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Video: Seth Turns Five Years Old!

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Happy birthday to our Seth!!  Time does indeed fly by, as we can hardly believe that we just celebrated his fifth birthday. What a journey these years with him have been.  I say it each time- we wouldn’t trade what we’ve learned these last five years for all the world.

Seth is a treasure I wish the whole world could know.

It’s funny how Seth can be both our easiest and our most difficult child all at once.  Let’s start with easy:  he is the most content child I’ve ever known.  His favorites are easy:  Jesse and Woody (Toy Story) dolls, monkeys, bubbles, outside, Sports Illustrated football, basketball and baseball encyclopedias, Finding Nemo, Mary Poppins (mainly for Burt), watching replays of A&M football games, playing tackle, dancing, macaroni and cheese, pancakes, chocolate and DADDY.  Everything else I think he could give or take, but those are clearly his favorites and truly a win-win every time.  What makes him the most difficult?  Seth is by far the most stubborn of all our kids.  He will refuse to do even the simplest or most necessary of tasks (for example, go to the bathroom and wash your hands) just because he’s made up his mind that he doesn’t want to.  Forget bribery, forget pulling out the list of favorites.  If he’s decided no, we figured out finally that we’d better decide to put on our patient hats.  Seems we don’t have enough of those around here some days.  ;)

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Merry Christmas 2012

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We’ve been in a long battle of sickness off and on here at the fun house. We can’t seem to shake whatever is going around at school. As I write, Seth and Emily are both recovering from the flu while Ella, Kyle and I are hoping our number isn’t next. We are determined, however, to celebrate Christmas with a bang tomorrow morning. Here at the fun house, we will be celebrating Jesus and His arrival on earth as the God-man who would be the Savior.

We are so grateful for another Christmas season.

Jesus lived the perfect life that was required of us in order to satisfy an infinitely holy God. He died the death that we deserved because of our deliberate sin and rebellion. And, He clothes those who would believe with His perfect righteousness so that when God looks at us, He doesn’t see a rebel who deserves punishment but rather His son Jesus who has become our perfect sacrifice.

We love the festivities of this season, but we celebrate Jesus with great zeal and hope, because without Him our “holiday” would be pretty hollow. Our hope is certain, first of all, because we believe God’s promises are true in scripture, but also because He has proven Himself faithful in miraculous ways in our family.

We hope everyone has a safe and happy holiday season. Merry Christmas!

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Potty Training Success!

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After unsuccessfully cajoling Emily to write about Seth’s potty training success here at the Fun House, I decided to give my shorter, less compelling recount of that experience.

History

Many of you may remember a post back in July of last year discussing our potty training attempt with Seth. Seth wasn’t ready then and he made that quite evident through his vehement opposition to even the thought of sitting on a potty upon request. (This stubborn defiance, we believe, is about 50% a uniquely Down syndrome characteristic and about 50% Seth just reflecting the personality of his wonderful parents!) Additionally, we weren’t sure he was putting together the bodily output and the feeling that came right before it. Finally, our frustration and expectation levels were way out of sync with where they should have been. But, this is not unusual with Emily and me both being “bottom line” achiever personalities. We aren’t the type of people who typically just “enjoy the process” or “ease our way into things”. We like formulaic (A + B = C) answers and will carefully follow the process to ensure we get to the result on time and under budget, so to speak. I confess that I naturally fall into that camp even more than Emily. Continue Reading…

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Video: Spring break – making connections

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The Fun House had a great time during Spring break visiting people we love. We started with my big brother Marty and his wonderful family. Aunty Mandy outdid herself with gourmet dinner and breakfast the next morning! She is a wonderful cook and terrific mother to their two sons, Taylor and Tate. We got to celebrate Tate’s birthday a few days early, and I enjoyed playing basketball with Taylor. We played several games outside with Marty, and then Taylor beat me in basketball on the Wii.

Marty taking good care of Seth

After our visit there we enjoyed some quality time with Great Granny who just had her 92nd birthday. She was so excited to see the kids. The kids really enjoyed our lunch and the photo shoot that followed. We are thankful for Granny and my Aunt Cuba.

