My Little Gymnast

I don't know where the idea to enroll Ella in gymnastics came from exactly. Maybe it was the fact that she is super freakishly flexible and has loved to hang upside down like a possum ever since she was a baby. Or maybe it was because my favorite blog writer's daughter (who has Down Syndrome) was in gymnastics last year and gave me hope that Ella could do something 'typical' too. Possibly it was because one of my friends has her daughters enrolled in classes and told me how much they loved it. Maybe it was because I wanted to provide her with any available 'therapy' to help her gain more strength and balance. Or maybe I wanted to prepare her for school a little, by giving her the opportunity to be around other adults and kids and listen to instructions from someone other than me. Orrrr perhaps it was really the underlying issue that once upon a time there was a little girl who wanted desperately as a child to be a gymnast and despite many pleas and arguments, alas she never got the opportunity to take classes (no hard feelings mom.. well, at least not many) so now she is trying to live vicariously through her young (only) daughter by enrolling her in a gymnastics tumbling class at 3 years old?? 

Ehhhh.. whatever the reason is, here we are.

Last week Ella started her very first gymnastics class.. and I gotta be honest, I was a little nervous about how everything would go.

The week before classes started I made sure to get in contact with the teacher and explain to her how Ella rarely leaves my side and probably won't go out on the mats without me.

I told her how she doesn't let strangers touch her and can get very anxious in new situations.

I warned her that she might not understand everything she's supposed to do.

And probably won't follow instructions very well. 

Oh.

My former friend gently suggested to the teacher afterwards that maybe Ella wasn't the one with the problem letting go... 

Needless to say she LOVED her first class. 

When Ella was first diagnosed with CdLS, every hope I had for her future was crushed. 

Every dream I had died.

I couldn't possibly imagine what her life would be like. 

I couldn't possibly have imagined this. 

Bubbles for Ellie

Some of you may have seen my Facebook post about Ella's sweet friend Ellie, who passed away unexpectedly last Sunday. We have been broken hearted this week as we remember this little girl, pray for her wonderful family, and struggle with the 'whys' of this situation. Ellie had a dual diagnosis of CdLS and a rare genetic disorder called Trisomy 4p. Ellie's mom first emailed me a few months ago to tell me she had found my blog after googling 'CdLS' when her doctors first brought it up as a possible diagnosis for Ellie. She wanted to thank me for writing it and tell me how it had helped her through some hard times. We connected over Facebook and our blogs and as I learned more about their family, I was soon humbled that she thought I was the inspiring one. A more beautiful, strong and faith-filled family I am sure exists nowhere. I have loved following Ellie's journey and was overjoyed when Ellie's family moved across the country just to be neighbors with us! Okay.. maybe they live 2 hours away, and possibly it was moreso because her dad got a job there than it was to be closer to our family, but still. 

About a month and a half ago there was a CdLS family gathering in Lincoln. We packed up the kiddos and headed south, spending the day connecting with other CdLS families, swapping stories and sharing laughs. To our delight, Ellie and her mom were able to come as well and we got to meet them for the first time face to face, although they are some of those people that we already felt like we had known our entire lives.. What a fun experience it was to finally meet someone who had previously only heard of us through the blog. What a humbling thought that I've always said if I can impact just one person's life with our story, then it was all worth it. What a joy to actually meet one of those people. We had a fun afternoon chatting and visiting and making plans to get together with the whole family soon. Little did we know we wouldn't have that opportunity this side of Heaven.

Here is a part of Ellie's story:

Ellie Jane Murray

2013 ~ 2014

Our sweet angel, Ellie Jane Murray, returned to her Heavenly Father on Sunday, Aug. 31, after 15 months of a beautiful but challenging life. She was born May 16, 2013, in American Fork, UT, to Scott Aaron and Rachel Hale Murray.

Diagnosed with Trisomy 4p, a rare chromosomal disorder, Ellie faced a life of physical challenges, but she fought fiercely to overcome her trials and amazed all with what she accomplished. She had a happy disposition, big smiles and a spirit that radiated and put life in perspective for those close to her. People who interacted with Ellie wanted to be better because of knowing her and feeling her spirit. She was loved deeply by her brothers and sister, her parents, grandparents and extended family members. Her mother, father, and Grandma Nancy considered it a privilege and blessing to provide her with around-the-clock care throughout her life.

