO much more God glorifying than our expectations for a boy that never existed.  I am so thankful for Seth and so thankful that God is teaching me to trust in His plan.

I wouldn't trade Kyle or Seth for any other.

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Lovely, Love My Family

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I’m sure a whole host of readers of the Fun House blog have children who watch Yo Gabba Gabba.  Well, there’s one particular song that really caught Seth’s interest.  It’s the “Lovely, Love My Family” song.  One time right before we ate, Emily and I grabbed Seth’s hands at the table and sang the song just for a laugh while we swayed back and forth.  What we did on a whim has now turned into a tradition anytime more than two people other than Seth sit down at the table.  In this video, Ella was our videographer and mom and dad played along with Seth.  He absolutely loves it, and we think it’s a pretty great thing to love.  We certainly do love our family.

Seth loves his family!

A few of Seth’s other favorite songs right now include (primarily because he and his big sister love to dance to them):

The second part of the video demonstrates Kyle’s intense love for bread products.  One of his favorite things to do right now is just gnaw on a bagel.  In this particular case, he is offered a piece of pizza crust.  You’ll notice he puts his hands up in front of his face and begins to anxiously wiggle his fingers in excited anticipation.  He then takes great pleasure in the savory treat, until….. I won’t ruin the rest.  Let’s just say it’s a little sad, but EXTRA funny!

Emily and I are certain that he’s taken to table food faster than either Seth or Ella did.  You can tell he’s a pretty good eater.  He’s almost five pounds heavier than Ella at the same age.  At our nine month check-up for Kyle, the pediatrician wanted to weigh him a second time because of how much he had gained since his last check-up.

So we want to know: What are your kids’ favorite songs right now?

 

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Seth’s pool jump

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Seth surprised us here at the Fun House a few days ago when he started jumping head first into the pool.  He had done it a few times before from the steps, but now he will do it from the side of the pool as well.  Up until then, he had wanted to stay around the steps in his “puddle jumper” life jacket.  I guess this video shows that if our Seth spends enough time in the pool, the uncertainty will eventually wane and the fun will begin!  As part of this diving in bit, he is willingly allowing his head to be submerged, which causes him to come up with a huge grin on his face and his hands firmly placed over his ears because he feels the water moving around in them.  Emily and I can’t wait for him to learn how to swim.  Let’s just say our first attempt with swimming lessons was about as successful as our first attempt at potty training.  We’re not sure whether we can blame that on Seth having Down Syndrome or that we generally are gifted with hard-headed children.

Ella is almost as stubborn as Seth in that we have to cajole or coerce her to do “big arms” when she swims.  She tells us that she’d rather have her arms by her side when she swims.  We think she could be a really good swimmer because she’ll be so long and lean.  Also, Ella tries to negotiate EVERYTHING.  If we ask her to eat her vegetables, she’ll immediately try to lock us in on a “number of bites” minimum.  You’ll also see that Emily and I took Kyle to his nine month check up.  He was a healthy 21 pounds.  They had to weigh him twice because they couldn’t believe how much weight he he had gained since the last check up.  We hope you enjoyed the video.

He's ready for a dip and she's working the pink goggles

Questions for discussion:

1. How long did it take your child with special needs or Down Syndrome to learn how to swim?

2. Do your children negotiate as much as our 5 year old?

3. Are there any really cool pool toys that your kids enjoy that we should look into?

 

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July Fun

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In this video, you’ll see that the Fun House has experienced a lot of firsts in July.  Ella’s gotten tall enough that she can now jump and reach the handle and slide across the zipline-like playground apparatus (no idea what it’s called).  Seth is showing off his much improved throwing form.  That video was from the July 4th weekend that we spend in Tyler with my family.  The fun all happened at my brother’s home.  We were also joined there by our friends Rick, Abbie, and Noah from Noah’s Dad blog.

The kids hope you enjoy the video

Kyle now has the role of baby Jesus in the manger scene.  Seth plays a loving dad in Joseph trying to shush the baby while Ella, in her typically dramatic fashion, is mother Mary.  Seth was insistent on putting the blanket across the crib to cover Kyle’s face.  I guess he was worried about the germs in the “stable”.  Kyle’s laugh and shriek is a big hit around here right now and is evident once again in this video.  Seth and Kyle are learning to get along in their own way.  It’s a somewhat physically taxing relationship for the both of them as you can see.  Seth continues to enjoy each opportunity he has to let loose and dance with Ella.  You’ll see in this video that he has a tendency to close his eyes while he’s dancing around, which makes Emily and me nervous.