Granny and Ella have a special connection

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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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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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The Glory of God in the Gift of Disability – Desiring God

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In last week’s sermon on John 9:1-23, John Piper makes this bold statement:

via www.desiringgod.org

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Kyle says Happy Resurrection Day

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Romans 10:9
9 because, if you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved.

Kyle is ready for church

Joel

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Big Changes for Bubba

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Seth will be three on May 1.  I just can’t believe it!  In some ways, it seems like time has flown, and in others, it seems like we’ve done SO MUCH in only three years.  And I guess we have done a lot in three years to prepare him for this birthday.  Since birth, we’ve been preparing Seth for this day, because at three, Seth gets to start school.

This guy is thriving!

 

Since he was six weeks old, we’ve used therapists for Seth (PT, OT, SLP) through ECI- Early Childhood Intervention.  We’ve had such a fantastic experience and met some wonderful people- friends- through this journey of helping Seth achieve milestones along the way.  As his mother, I’ve received so much support, resources and help in this amazing journey of raising a child with special needs.  No doubt, the Lord chose some special people to come along side me during this time.  I have a new definition of hero:  those that have dedicated their lives and their careers to help kids like Seth and moms like me.

His next steps will be graduating ECI and moving to PPCD- Preschool Program for Children with Disabilities.  On Thursday, we had a big meeting with the school district in which Seth was evaluated by a Diagnostician, Physical Therapist, Speech and Language Pathologist, Occupational Therapist and PPCD Lead Teacher.  Talk about intimidating!  I had a hard time eating that morning…. BUT, the team was extremely warm and welcoming toward Seth and me, and we quickly felt comfortable and “safe” for lack of a better term.

They played with him for more than an hour through some physical exercises (kicking, stairs, jumping), fine motor (coloring, picking up small objects, peg board), cognative (puzzles, following directions, stacking, sorting, categorization) and launguage exercises (expressive and receptive communication).  It sounds like a lot, and it was.  But our little fella did GREAT!  If he was ever at his best, it was Thursday afternoon.  I’m praising God that he felt good and was able to just shine.  Of course, he charmed them and they were eating out of his hand by the end of the evaluation.  PT said he might get some gross motor work at school to help with stairs.  OT was totally impressed that he held a pencil the right way and could draw a circle.  SLP was amazed at all of his signs and emerging/existing words.  Lead teacher said he’ll be the favorite in school without a doubt.  They LOVED him and I heard “he’s SO cute” about a hundred times.  :)

So, off he goes.  Big changes for Bubba….and Ella too.  Can you imagine how she’s going to react the first day that the bus shows up at our house to pick him up and she can’t get on it to go too?  I know that he’ll do well in PPCD and I’m very comfortable with and excited about him starting on Monday, May 2.  I’ll take him to school the first few days and let him get used to riding the bus home before I send him off on it in the mornings, but that is the plan by the end of the first week.

We ask that you would continue to pray with us that the Lord would help his little brain to make those connections so that his speech will continue to grow.  We’ve seen great improvement in the last few months and it sure is making life at the Fun House a lot easier with a communicating toddler!  God has been so, so good to us and to Seth.  He has been faithful to provide for us and send folks to encourage us along the way.  It’s my prayer that one day, Seth would be able to tell his own story of God’s faithfulness in his life.  When I look at Seth, I can’t help but think about how amazing and how creative our God is.  I’m just humbled that we were chosen to love him every day of our lives.

Pray for Seffy on Tuesday morning, as he’ll be having his fifth set of T-tubes (ears) and a tonsillectomy.  Should be an overnight hospital stay for us, so please pray for rest, complete healing, and logistics.  Pray with us that this surgery will help provide relief and complete healing to Seth’s chronic ear infections and sleep apnea.  To God be the glory!

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Buy it today: Finding God’s Will by Gregg Matte: Books

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Find God's Will by Gregg Matte

In this book our pastor, Gregg Matte, weaves scripture and stories to help the reader find and submit to God’s will. We were excited that Gregg used Seth’s story as a way to demonstrate God’s grace and sovereignty.. May God use it for His glory.

Support missionaries by doing your shopping through Kingdom Markets.

 

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