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Video: Ella turns six years old

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Our beautiful Ella had her six year birthday party. We are so proud of the girl she is and excited about what God will do through her. Ella is a natural leader and has the charm to go with it. My prayer is that she would use those considerable talents to glorify our Lord and Savior Jesus Christ. She loves her brothers and is a great friend to our son Seth. We were recently overjoyed to hear that, as a kindergartner, Ella seeks out other children with Down Syndrome and befriends them out on the playground. She knows how special Seth is and how other kids sometimes don’t know how to play with kids with DS because of their communication challenges. What a joy it is to see her already have a sensitivity to this at such an early age. What a great example it will be to her friends. Emily is due to to write up an ode to Ella and Kyle. In the meantime, enjoy the video!

 

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Video Blog: Seth goes to preschool

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After Seth’s 3.5 week bout with various types of illness, he was finally able to go to his preschool, albeit a week removed from when the other kids began. Nonetheless, it is a milestone worth celebrating at the Fun House. The video starts with Ella showing off at the pool again. She’s seen daddy do a flip into the water before. With NO HELP OR PRODDING FROM HER DAD, she has started doing this as well. I think it’s pretty cool, while I’m sure the grandmothers are holding their breath.

Seth was ready for preschool

I also have some video of Seth helping water the plants, and finally I show the big day when Seth was able to catch the bus for his first day of school. He knew that bus was coming, and he remembered this was good thing. He started preschool the last few weeks of the previous school year after he turned three.  Seth is able to go this preschool program because of some of his developmental delays related to Down syndrome. But, as far as we can tell, Seth thinks it’s a half day party every week day. Enjoy the movie.

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Sick and Tired

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Last week Ella got sick with a stomach bug, then 72 hours later, Kyle and Seth both got sick. In the midst of this, Emily was also sick, but with a milder case, and then I got sick. So, the best we can tell, we all were taken down by some kid that Ella got a little too close to in her class at church. Seth, as usual, gets the worst of it when sickness comes to visit the Fun House.  He also got the stomach bug, but apparently at the same time, he was developing another ear infection.  So, as soon as he recovered somewhat from the stomach bug, he had to start taking an oral antibiotic along with antibiotic ear drops to knock out the ear infection.  Just as the ear infection was being tamed, Seth had contracted another stomach virus.  And that is where we stand today.  Everyone else is on the mend, but Seth remains a very sick boy. Children with Down syndrome typically have a weakened immune system.  This explains Seth’s more frequent bouts with viruses along with his difficulty in fighting off viruses when he contracts them.

Everyone is on the mend, except Seth

We are thankful that Seth’s heart is quite strong and free from any known defect. The incidence of congenital heart disease in children with Down syndrome is up to 50 percent. But, while his heart may be functioning well, his body needs a break from this current sickness.  We’d like for him to be well enough to go to his school on Monday.  This will be his first full year in the PPCD program.  He got to go the last few months of the school year after he turned three, but now he’ll get to experience the half-day program all school year. Pray for Seth to feel better for that day.  We’d hate for him to miss going to school on the same day his big sister goes to kindergarten.

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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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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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Video: Noah Has Some Fun With a Swing, Bounce House, and Friends | Noahs Dad

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We spent some quality with some quality people. Rick, Abbie, and Noah joined our family in Tyler on Sunday to hang with my mom and dad and my brother and his family. Rick and Abbie have a six month old son with Down Syndrome. We’ve really enjoyed their friendship. You should check out their website daily for a one minute video of Noah. Rick and Abbie, who is very close to finishing her residency as an MD, want to educate and encourage other families who are working through all the new things related to having a child, born or unborn, with Down Syndrome. Importantly, they are doing this from a God-centered perspective, which is truly the only source of lasting hope in this world.

Swings are Fun!

via noahsdad.com

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Seth passes another hearing test with flying colors

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If you want to know why that’s a big deal, read the miracle ear story.

Seth is doing great!

 

 

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First Vacation And New Best Friends | NoahsDad.com

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Seth gives Noah a hand

via noahsdad.com
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