Tuesday, July 1, 2014


We just got back from our vacation to the CdLS National Conference in California and I know I didn't post a lot about going or at all while we were there but I don't want you to think for a MOMENT that we weren't crazy excited about being there and incredibly thankful to everyone who made this trip possible.. I think we live in a fairly safe place, but I must be a little old school and just kept picturing that commercial where the lady posts on Facebook about going to Hawaii and the burglar cynically comments "Have a nice trip.." It makes me laugh every time, even though if someone actually tried to break into our house while we were gone, they would soon realize that the joke would totally have been on them - they would pretty quickly realize that we have pretty much nothing of value for them to take. They probably would have felt bad for us and instead of robbing us would have ended up leaving us something from their previous raid out of pure villain sympathy.. after looking at my 'vintage' computer- "Here lady.. take this new MacBook. It looks like you could use it a lot more than we can.." 

Thanks to a very generous donation of 'fun money only' from some wonderful friends we were able to do a lot of extras in California we weren't planning on doing. 

We left early Monday morning-as in we had to wake the kids up at 4am to get to the airport in time- you know because we heard things might get crazy with as many as 180 people there.. ;) When we were walking stumbling out to the car in the dark that morning I overheard Charlie mutter incredulousl,y "You woke us up in the middle of the night???"

First time on a plane for all these boys!

We LOVED seeing the ocean for the first time

and had such a blast just hanging out, swimming, eating at cute little restaurants on the boardwalk..
I could about pack up and move right now. It was so beautiful!

I have a feeling I could lose this one to the west coast someday.. He loved the waves.

Boogey board rental = best $5 spent on the whole trip. Except maybe the $5 rental for a luggage cart at the airport so we didn't have to haul our 8 carry-ons + 4 car seats around the entire airport by hand all afternoon on the way home.. It's a toss up.

We visited some tide pools at Little Corona Beach and while we didn't see any star fish like I was really hoping for, we did see lots of crabs and mussels and a sea urchin or two. Oh, and I totally made the boys pose here for a pic, knowing the waves were going to crash up behind them. Hee hee..

The next day we had SO much fun on a whale watching trip. 

The dolphins swam right next to the boat

and were jumping all around us!

We even saw a few whales on the beach...
Whoops! Now how did that picture get in here...

Dad, Papa, and the boys went on a fishing trip too and they had a great time! 

Oh, and Nolan even caught an octopus but you'll have to take my word for it, because really.. who would think to take a picture of your eldest son after he catches a freaking octopus in the ocean. Something about helping the other child and not feeling good and sea sick and blah blah blah.. I'm not saying I'm bitter about it, but there are SIXTEEN pictures of BIRDS from that fishing trip but the octopus? Totally nonexistent.. 

We also did Disney one day and of course CARS Land was our favorite! 
We found it pretty easy to get around in California, except for the trip to Disney, which was only supposed to be 20 minutes away, but getting on the 405, going the wrong way TWICE added an extra hour to that trip.. Good thing JJ and I stayed totally calm and encouraging toward each other the entire time. Or actually the opposite of that..  

Disney was fun, but honestly? With all the waiting and crowds and more franctic pace, 
I probably would have traded it for just another day at the beach.

And if you're starting to think, "Ummm.. didn't you guys go there for some kind Conference or something?" Why yes, yes we did. The CdLS Conference started Thursday and we got some really good information from the specialists we signed up to see. Our Speech Therapist gave us some great tips to help Ella develop more words and said she has studied many children with CdLS and believes Ella will not only say her name, but be able to spell and read as well. The Developmental Pediatrician helped us troubleshoot some challenging behaviors we've had lately with Ella (such as casually walking past Hudson and giving him the V-8 slap to the forehead and knocking him over..). Our Special Education Teacher helped give us some tips on starting our IEP and getting into the school system and reassured me that it's okay if she doesn't start school at age 3 like many other children do. We also made a bonus visit to a GI Specialist as well who was able to give me some much needed reassurance that even though 90% of kids with CdLS have some kind of reflux, if Ella isn't having any symptoms, we really don't need to scope her to check. (Something I worry about a lot since I know it's recommended so future damage isn't caused, but something our GI didn't want to do without symptoms since it's fairly invasive) We were also able to attend some workshops on Medical Research, Financial Planning for your child's future, hear from adults with CdLS on their daily lives (even one who is graduating college this year with a 4.0!), connect in a small group of moms with children the same ages and share the challenges we have faced with understanding the diagnosis (and dads had the same opportunity as well). 