Sometimes people are afraid to ask, and sometimes people do ask what Ella's future looks like. How long do people with CdLS live? What's the life expectancy? Well, while the literature would tell you that the life expectancy for someone with CdLS technically isn't any shorter than anyone else, and there are those that go on to live well into adulthood, I know from personal experience that there are many many kiddos we lose far too soon. There are a host of complications that just 'could' go wrong with our kids. I grieve every time I hear of another CdLS child gaining their angel wings but this one hits a little closer to home. 

Ellie LOVED bubbles, so this afternoon we are spending some time together, blowing bubbles in her honor. No one knows how many days we or our loved ones have on this earth. We don't know when it might be our last day, genetic syndrome or not. And we definitely can't spend every day worrying about what could happen. But today we are making the most of the time we do have with each other. Spending time together, loving each other, serving each other, and blowing bubbles for Ellie.

If you want to help this family with the unexpected funeral costs and medical expenses there is a great fundraiser going on right now at
 https://www.facebook.com/elliesauction

There are so many awesome raffle items for local (Utah) and non local people and a way to pay through paypal. All the proceeds will go to this amazing family. 

I hate school

I know I could write a positive, uplifting post about the first day of school, full of hopes and aspirations for the upcoming school year. I could say things about how proud I am of the boys they're becoming. About how fast the years have gone and how excited I am to see them grow and develop. About all the things they're going to learn and experience this year. But what I really want to do is sit and cry and scream, "I don't WANT them to go to schooooooool!!!!" Since I don't officially have a 2 year old in the house right now, I will gladly fill in for the moment and lay kicking and screaming and wailing on the floor "I HATE SCHOOL!!!!!!" 

Okay.. That feels better. But back to my almost 30 year old self isn't much better.. I still hate back to school. I love them being home all summer. I love the carefree, laid back unstructured days. I love the generous family time, the memories of camping and fishing and swimming that we made. I don't want them to end.

I think the big reason I struggle with back to school so much is that instead of seeing it as 

"The first day of school" (contrary to the sign on our front porch..)

I see it as "The last days of summer." I know that this summer, with my kids being this age will never come again. Never again will I have 8 and 6 year old boys, a 3 year old girl and a 1 year old baby. Never again will they play together the same as this summer. Never again will they ride their bikes the same or swing the same or play in the tree house the same. It's over. Next summer will be different. There might be some things that are better. There might be some things that are harder. But one thing is for sure. This particular summer will never come again. Ever. That's really hard for me. 

I remember reading once that we celebrate so many '1st' milestones. First foods, first steps, first words, first day of school, but there are so many 'lasts' that we don't celebrate, simply because we don't realize they're the last. Like that toddler book that you feel like you've read 100 bagillion times. Someday you'll discover it hidden under a pile of books and wonder how long it's been since you read it. You'll realize it's been years. When was the 'last' time you read it? If you had realized it was the last time would you have read it differently? With more voices and enthusiasm instead of merely reciting the lines from memory with your eyes shut? What about the 'last' time you rocked your baby to sleep? The 'last' time you sang them a good night song? The 'last' time you woke up to a midnight feeding? When will be the 'last' time you push them in a swing? If you knew it was the last would you push a little higher? Give a few more under-dogs? When will be the 'last' time they cuddle up in your lap and tell you they love you? I guarantee when these boys are in high school they probably won't be sitting on my lap, so when will the last time they do that be? Will I know it's the last time? Probably not.

This 'last days of summer' is the one thing I  know is the 'last' of. A new school year brings so many changes and before I know it they'll be yet another year older again. I know I can't spend my days wondering when every hug, every book, every thing will be their last. I know it's a good thing we don't know the lasts of everything. My heart already broke into a million tiny pieces this morning when I had to drop my kiddos off at school. I just couldn't go through life if it had to break like that every day. 

Last night as I snuggled with the boys on the couch we finished reading the last page of Little House in the Big Woods. In it, Laura is listening to Pa play the fiddle and sing about the days of long ago, and she thinks to herself that "This is now." She realizes that "They could not be forgotten. Because now is now. It can never be a long time ago."

So as sad as I am to send them off the school, as much as I want to throw a giant tantrum and keep them small and hold them close to me forever, I know I can't. I know it's not possible to know when the lasts of things will be. And I can't spend my life wishing for days gone by. 

This is now. And it's a pretty darn good now. 

