Happy Friday!

I am at a loss for words today.  It’s fried-brain Friday and it’s late.  I do have a great idea for a blog (thanks to my dear hubby), so stay tuned for some fun tomorrow!

I Am Happy Because…

It’s one of those days today.  I’m sure you know exactly what I mean.  Time for some positive thinking!

I am happy because…MOST of the time Daniel sleeps from 10 p.m. until 6 or 7 a.m. (He was up at 4:30 this morning.)

I am happy because…Daniel fell back to sleep after I fed him, which means I fell back to sleep.

I am happy because…my sweet husband got Emily off to school so I could go back to sleep.

I am happy because…all the kids – except Daniel – are asleep in their beds.

I am happy because…I have 5 great kids.

I am happy because…MOST of the time homework is a quick and easy task.  (Tonight it was not.)

I am happy because…I get lots of snuggles and kisses from more than one child.

I am happy because…Rachel thinks her mama is pretty.

I am happy because…I got out of the house today (even if it was just to WalMart).

I am happy because…Fall came back this week.

I am happy because…the frost came and now I don’t have to can another single thing this year.

I am happy because…tomorrow is Friday!!

I Am a Child of God

I heard the music to this video at church a couple of weeks ago and really enjoyed it.  Then I saw the actual video and it brought me to tears.  I have known and sung this song since I was a small child, so it was really nothing new.  But it came as a very tender reminder of who my children are, and who I am.   I love that this video shows all different kinds of people. Just at the point that I was wondering, “Where are the people who are a little different?” there was a frame with two little girls with Down syndrome.  Watch closely at around the 2:10 mark (in the top, middle group).



This belief – that I am a child of God – is one of the most comforting and empowering things I have come to know in my life.  If only everyone would look at others as children of God…we wouldn’t have to worry about things like discrimination and hate crimes and so many other attitudes that bring heartache with them.  Just imagine the world where everyone knows who they are and acts accordingly!

So, who are you?

Oxygen Raspberries (now viewable)

Just a quickie post tonight.  It’s been a crazy busy day today, and I’m lucky to get this post checked off my list!

Enjoy this little clip of Daniel blowing raspberries on his nasal cannula.  He delights us with these little noises far too often (too often because it should be in his NOSE, not his mouth)!

The Hardest Part About Down Syndrome

We’ve been on the Down syndrome journey for almost 6 months, though I really believe we’ve been on it for more like 10 months (since the 20-week ultrasound last December when we found out about the very likely possibility of Down syndrome).  I feel like I’m at a really good place.  I love Daniel so much, it almost hurts.  It is an intensely fierce emotion that surprises me sometimes.  I don’t think I love him more than any of my other kids.  But it feels different.  And I love it.

Ten months ago, I was an emotional wreck.  The hardest part about Down syndrome – for me – was the initial shock.  The lifetime of emotions that came crashing down in an instant.  The fear.  The worry.  The feeling of loss.  All the questions that I needed an answer for. The mind can be a cruel thing at times.  I’ll never understand why it tends to bring up visions of the worst-case scenarios.  I lived my entire life in that moment, and all I could see was a life I no longer recognized.

Reality is so much better than the conjurings of a scared and overwhelmed mind.  Thank goodness for only living one day at a time!  The life I’m living now is a world away from the picture I had all those months ago.  And it’s good and happy and so very rich.  And I can’t even fathom not having Daniel – all 47 chromosomes of him – to enjoy it with.

(I just have to remind my crazy little mind to get back in line every once in a while!)

Sunday Best

A new idea!  The best of the best for Sunday.  Pictures, quotes…anything goes!

We rarely get a smile out of this kid.  Jared won the lottery with this one!  Can anyone say, “Missionary”??

Sisters.  When they’re not fighting, they sure do love each other!

Two of the best playmates around.

Caleb fell asleep.  On time out.  Wrapped up in the rug.  On the [really hard] tile.

Cutest baby EVER!  Those eyes, how they sparkle!