I don't have as many pictures as I hoped since my camera wasn't working all the time after someone (not naming any names.. JJ) spilled water all over it our first night in California, but here are a few of Ella's friends from our Banquet Saturday night. 

Ella was tearing it up on the dance floor

and trying to give her boyfriend a hug. He's kidnof a ladies man..

We were squatted down trying to take pictures of these two, so of course they squatted down too. So cute!!

We had a great time reconnecting with old friends and meeting new ones.

And I'm so so thankful we were able to bring all the kids along, because they made some really good friends as well. 

This is so important to me because I know as they get older they might go through a time where they struggle with having a sister who has special needs, something I don't know anything about. I know if they have someone to talk to, or just someone who understands, that will help so much.

Seeing them interact with kids who look different from them was so touching. To watch them play tag with a little boy who was using a walker and include him in their game was priceless. 

Charlie tagged along with this guy at the Banquet Saturday night and ran around collecting money "for CdLS kids" and actually ended up raising $70.17 to donate to the Foundation! Sometimes I worry about how having Ella as a sister will affect the boys as they grow up, but this just proves to me that the compassion these kids are witnessing will have a far lasting impact on their lives.

There were so many times throughout the week where I would just look around and be so overwhelmed with gratitude for all the people that made it possible for us to be there. While I watched the kids splash in the ocean, my eyes filled with tears and again when I looked around the hotel lobby and saw all the CdLS kids gathering. Two years ago when we heard the next CdLS Conference would be in California it seemed like a very distant dream that we would be able to go. We cannot thank every single person enough who helped us get there. It was an unforgettable experience and our family is just so thankful for every one of you!!

Despite everyone being exhausted and not getting home until almost midnight, (oh-and the whole TSA pat down for yours truly. Did you know Desitin causes you to test positive for bomb residue? Makes you feel good about what you're putting on your baby's bum, doesn't it?) the flight home went pretty well. The boys were their usual kind selves.

Poor Papa..

Aaaaand so far since we've been home we've had another baby bat in our kitchen, goats and sheep out in our front yard, tornado warnings and hail to wake up to, and an almost completely grasshopper eaten garden. Ahhhh... there's no place like home. If only Nebraska and Southern California weren't so far away.

Looking forward to Orlando 2016 already!!

*Special THANK YOU to Grandma and Papa for coming along with us and helping SO MUCH in California. You helped make our trip go so much smoother and the kids had so much fun with you.
We appreciate it so much!!

Friday, June 20, 2014

Belated Anniversary

Since we spent the eve of our 9th Wedding Anniversary in the basement of my in-laws house waiting out Tornado Warnings (as we did 3 of the previous 4 nights as well) I didn't get a chance to work on my annual Anniversary blog. Good thing I live by the rule of 'better late than never!'
Reasons Why I Love My Husband: Part 3

He's good at putting babies to sleep.

Lots of babies..

And even when his 'babies' aren't ready to sleep.. he tries to lead by example.

He works hard to provide meals for us,

and takes his job very serious,

no matter what job it is.
Yes,  that is a goat. Yes, he is milking it. Yes, this was totally my idea.
Oh, and our kids might look just a little like him..

He teaches our children how to best sit around

even at 14,000 feet altitude

And he makes a 15 hour camping trip.. well.. a lot more interesting. 
"I'm a talking tent head"
 I know I tease him a lot (trust me.. he has it coming) but he really does do so much for us and I know I don't thank him enough.

Who else would put in a full day's work, then drive a 6 hour round trip to pick up 150 baby chicks for us?

 He paints his little girl's nails whenever she wants,

teaches her about important things like fish,

touching the fish seemed like a good idea.. who knew it would be slimy?
 and is a all-around 

great dad.

There's so much else-he remembers my favorite kind of wine, allows me my American Idol indulgence on Wednesday nights, always ALWAYS thanks me for making supper, tells me I'm beautiful, leaves just the right amount of coffee for me every morning, and even though he broke my brand new Pampered Chef egg cooker the night of our anniversary, I know his attempt at cleaning the kitchen for me was well intentioned. 

 The other night when I was certain a tornado was headed straight for our house, he didn't hesitate (okay, there might have been a slight hesitation and moderate eye roll) to run home and grab my external hard drive and entire computer (since I haven't backed up my pictures for awhile-add that to the to-do list..) in case our home was leveled. And just tonight he rescued me from a tiny baby bat who must have fallen through our chimney.
 I still have the heebie-jeebies.