Finally, on the physical development front, Seth was able to go all the way up the tall bouncy house stairs and slide down,all on his own, at the inflatable zone.  We were extra excited about that!  Kids with Down Syndrome are challenged with low tone, or hypotonia, which causes them to take longer to reach gross motor, fine motor, and speech milestones.  So, we really celebrate when he shows off like this.  We hope you enjoy the video.  Let us know in the comments what new milestones your child reached that your family is celebrating.  We’d love to celebrate with you!

 

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Typical Threes….

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Ahhhh, the joys of children.  Much particular “joy” with three-year-olds it seems.  Whoever coined the phrase “terrible twos” must not have endured the crafty and mischievious mind of a three-year-old.  And why should a child with Down Syndrome be any different?  I’ll be the first to say that Seth’s latest stunts as a blossoming 38-month-old are nothing more than typically developing….So I give you a few of his best moves, from Seth’s perspective:

I've got some really good tricks up my sleeve

The Grab and Go

I have a growing vocabulary (both words and signs) and some of the ones that my mom started to teach me long before I started talking were “share,” “your turn,” “my turn,” “please,” and “thank you.”  But with a slick move like The Grab and Go, words or signs will only slow you down.  Here’s how it works:  Simply sneak up behind your victim, whether its a self-defending sister or an innocent little brother, and take whatever it is that seems to be captivating their attention.  Then, just go, go, go!  Get the heck out of dodge with your new, fast feet!  Run to another part of the house as fast as possible, play with the object for about 30 seconds, then casually discard the item unless you see the self-defending sister chasing and shrieking behind you!  If that’s the case, start shouting “no” and prepare to hit her with the object until the Fun House referee comes in to break up the “misunderstanding” (right?).  At that point, fall to the ground in a heap of tears, as though you have been wronged by the other party.  Tip:  Good luck convincing the Fun House referee you are innocent.  Just try to shed as many tears as possible.  It helps if you stick out your bottom lip, point harshly at the other party and say, “Mama, Mama!” over and over again. Continue Reading…

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GQ and Down Syndrome

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In a recent article in GQ magazine a certain writer demonstrated a stunning level of ignorance when he wrote:

Boston is like America’s Bad-Taste Storm Sewer: all the worst fashion ideas from across the country flow there, stagnate and putrefy.  Due to so much local in-breeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything.

A furrowed brow for GQ

Continue Reading…

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Potty Training Boot Camp Has Begun!

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Today I earned a huge salary….or at least those new appliances Joel bought me for our 10th wedding anniversary.  Potty training boot camp started this past weekend for Seth and let me tell you, this kid is a doozy!  I’ve got my work cut out for me!

If only he smiled EVERY time....

In just a few short days, he’s learned that M&M’s aren’t worth his time to “park it” on the potty chair for a few minutes.  And for that matter, neither are Skittles, raisins, Craisins, chocolate chip cookies, pretzels, Godfish, Kool-Aid (oh yeah!), Chee-tos or ANYTHING ELSE in my fridge or pantry.  He’s done with books, Imagination Movers and even Seth’s favorite Buzz Lightyear action figure was thrown from the bathroom after he demonstrated his best toileting skills to the onlooking three-year-old.  Oh, but Seth CAN do it.  He’s done it already, lots of times.  He just doesn’t want to, and I’m struggling between feeling like I should strongly encourage him to do it and just keeping things light and fun.

So, today I took the light and fun approach.

And tomorrow I’ll be going back to the strongly encouraging approach.

I know what you’re thinking and what you want to say (and probably will say) to me, “It’s on HIS time.  He’ll do it when he’s ready.  Don’t push him.  Don’t make him do something he doesn’t want to do.”  And while I partly agree with you on that thought, I’ll argue that I bet you haven’t potty trained a child with Down Syndrome. Continue Reading…

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Basketball Fun for Everyone

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We do a lot of random stuff at the Fun House to entertain ourselves and the kids.  This day, we decided to roll the basketball around to each other inside the house.  With the sweltering heat in the summer, no one wants to be outside unless it’s in a pool somewhere.  This video is particularly enjoyable because it shows Kyle squealing with joy at the sight of Ella and Seth playing with the ball.  While we are at it, is that Kyle not the cutest little guy you have ever laid eyes on?

