Buddy Walk

For people whose lives are touched by Down syndrome, the Buddy Walk is THE event.  It’s a giant party to celebrate people with Down syndrome and to increase awareness of Down syndrome.  Our local chapter put on a great walk, and it was truly heart warming to see so many people there.  We had so much fun, ate lots of good food, and had a great time getting to know other people from around the area.

Just look at all those people!  And there were at least that many not in the picture.

The balance beam was a big hit with everyone.

Big Blue!!!

 

Face painting.

Loving the petting zoo.  Until Rachel got nipped on the knuckle by the tiny little dog (not in the picture).

Daniel LOVES the gymnastics rings!!  Definitely his favorite part of gymnastics every week.

Perhaps a little hesitant about the slide.

Rachel loved it though!

Photo-op with the women’s soccer team from the University.

Daniel couldn’t take his eyes off the beautiful blonde behind his right shoulder!

Star Wars dudes.

Lovin’ the swing!

Squeezin’ in a little work-out.  Mom’s keys are the ultimate motivator.

If you’ve never attended a Buddy Walk, I would encourage you to put it on your list of things to do.  They’re held yearly – usually during Sept. or Oct.  Do it for Daniel.  Do it for Down syndrome. 

Sunrise

One of the good things about getting to take Emily to school this week is that I’ve been able to see the sun coming up.  If I didn’t dislike mornings, I’d be up every day to see the sun rise.  It’s one of my favorite things.

I just had to get a shot of what I saw this morning.  Pictures rarely do justice to what my eyes see, but this comes pretty close.  I love the orange clouds.  They looked just like sun rays.

I feel so lucky to live in such a beautiful place.  There is never a shortage of amazing things to see.  From the beautiful colors of fall, to the glistening frost, to the amazing mountains that surround us: this valley is simply wonderful.

Thursday Evening Musings

It’s been a long week!  I don’t have anything significant to post tonight, so I offer up some of my deep thoughts.

• Why doesn’t my kitchen table expand width-wise rather than length-wise?  It makes so much more sense to have a table become more square than to have it be so long that you have to use a megaphone to carry on a conversation with the person at the other end.
• Why is it that my kids don’t believe most of what I say, but they accept nearly everything a sibling says without question?  For example, when I say, “You need to go do the dishes,” they give me a funny look, or flat out refuse, and usually end up walking the other way.  But if a sibling says the same thing, they come crying to me, saying, “Mooooom, (insert sibling’s name) said I have to do the dishes!!  It’s not my turn!  Why do I have to do the dishes?”
• It is a proven fact that if a kid pukes, 90% of the time it will be when Jared is gone.  Or he’s puking too.
• My kids – even Caleb – think that Obama is to blame for everything bad in this world.  I’m not saying he isn’t, but I’m wondering where in the world they come up with this stuff!!  Jared and I rarely talk politics, and when we do, I’m pretty sure it’s when the kids are in bed.  Ever tried to have a political conversation with 5 kids around?  OK, ever tried to have any kind of conversation with 5 kids around?  It’s sort of like running into a brick wall, over and over and over….
• Since having Daniel, I have learned all about people-first language.  (Actually, I learned about it in my grad. studies, but I won’t get into that.)  Many people in the Down syndrome community get upset if you say, “a Down’s child” or “Down syndrome kids.”  People-first language dictates that you should say, “a child with Down syndrome.”  It doesn’t really bother me.  Intentions are far more important than syntax, in my humble opinion.  I am willing to bet that, in most cases, the people who get upset about it never used people-first language before their kid with Down syndrome came along!  What does bother me is when my kid gets lumped into a group and is automatically deemed to be a certain way, just because he has Down syndrome.  More on that later.
• I am still bristling about the ticket I got Tuesday morning.  I replay the scenario in my head several times a day.  It always ends with me giving my sob-story and getting some empathy in return.  How come it didn’t turn out like that in real life?
• Who knew that there could be so many ways to design lighting in one house?!?  I spent time with the electrician this evening, and an hour on the phone with Jared going over lighting and switches and where to put what and how many of each kind of light we want.  My head is spinning!  Which reminds me: I am NEVER EVER going to build a house again.  I knew it would be a pain in the neck, but this is ridiculous!