So just like I posted on Facebook the other night..
"Happy Anniversary JJ! There's no one else I would rather have spent almost every night this week huddled in your parent's basement, taking cover from tornadoes with. Mostly because.. well.. it would be a little awkward to be huddled in your parent's basement with anyone but you.. but also because after 9 years I still kinda like being around you. Most days.. :) love you honey! "

Friday, May 30, 2014

Ella's Run

I've been wanting to post about Ella's Run since.. well.. the night after Ella's Run, but this whole summer break thing/somebody needing something every second of the day thing/washing at least one (or 2) loads of dirty towels every single day thing/everybody staying up playing outside until 10:00pm, plus not even napping thing/the garden needs planting, weeding, the yard needs mowing constantly thing/two weeks of sick kids and I am just so over this hacking all the time thing/I told the boys they couldn't play t-ball because, you know, we can play baseball at home anytime and they are holding me to that because they want to play baseball all.the.time (and it's totally not fair when they beat me because they are big ol cheaters) thing/not getting a single spare minute to myself all day thing.. it's been exhausting. I took all the kids grocery shopping yesterday for the first time and even with my low expectations, I was still surprised. You guys.. it took us 2 hours to get out the door, we were in town for 4 1/2 hours, and we only hit 2 stores and the library. Oye..

Anyways.. Ella's Run. It was awesome. And we are SO thankful for everyone's support. I honestly feel incredibly blessed to have been a part of this experience. I think the most amazing thing to witness was how so many people came together and shared their talents and resources for a goal bigger than themselves. We've always tried to teach our kids about how God gives each person their own set of talents and special gifts and our job is to find out what those are and do good with them. I will admit to putting my own little spin in it a few times.. See boys.. see how mommy isn't very talented at keeping the house clean or the laundry folded and put away? Well, that's okay because God just didn't give me those talents. But He did give me lots of other special talents like.. like.. well. There are other things I'm good at. I'm sure..

Honestly though, to see in action the wide variety of people's talents and the pure goodness of people's hearts was really an unforgettable experience. From the owner of a local meat locker who read our story in the newspaper and called me up one day volunteering to donate all the meat to our Spaghetti Supper, to the bottling company who donated water bottles for the run, to my crafty friends (and some people I didn't even know) who made things for our silent auction/raffle, to businesses donating gift cards, to the 10 year old little girl who called her mom at work adamantly asking her to stop at the store and pick up baking supplies on her way home so she could bake cookies to sell at a garage sell to raise money for Ella and who excitedly ran up to me the next day exclaiming how she did "sooooo good" and handed over $23.75 (LOVE her), to a local newspaper donating advertising space, to the old man with a prothetic leg who hobbled up the driveway to our freewill donation rummage sale and dropped a check in the jar and hobbled back down again without saying a word, to the countless donations and cards we received from friends and family and sometimes complete strangers. Perhaps my most favorite donation was a card from a sweet elderly lady that came in the mail one day. Enclosed was a note saying that she didn't have much to give, but she knew that every little bit helps. Inside was a check for $5. I still tear up today thinking about her generosity and sacrifice and thoughtfulness.  

Isn't that the whole idea? The fact that we don't have to give it all to make a difference. We don't have to single handedly solve the world's problems or fund major projects that impact millions of people. If we all just give what we can, whether it be time or supplies or gifts or talents or money or resources or just plain showing up. It makes a difference. I know I've fallen victim to the excuse of "Well, we don't have that much to give so I'm sure our little contribution won't make much of an impact. I'll just let someone with more money take care of that and make a bigger difference." Let me tell you.. it does make a difference. Whether it's $23.75 or if it's just $5. It makes a difference. 

We have been so humbled by this experience and even just sitting at the Spaghetti Supper and looking around at all the people that came out to support us by eating (I mean, is there even a better way in all the world to support somebody than by eating??) was so awesome. Towards the end, our 'fundraising' became much less about the money and much more about sharing experiences with people. It really does make the hard days much easier-knowing what a supportive community we are part of, even if you all can't be here in person every day to help with the terrible 3 screaming fits of rage. (But if anyone's in the area and wants to stop by...) 