Just a Taste

I thought you might want to get just a taste of what life is like with a 5-month-old who happens to be on oxygen.

It’s a constant battle to keep that thing OUT of his mouth!  We have resorted to moving the stickers closer to his nose, and it seemed to do the trick…for a day!  This kid is just too smart!  It is quite entertaining, actually, to see the lengths he goes through to keep the cannula out of his nose.

Just a Typical Week

I’m going to take a break from Down syndrome posting today.  This IS our family blog, and we always have a lot going on.  So, I think it’s time for a family update.

Monday brought parent teacher conferences for Emily and Josh.  They are both great students and their teachers had nothing but the highest praise for them.  That always makes me beam!  It is so nice that they do what they’re supposed to when I’m not around, and I’m so glad their teachers recognize what great kids they are.  I have to admit that I underestimated Emily with this change from elementary to middle school.  She has proven me wrong in a BIG way.  This isn’t the first time she has served me a great big piece of humble pie!

We had an extra special treat for family home evening to celebrate Emily’s and Josh’s accomplishments in school.  Jared was in charge and decided on Zeppe’s, an Italian frozen treat place.  The kids had Italian water ice in various flavors, and Jared and I shared a gelata, which is Italian water ice and frozen custard.  The kids loved it.  I’d rather have ice cream.  I wish I would have had my camera to capture the four older kids sitting in a row on the bar stools.  Though I probably wouldn’t have been able to get a decent picture, as Caleb bounced back and forth from one end of the place to the other, with an occasional ninja move thrown in just for kicks.

The kids had the day off school on Tuesday because of parent teacher conferences.  I LOVE days when we don’t have to be on a schedule and we can just lounge around and enjoy a little freedom.  Emily stayed in her PJs the entire day, and Rachel was in hers until well into the afternoon!  The weather was a little weird, with pounding rain one minute and blue skies and sunshine the next.  Jared only worked half the day so he could have some time to spend with the kids.  That made it easy for me to run to my dentist appointment in the afternoon.  It’s nice to have clean teeth, but my mouth is sure not recovered from pregnancy hormones yet.

It was hard to get back to the school routine on Wednesday.  Six a.m. comes awfully early!  We had a typical day of school for the big kids and preschool for Rachel in the afternoon.  Caleb and I took Daniel to the doctor’s office for a quick weight check.  Daniel weighed in at either 13 pounds, 1 ounce or 13.1 pounds.  So, he has gained about 1 pound since his surgery.  Hmmm…I was hoping for a little more.  We’ll have to see what a week off of the Lasix brings.

The kids and I had a Wii night while Jared was at the temple.  Rachel is quite the swordfighter, so you better keep an eye on her!  One of these days I will get her on video.  She gets her entire body going, and manages to keep a smile on her face and giggle the entire time!

Jared and I went to the High Priest social up at Beaver Creek Lodge on Thursday evening.  It had been quite a rainy day, and we could see the snow level creeping down the mountain.  I was hoping we’d get a call saying they were moving it to the church, but no such luck.  It was a beautiful drive up the canyon, and we had a good time at the social.  It was snowing for most of the drive home, but thankfully not sticking to the road.  Where has fall gone??  It was summer on Monday – 80 degrees – and now it’s in the 40’s and miserable!  I am NOT ready for winter!

As a side note, Thursday was the first time we have left Daniel with someone else (besides at the hospital)!  I felt kind of lost without him, and I was about 10 pounds lighter without the oxygen to lug around.  I almost couldn’t stand to be away, and was happy when we were on our way home.

And today…Friday!  Rachel got to take the snack for preschool today, and that’s all we’ve heard about for days!  She came home singing a cute song about pumpkins and witches.  We had chili and cinnamon rolls for dinner…the perfect way to celebrate the end of the week and warm up from the cold, wet weather.

What I Like About Down Syndrome

These almond-shaped eyes.  Deep blue.  Captivating.  Piercing.  It feels like they can see right into my soul.