It is 11:22, and my thoughts are quickly losing lucidity.  Have a great Friday!

Building a House: The Guts

We’re about halfway through with the process of getting the house’s guts in place.  The shingles are done, and most of the windows are in.  The plumbing and HVAC are done, for now anyway.  The electrical work has started, and when that’s done (in about 2 weeks…OY!) the insulation will be installed.  THEN the sheet rock will go up.  UGHGH!!  Getting all the guts taken care of is a slow and painstaking process.  And it hasn’t helped that the guy who was going to be helping Jared with the electrical work up and QUIT ON US last week.  Major dork!!  Luckily, Jared has connections (and knows almost every single person in this valley, I swear), so we have a new guy on the job now.

These pictures don’t show a whole lot of change, but they’re still fun to see!

The front.  That post on the porch is temporary.  Eventually there will be a bigger post there, which will be wrapped in brick.

The back.  Not sure when they’re going to put in the sliding door.

Some of the attic guts.  This is the heating system for the main level and bonus room.  The ducts for this thing are HUGE!  Thank goodness they’re all in the attic.

Most of the basement guts.  This is the heating system for the basement and the main plumbing center where the water comes into the house and then branches out to all the other locations.  It was pretty neat seeing the intricacies of all these units as they were planned and assembled.

I’m trying so hard to be patient as we experience decision-making exhaustion and school-drop-off fatigue.  I am putting about 30-35 miles on the Suburban every day just taking and picking up kids from school!!  I think maybe I’ll move my bed to the Suburban and make it my official residence.  When all is said and done, it will be heaven living a life that is a little more mundane!

Just a Regular Family

Let me just tell you about the past 15 hours or so, just to illustrate what a regular – but, unfortunately, never boring – family we are.

First off, Jared is out of town this entire week for work.  If you know me, that speaks volumes.  I am not good at parenting by myself!!  We all have a hard time when he is gone.  And we’re super happy that he is very rarely gone.

Rachel would not each lunch yesterday because she said what I gave her is gross.  In our house, the general rule is that you don’t have to eat what is given to you, but if you choose not to eat the meal, you go hungry until it is time to eat the next meal.  By about 3 p.m. she was starving, but still refused to eat.  She began complaining that her stomach hurt, which I attributed to her refusing to eat.  We ate a pretty early dinner (right around 5:00), and she ate it all.  By the time she was done, she was complaining that her stomach hurt really bad.  She was in pain and miserable all evening.  Around 8:30 p.m., she threw up.  Oh man!!  We just did this less than a week ago with Caleb.  I thought by now we were in the clear!  She continued to feel pretty miserable and threw up again a couple of hours later.  She slept on my floor and was up off and on moaning, swishing with water, and getting sips of water.

This morning I drove Emily to school.  This is the first time I have ever taken her to school.  I dropped her off, flipped a U-turn, and then saw the flashing lights in my rear-view mirror.  Apparently there’s a “no u-turn” sign that I just didn’t see.  Having never dropped her off before, I was a little frazzled with all the traffic and where to drop her and coordinating pick-up after school.  There was a bus stopped in front of me, the sun was just starting to be a nuisance, and I just didn’t see the sign.  Mr. Sherriff-man didn’t seem to care that I honestly did not see the sign, nor did he seem to care that I have 20 years of driving without a ticket.  He handed me my ticket and said, “Be careful today.”  Oh the things I WANTED to say to him.  Do not get me started on my soapbox about cops hiding in corners, just waiting to pounce on drivers who are honestly trying to obey the law and, in the process, make one tiny innocent mistake!!!  I bet he could have found at least two other vehicles that were actually being dangerous in the same time he had me pulled over.