We are constantly looking around for ways we can help and give back and I truly hope that by helping us, we have helped others as well. I hope that the little girl who stayed up late in her pj's baking cookies to sell for Ella always remembers that no matter your age, you can make a difference. I hope that Ella's brothers always feel as proud as they did the day they ran the 5K 'to help my sister' (even though they rode in the golf cart part of the way.. See? CHEATERS) I hope everyone who gave got joy out of giving. And I hope you all know how thankful we are for each and every one of you for making a difference in our lives.
California or BUST!

Saturday, May 10, 2014

CdLS Awareness Day

Today was CdLS Awareness Day. And as I look around on Facebook and enjoy all the photos of people in their awareness shirts or decked out in purple (the official color of CdLS) I can't help but think about how far we've come since we first heard about this day.

Back then I wanted nothing to do with CdLS. Today I clearly see the blessings it has brought to our life.

Back then I didn't want to hear any more about it. Today I write a blog and willingly tell the world about our Ella.

Back then I just wanted it to go away. Today I listen to the giggles of a little girl jumping on the couch and can't think of a better sound.

Back then I couldn't talk to a soul about CdLS or Ella without bursting into tears.

This year couldn't be any different.

In the last week our family has been featured in 2 local newspapers for Ella's Run, the fundraiser we're doing to raise money to go to Conference.

And good grief you guys.. Tomorrow morning a news crew is coming to our house to film a story about us, and on Wednesday we're going LIVE on another station to promote Ella's Run. I know we live in a pretty rural area and it's not like they're flying us to the TODAY show or anything (yet) but still.. This raises some pretty big issues around here. Like 1. Does this mean I should take down the final remaining Christmas decoration on our wall? 2. Should I attempt to finish our half painted living room tonight? and 3. Is it possible to lose 10 pounds before the morning??

In all seriousness though, we have come so far on this journey and are so excited to be raising awareness about CdLS. Being honest about it has opened so many doors and introduced us to so many people we wouldn't otherwise have known. We have been shown love and acceptance and generosity beyond measure. I can't imagine what life would be like if we had stayed alone and scared and unwilling to open up to others. This year I can honestly say I am thankful for CdLS is our lives.

Happy CdLS Awareness Day to all our cuties out there!!

Oh yeah.. I may or may not be posting a link to our video, depending on how big of a fool I make out of myself. (-:

Wednesday, April 23, 2014

The Big Girl Bed

It seems like I've had a lot of 'Wow-look-at-how-amazing-Ella-is-doing' posts lately. The excitement of being able to dress her different kinds of shoes, wear hats, laugh and giggle and play with her in the tub (well.. until it's time to wash her hair at least) watch her walk outside by herself, and see her amazing personality emerge and blossom is so overwhelming. I hope with all my heart that I never make anyone feel bad whose child might not be doing any particular one of these things. It's absolutely true that our kids each develop along their own set of rules, in their own time, and surprise us at every turn. I share Ella's triumphs to offer hope to others who might need it at that time. However.. in an effort to even things out a little I'm now going to share about Ella and her bed. 

Scenario: Ella still sleeps in her crib. 

Problem: Not so little brother Hudson needs the crib. 

Solution: Move Ella to a big girl bed. 

Easy, right? Well, we thought so. We got out the toddler bed and at first Ella seemed to LOVE it. 

There was lots of giggling,

and clapping,

and happy faces. 

Until it was time to actually go to sleep on the bed.

Then there was lots of tears,
and flailing,
and hysterical crying for an hour.
(No I don't have pictures of that. Geez, I'm not a monster, people..)

Needless to say we haven't even tried it again. An hour battle at naptime (or *gasp* bedtime for that matter) is not something I have time or energy to endure every day right now.

However, the toddler bed remains in her room. One could argue that I'm just being lazy and not willing to put forth the hard work necessary to guide Ella with this transition. Or one could more efficiently argue that I am testing the very important scientific theory of selective exposure and therefore slowly over time training Ella's mind to adapt her attitude to accept the favorable evidence while ignoring the unfavorable and helping her overcome the predetermined prejudice she seems to have against the toddler bed.

I'll let you decide.

For now, the bed serves as a cozy tablet-playing nook

just right for watching baby faces.

It is also a perfect step stool for turning the lights off.

And on. And off. And on.

After discovering her in her crib one day when no one had put her there, we even realized the toddler bed is a great ladder for getting into the crib!

Now that Ella knows how to climb in to her bed, it raises the concern of when she will try to climb out of her bed.
Good thing she's far too cautious for that.

Or not..