In the midst of the sickness, Seth and I found some time to rough house at the Fun House a little bit. Ella and I play a game where I close my eyes and then she tries to run around me without me getting her. Seth likes to change the game up where I close my eyes and then he falls into my arms. He’s not nearly as interested in running away as he is running right into my arms. I quite enjoy the game. He doesn’t think I’m playing the game right if I don’t close my eyes. You’ll see him motion for me to close my eyes in the middle of the movie. Enjoy the movie!
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.
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.
Ella just finished her second season of dance at the YMCA here. It ended with a dance recital for the parents to watch. Unfortunately, I wasn’t able to go because both Seth and Kyle were sick with the stomach bug. So, Emily and Ella pranced off to the event and I rolled up my sleeves to continue the care-taking/janitorial duty that Emily had performed all day. Thankfully, Emily took the camera and got some good video. I was able to enjoy Ella’s show with her on the couch when she got back home. In the video, I love how she’s the only one mouthing the words to the song. She’s really into it!
Invariably, my birthday turns out to be another opportunity to let the kids celebrate. This birthday, I decided to “celebrate” at the local bouncy house. I took the opportunity to get some fun video of Seth, Ella, and Kyle. Seth gets the slow motion treatment on one of his big spills. Don’t worry, he wasn’t hurt. Before we went to the bouncy house, Emily made a hearty breakfast for us to enjoy.
The kids couldn’t wait for me to open my gifts. They got me pajamas. Ella believes that I should have an outfit for bed. So, we’ll see how that works out. The chief Fun House video editor is aging.
In light of all the special work we do with Seth to help develop his speech, Emily and I marvel at Kyle’s oral motor skills. He’s just showing off in this video.
Emily took the kids to the bouncy house today. This particular bouncy house had a really steep slide that Seth was able to climb all the way up and slide down. Compared to the other bouncy house we’ve been too, this slide was very fast. He absolutely loved it.
At the house this evening, Seth found his cowboy hat and boots and decided to match that up with his pajamas. Kyle found his way over to the drums and gave us a nice beat. Ella was busy taking down fake notes about my health issues. She brought out the doctors kit, and she and Seth were taking care of the entire household’s ailments. As you’ll see in the video, Seth was checking Kyle’s heartbeat by putting the stethoscope on his head. In short, it was another fun day here at the Fun House.
Kyle decided to move himself across the floor. It’s not surprising that he can’t keep that big ole tummy off the ground. But he is making it happen somehow. Honestly, he needed to figure this out just for basic self-preservation. On the very day we took this video Seth jumped on top of Kyle and rammed his little head into the dresser. So, there is great joy in the Fun House that Seth will soon have to chase Kyle down before inflicting any punishment. Seth doesn’t do it maliciously, most of the time, but that doesn’t mean Kyle doesn’t take a beating. The love Seth has for his brother is strong, but sometimes it’s a bit too strong.
The second part of the short video shows Seth and Ella styling mom’s hair. If these two could really style and color mom’s hair they could save dad a lot of money. Enjoy the show!
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.
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’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.
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?
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.
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?