We drove back by the area after dropping Josh off at school, and, sure enough, there is a “no u-turn” sign.  Which is a lot easier to see when you’re looking for it, and there is no traffic, and the sun isn’t coming up and shining in your eyes.  Just sayin’.

Now we’re home, trying to do all the stuff that needs to get done, like paying bills, getting kids caught up on homework, keeping a very curious Daniel out of toilets and engaged in something more beneficial.

Oh, and grumbling about ticket-happy cops and cleaning up vomit, and wondering why this all happens when Jared is out of town.

I’d say we’re just one happy, pretty typical family!  And if you think we’re not, please don’t tell me.  Just let me live out my days in blissful ignorance. :)

As of 8:30 p.m.: Daniel decided to get in on the puke-fest this afternoon as we picked up Emily from school.  Hey – he doesn’t want to miss out on anything!

My point in sharing this is to (hopefully) make it obvious that Down syndrome does not rule our lives.  Not by a long shot.  We are just a busy family, living our lives and trying to enjoy the ups and downs and everything in between.

Yet another update, 8:54 p.m.:  Josh just joined the puke fest.  Four down, one to go.  I wonder if I’ll get one day this week without a sick kid home from school?!?!

It’s Down Syndrome Awareness Month

Happy October everyone!  I’m going to give the 31-for-21 challenge a try again this year.

To refresh your memory…since October is Down syndrome Awareness Month, I’m going to try to post every day (31 posts) during the month of October in honor of Down syndrome (which is 3 copies of the 21st chromosome).  31 for 21.  Got it?  Good!

I know I can’t possibly post something every day that has to do with Down syndrome.  So I’ll give you a little bit about Down syndrome and a lot of stuff about our family. 

If you want to find other blogs participating in the challenge, click here.

Happy Heart Day (a little late)!!

Hello all you blog people!  This is Daniel.  I’m writing for my Mom tonight, ‘cause she’s kinda embarrassed about forgetting to write about an important day on this blog.

I can’t believe she forgot to write about it!  Shhh….don’t tell her I said so!

It’s OK, though.  I’m not mad or anything.  I just thought it would be fun to tell you all about it myself!

A whole bunch of days ago (OK, mom said it was a YEAR ago…whatever that is!), I got dressed up in this funny shirt thing, and there were lots of strange people coming in and out of a small room to look at me and talk to my mom and dad.  They all said how cute I was and lots of other stuff like that.

Mom and dad seemed kinda’ worried.  But they were giving me lots of snuggles and kisses, so I was A-OK.  We walked down a hall with one of the guys that came in to talk to us, and then they let him hold me.  He was a really nice guy.  I didn’t even cry at all! 

And then I went to sleep and when I woke up things were reeeaallly weird!  There was all this stuff on me and and I was in a weird crib and there were lots of strange noises and lights.  And I got to see my mommy and daddy again.  And they looked so happy!

Mommy said that all those things were helping make me better.  And when I was all better stuff like eating and playing would be so much easier.  After lots of days sleeping in that weird crib, we got to say “Bye” to all those nice people that kept saying how cute I was and go home to my own crib.  And I got to see all my brothers and sisters again, and my Dad too.  Boy, I missed them a lot!!

And now I’m such a big boy!  I can crawl super fast like a spider, and I can even walk around if I have something to hold onto.

You can see that line on my chest where they fixed me up.  My mom likes to call it my zipper.  I don’t know what that is, but I’ll always know that I can do everything I do because those doctor guys put that zipper in my chest.  I like those doctor guys!

So Much To Catch Up On

We moved.  And my drive apparently went on strike and stayed at the house we left, because it feels like I haven’t done a whole lot of anything lately.  Well, except put miles on the Suburban.  I’m really good at that!  We currently live in a house that is smaller than the main level of our other house.  And it’s by a dairy.  So we call it “The Little House by the Dairy.”  Catchy, eh?  There are a lot of flies and spiders (and I killed a centipede on the kitchen floor yesterday), and at certain times of the day the air is smelly.  But we have enough space to live, a garage big enough to hold all our stuff, and a street quiet enough that the kids can ride their bikes.