 

These hands.  How can you resist those adorable bent pinkies?!?

This smile.  It lights up the room and melts anyone within its reach.

I love the people I’ve come to know because of Down syndrome.  I love the acceptance and compassion I have felt from them.

I love how my family is learning about love and acceptance on a whole new level.

What I like most about Down syndrome, though, is that it is changing me.  Little by little, tiny piece by tiny piece, I can see myself changing for the better.

21 Things About Our Family

There are people out there who think that a diagnosis of Down syndrome will completely change a family.  That life will suddenly become unrecognizable.  I beg to differ!  There are things that have changed for us, but that seems to happen anytime a new child is added and, as a result, the family dynamics change.  We are more busy…but mostly because our kids are getting older and are involved in more things.  Yes…we’ve had a few more appointments with Daniel, most of which are related to his heart.  We are simply a regular family, trying to do the best we can to raise our kids and grow into the people we are meant to become.  I also don’t believe Daniel was sent to us because we’re such a great family.  On the contrary, I think he was sent to us to teach us how to be great.

Here is a list of 21 tidbits about our ordinary, but very blessed, family.

1. Our family was created on August 10, 1999, when Jared and I were married in the Salt Lake LDS Temple.  It just so happens that it was one day before the historic tornado that carved a path through downtown SLC.

2. We have lived in 6 different locations, including 2 years in sunny California.

3. We have never been to Disneyland.  But we have been to Legoland.

4. When Emily and Josh were little (before the others came along), we liked to play a game called Pollywog.  It was a silly game that Jared made up (probably to bring a smile to the face of an unhappy child…or maybe a grouchy mom).  It involved tying a blanket around one’s head and bouncing around, with an occasional outburst of “Pollywog!”  Emily and Josh loved it.

5. We have never owned a brand new vehicle.  We’re cheap.

6. We have lived in our house for 6 years.  That is three times as long as we have lived in any other place.

7. We love to sit down and watch movies together.  Including the Monkeys (yeah, that TV series from waaaay back in the 60’s).

8. We love to play music loudly while we work together.

9. Speaking of music…our kids know the lyrics and writers of more ‘60s and ‘70s music than I thought possible.  It’s scary.  But I’m glad they’re not into Justin Beiber and all those other teeny-bopper groups.

10. The first time we took our kids to a movie in a theater was to see “Napoleon Dynamite” while we lived in California (so we just had Emily and Josh).

11. We enjoy having Donut Fest for a Family Home Evening treat.  We each pick out a donut at the grocery store, bring them home and cut them into pieces to sample all the variety.

12. The only movie we have been to – in a theater - as a complete family (since Daniel arrived) is “Cars 2.”  We had a great time, but in all honesty…it’s just easier and more enjoyable to watch a movie at home, on the couch and in our PJs!

13. We celebrate our house’s birthday (the day we closed) every year.

14. Our house and one apartment were brand new when we moved into them.

15. Our rent for a 900 square-foot apartment in California was more than the mortgage on our 2500 square-foot house.

16. We have had 2 fish (they both died, see here and here), and 6 cats (3 have disappeared, we gave 1 away, 1 was run over on the street in front of our house, and we still have 1).  That’s not a great track record!  Which makes it sooo easy to say “NO!” to the dog the kids want us to get!

17. Three of our five kids have had oxygen at some point in their lives.  Emily had it when she was five for around two weeks because of pneumonia.  Rachel had it for the first two months of her life because she was born five weeks early.  And now Daniel, who will surely break the length record.  We are oxygen pros!

18. We like to eat leftover pie for breakfast.

19. We try to eat dinner together every night.  We are pretty successful, even when it is tax season!

20. We are lucky enough that my grandparents, my mom, Jared’s parents, and all our siblings live within 100 miles of us.  That means our kids get to spend time with grandparents, great-grandparents, cousins and even their parents’ cousins and kids!

21. We feel very blessed in so many ways…most especially that we are a family, and because of the Gospel of Jesus Christ we can be together forever.