I hear my boys getting off the bus. I'm off to spend some 'now' with them. :)

First Birthday Comparisons

This is SOOOOO cliche.. but really.

HOW HAS IT BEEN A YEAR ALREADY???

It seems like just yesterday I was wondering how in the world I was going to handle 4 kids, how Ella would ever possibly adjust to not being the center of the universe (*snort.. I thought that would change. silly me), how I would feel about having a typical child after Ella, having nightmares about spinal needles breaking off in my back.. 

And now I cannot imagine life without our little Hudsy Hoo, our Snooder Pud, Hooder, Herb, Pud

 (The kid has a lot of nick names..) 

He makes us laugh every day with his silly faces

crazy antics

and general mischief.

Today is your FIRST BIRTHDAY Hudson! We are all very excited for you, but this week I can't help but contemplate a little on the differences between this first birthday and our first child's first birthday and.. well, I've come up with a few comparisons. 

Differences between the 1st birthdays of our first and fourth child

First Child-3 Months before 1st Birthday: Party Planning begins. Pour through magazines and books, spend every waking hour on Pinterest in search of the perfect party theme.

Fourth Child-3 Months before 1st Birthday: Unsure of what month it is. Try not to drown in laundry.

First Child 2 Months before 1st Birthday: Finalize theme, colors, coordinating invitations, etc.

Fourth Child 2 Months before 1st Birthday: Unsure of what day it is. Just. Keep. Folding.

First Child 1 Month before 1st Birthday: Send out personalized hand addressed invitations complete with RSVP's

Fourth Child 1 Month before 1st Birthday: Is it really 2014 already??

First Child 1 week before 1st Birthday: Begin cleaning house top to bottom making sure every surface shines.

Fourth Child 1 week before 1st Birthday: Realize child's birthday is this week. House is a disaster. Maybe we could have a party at Grandma's?

First Child 5 days before party: Buy coordinating themed plates, forks, cups, napkins, balloons, streamers, banners, table cloths..

Fourth Child 5 days before party: I hope Grandma has a few leftover 4th of July plates. If not? Ehhhh.. The kids eat with their fingers all the time anyways.

First Child 1 day before party: Pose birthday boy for adorable 1st Birthday photo shoot, complete with baby fat roll naked goodness and head to toe chocolate cake smashing.

Fourth Child 1 day before party: Baby and almost entire family contracts Hand Foot and Mouth Disease. Flaming red bumpy rash covers entire baby fat roll naked goodness. Mommy spends 27 hours a day comforting achey children. "Party" and photo shoot cancelled.

First Child day of party: Cake is baked, house is scrubbed, banners made, balloons blown up.

Fourth Child day of party: Family says its okay to come around them. Husband promises to call all family members. Party back on.

First Child 3 hours before party: Make homemade vanilla buttercream frosting, scraping an actual vanilla bean for the vanilla flavoring (yes I actually did this..)

Fourth Child 3 hours before party: Buy my first ever can of store-bought frosting.

First Child 1 hour before party: Sit back to admire marvelous handiwork.

Fourth Child 1 hour before party: Return home (with a fever) and a plan of action to get cake decorated in record time. Discover husband didn't tell anybody about party. Family members have dispersed. Party cancelled again. Choice words seethe through throbbing head.

First Child Party Time: Friends and Family gather from around the globe to celebrate the miraculous first year of life for this glorious child.

Fourth Child Party Time: Meager gathering with a few family members who just happen to be around that day. 

First Child Party Time: Child is surrounded with gifts galore from mom & dad, aunts and uncles, grandparents, first cousin's best friend's beautician's neighbors..

Fourth Child Party Time: Ehhh.. Just give him some tissue paper to tear up.

Hudson, even though you didn't get an elaborately themed party this year, or even really much of a party at all, and I may have just grabbed your present off the counter and thrown some used tissue paper around it without even taping it so you could 'unwrap' it, and we're probably going to go get groceries this evening because.. let's face it- we're out of milk. And bread. And cheese.. (Hey, we've had contagious diseases all week.) But that definitely doesn't mean we love you any less! You have made this past year so much fun and we can't wait to see how much you change and grow in the next year. Let's just try to keep the 911 calls to a minimum.. 

HAPPY BIRTHDAY!!

CALIFORNIA DREAMIN'

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!!

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.

 EWWWWWW.....

 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! "