Moving wore Caleb right out!  He’s asleep in a box, which is under a desk.  How would it be to be able to sleep anywhere?!?

Caleb started preschool.  FINALLY!  That two-week wait after the others started was tough.  But he’s a tough kid.  And pretty funny too.  His new catch-phrase is, “That’s INCREDIBLE!!”

Not a great picture, what with the squinty smile.  But he held still…just long enough to get the picture snapped.

Our new house is moving along.  It looks mostly the same from the outside, so no point in posting a picture.  Actually, I don’t think I even have one to post!  We’ve been trying to figure out who to go with for cabinets.  Believe it or not, there are plenty of options, even in our lil’ ol’ valley.  When we figure that out, we can decide on flooring.  The windows are coming this week, and the front door next week (maybe?), so then the brick can go up.  Just in case you didn’t know already, I am not good at making decisions.  I AM good at second-guessing any decision I make until I have driven Jared absolutely crazy (and anyone else who’ll listen)!!  For the record: I am never going to build a house again.  It’s great to get to have things (mostly) the way you want.  But it’s a headache, and somewhat nightmarish.  Really.  I go to sleep and dream about ridiculous things like cabinets and water heater vents and drain pipes. And for someone who is as challenged in decision making as I am, it’s just not a good idea.  The end product will be worth it, though.  I think…:)  I am looking forward to the days when the biggest decision I’ll make is what to have for dinner!

The End of an Era

Jared was released from the Bishopric today.  Four years, two months and three days ago he was sustained as the First Counselor to our new Bishop.  (For those of you reading who may not be LDS, a Bishop is the leader of a local congregation in the LDS Church.  He is assisted by two counselors.  The three men together make up the Bishopric.)

That equates to 218 weeks.  Which means I was a Sacrament Meeting Widow for roughly 200 Sundays.  Though I did have my awesome friends Hillary & Alex on the bench to help me for about half of that time.

I had been anticipating this day for, well, 218 weeks!  I couldn’t wait to have Jared sit on the bench with us again.  And to not have to deal with coordinating his responsibilities with my Young Women responsibilities sounded pretty darn good.

I was shocked at the sadness I felt when this day finally came.  I don’t even know if I can explain it.  But there’s something comforting knowing that Jared was doing what the Lord wanted him to do.  I never worried about him.  I never really worried about us.  Our lives got pretty insane at times, but I knew we would be OK.  It felt like we were in a little bubble, safe from the world’s problems.  Don’t get me wrong, though – we had plenty of “stuff” in those 4 years.  A broken nose, a broken arm, a cat attack and subsequent hospitalization, knee surgery, the birth of a baby, Down syndrome, heart surgery, three sets of ear tubes between two kids, four tax seasons…oh, and a harried wife/mom for a good 218 weeks, just to name a few.

As much as I am relieved to know that Jared will be back on the bench with us, it was a tender mercy to be able to look up at him on the stand every Sunday and have him smile at me or pass a “You better behave!” look to one of the kids.  It was a blessing for me to see him from a distance every week and be reminded of how much I love him and how much I need him.

While the past 218 weeks have been the most difficult of my life, I will always be grateful for them.  We are better and stronger and happier than we were 218 weeks ago. I think we’re all a little closer to being who we’re supposed to be. We have been blessed immensely.

Building a House: A Roof Over Our Heads

We’re thankful to finally have a roof over our heads – in more ways than one!!  Here is a view of the house with its roof and the “felt” that makes it waterproof.  It got done just in the nick of time, as we had quite the downpour early Saturday morning.

Next up on the docket is getting the stairs in, finishing up the framing, and then the heating/cooling systems and plumbing.

We also have a roof over our heads for the next 3 months.  A little house in the west end of town.  Emphasis on “little.”  But the garage is bigger than what we currently have, so it should be a great storage unit for most of the stuff we have accumulated in the past 13 years.