Kyle is such a good baby

 

Emily and I have decided that he’s an obvious tenor as you can hear in this video with the squeals he lets out.  Emily and I can’t get enough of him.  He is soooo easy going, which is such a blessing.  I told Emily that if all babies were like him, the world would truly be overpopulated.

By the way, it’s not coincidental that the kids are using a basketball as I’m a basketball junkie myself.  My goal is to get to the point where Emily HAS to learn and understand basketball because her kids love it so much.  In our earlier years of marriage, I used to bribe her to watch a sporting event on TV with me.  Even with bribes, she rarely had the desire to sit through a single half, much less the full game.  So, it is one of my goals to make the TV programming at the Fun House dominated with sports, and my methods of brainwashing my children to this end will be innumerable.  You should also check out Seth’s ballin’ video as well as Ella’s hit off the tee.  The Fun House WILL be a house of sports.  It already is and will always be a house of music and singing.  But, why shouldn’t it be both.  Who’s with me?
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ABC- Anniversary, Broadmoor, Colorado

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June 30th marked our 10th anniversary this year and earlier in the spring, Joel suggested that we plan a trip to Vegas.  I was very excited at the possibility because my all-time favorite, Celine Dion, was coming back this summer to start a new show and I wanted to see it.  Then, Joel called me one day to say that he’d been awarded a trip to Colorado through his company…all play, no work, all expenses paid.  Do you see where I’m going with this????

What a spectacular place!

SO!  Joel and I were fortunate to celebrate our 10th anniversary this past week in Colorado Springs at the Broadmoor.  All I can say is “WOW!”  Everything about the trip was over-the-top, starting with a generous babysitting venture from Mimi and Poppa…just a couple of our favorites around here.  The kids loved every minute of their time with grandparents since they don’t see them very often, and Joel and I were able to relax and enjoy the trip without worry.

Tuesday morning, Joel and I hit the Arkansas River with several other excited first-time-river-rafters.  Once I was melted and poured in to my wet suit, booties, life jacket and helmet, we loaded a bus and drove up the road several miles to the “put in” spot.  During the drive, the guide began talking to us about survival skills, should one of us fall out of the raft. “Grab the OS line, keep your nose and toes out of the water at all times, the red and yellow rope is your last hope, swim to the bank for safety and stay in one spot until someone comes to find you, etc.”  I’ve gotta be honest, I started to get a little anxious and made Joel swear to save me at all costs!  BUT, once we hit the first set of rapids and were told to “LEAN IN!” by our guide, I was sold.  That was, by far, the most fun thing I’ve ever done in my life.  Joel and I jumped out of the raft and swam a little bit (in 45 degree water) toward the end of the journey and we laughed about it the whole way home.

We looked goofy, but we had a blast

Wednesday we headed off to the Garden of the Gods and hiked through red rocks and pine trees with a picnic lunch amidst some friendly chipmunks.  Once we got back to the hotel, we spent some much needed R&R time at the resort spa and then headed downtown for a fine steak and lobster dinner.  It was an amazing, extravagant time that we truly loved. Several people asked if we had children and we gushed about our three little darlings at home….yes, we were those people.  It didn’t take much for us to flash their photos and talk about how much we missed them.

Taking in God's creation

The best thing about our trip was a renewed bond of friendship that can easily be missed with dinner, discipline, diapers and dirty clothes.  It was our first time out of state together, without children, in more than 5 years!  We talked and laughed and had SO MUCH FUN.  I must have told Joel a hundred times, “Now I remember why I fell in love with you!”

As a matter of fact, I like him a whole lot too.

Praising God for 10 years~  Emily

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Vacation now, potty training to come

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Seth and Emily will be starting potty training bootcamp when we get back from our wonderful trip in Colorado. Start praying now!!!

We need your prayers

Here is a shot I took with a cool app on my iPhone called Pano. It allows you to stitch multiple pictures together to create a panorama. We are staying at the Broadmoor. Emily has decided she likes the treatment.

This place is amazing

Joel

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