We have a FOUR Year Old!

If someone would have told me a few years ago that today I'd have a daughter 

who was turning FOUR years old, I would have been ecstatic. 

But what if they would have told me she was still the size of an 18 month old?

What if they would have told me she knows some sign language, but otherwise is practically non verbal?

What if they told me she can't do simple things like feed herself a bowl of cereal or even help dress herself?

What if they said she's still not potty trained?

What if they told me she still sleeps in a crib?

What if they would have described to me the amount of time we would spend at hospitals and doctors offices over the years?

Not to mention the hours and hours of therapy appointments?

What if they would have told me how upside our lives would be turned in the four years we've spent with this girl?

I probably would have been devastated, scared, wanted to run the other direction 

instead of blowing out the candles on her pink polka dot birthday cake. 

Good thing it's not actually like that. 

Don't get me wrong, all those things are true. Ella can't eat a bowl of cereal without assistance, dress herself, or talk much at all. And potty training seems so far out of reach right now. In a lot of ways it's hard to believe she's four years old today. But that's not what she's all about. That's not what I see when I look at her. I see a little girl who has fought to overcome the odds just to be here today. A little girl whose smile lights up the room. A girl who, no, can't speak much with her tongue, but can speak volumes with her eyes. A girl who snuggles in so sweetly when I pull a blanket up onto the couch in the evening. A girl who wrestles and tackles her brothers. A girl who sits in timeouts when she's naughty (up to 4 minutes today Love Bug! Happy Birthday!!) A girl who loves ice cream and M&M's and tic tic tacs. A girl who loves to love and be loved and does it better than anyone I know. 

A FOUR YEAR OLD girl who has turned our lives upside down and placed it back in a better place than it was before. We love you so much Ella Bean and are so glad you came into our lives 4 years ago. 

Here is Ella's Year in Review. Note: This song was made for Ella when she was in the hospital with RSV by a nonprofit organization called Songs of Love. The thought of complete strangers writing, singing and recording a song about my daughter is so touching to me. However, please excuse the cheesiness of the song.. We had to fill out a questionnaire about her likes and hobbies and favorite things to do.. and she was 2 weeks old. So what else to choose but butterflies and daisies, kittens and puppies!

Happy Birthday Ella Girl! We love you so much!!!

A Very Merry Christmas

We want to wish everyone a very Merry Christmas from our family!

Love:

Nolan

Charlie

Ella

Hudson

& Baby

We hope you are able to find the joy in this wonderful season and celebrate with those you love.

- The Watkins -

p.s. and maybe when I'm in my 2nd trimester soon I will have a bit more energy to blog again!! :)

It's the Little Things

In addition to all the 'big' things Ella has been doing lately (putting herself to sleep, walking outside, generally being such a BIG girl) she has been doing so many small things too that sometimes I forget to notice if I don't take a minute to stop and look around. 

First of all, she's gotten much better at feeding herself. As with most things for Ella, it's not like she couldn't feed herself, just moreso that she wouldn't always. And she is SUCH a SLoooOOOOOWWW eater that most the time it's just easier to spoon feed her like a baby than let her take the time to take a bite every 10 minutes on her own. When you have a failure to thrive diagnosis and multiple doctors monitoring her every ounce gained or lost, just getting your child to eat suddenly becomes way more important than how they eat. 

She's a pro at putting the forkful of food in her mouth if we stab something on there for her, but lately she's also gotten better at getting it on herself and even scooping up peas by herself. (Our 6 and 8 year old still struggle with this soooo.. I think she's doing pretty good). She's also gotten a little better at staying in her own chair at meal times instead of sitting on our laps or wandering around the house while getting walk-by spoonfuls of food.

Yes, we're wearing a nightgown. And rain boots.  At lunch time. Big deal.

She's also started holding her own cup and taking her own drinks instead of us holding it for her. This might not sound like a big deal to some of you that my almost 4 year old can hold her own cup, but it really is to us. And again, she's had the ability to do this for awhile, but just like with other things (*ahem.. walking, anyone?) she wouldn't do it until she was sure she could do it without making a mistake or spilling a drop. She's confident enough now that she does it all the time on her own. And all this has led to... her drinking way more on her own.. which has led to 

NO MORE MIRALAX!!! 

*Warning: Poop Talk Ahead*

Ever since Ella was so so sick 3 years ago (3 years?? really???) when she came off the NG tube she got instantly very constipated. I think it had something to do with her getting too many calories through the tube, then cutting back so much it really just messed her up. Through the past 3 years we've managed to cut her dose in half, but every time I would try to cut it down more, she would immediately get backed up again. Then about a month or two ago our whole family got a little stomach bug which wasn't a big deal at all, but since Ella had diarrhea I wasn't giving her MiraLAX (obviously). Every day I would wait on pins and needles to see if she was going to get backed up, MiraLAX in hand, ready to administer at a moment's notice, and every day she would continue going, even after the stomach bug had passed. It's probably been 2 months now that she's been LAX-free. I have no idea why that stomach bug forced her gut back in order, but whoever we got those germs from, THANK YOU! :)

Before I could plan my much anticipated Miralax Burning Party where all us former Miralax moms would gather around a roaring bonfire deep in the woods and dump our unused portions of Polyethylene glycol 3350 into the flames while dancing around chanting, (too much?) another child of mine had to have an xray done for some leg pains he'd been having and the only thing that showed up.. was that he looked backed up. So what did the doctor prescribe? MiraLAX. Because of course...

Anyways, Ella has also been working on being able to help put her clothes on and take them off herself.

 She's not real great at it yet, but she is sure cute trying!

She loves to color and is great at drawing circles. 

(SOOOOO exciting for me since my boys absolutely HATED to color)

And for the girl who formerly refused to wear any kind of accessory on her head, have anything touch her face, or really wear anything that didn't absolutely need to be there.. I'd say she's doing pretty good.

She's really getting the hang of this dress up thing!

check out the heels!

Another thing I mentioned on Facebook, but haven't on here is that Ella has been going to the daycare at MOPS for a few hours every other week and.. LOVING IT! If you don't know how big of a deal this is, consider that Ella has never ever ever in her entire life been left with anyone other than a very close family member. Heck, just a year or so ago the number of people she would allow to touch her could be counted on one hand. When the first MOPS meeting came up and Papa wasn't able to watch her like he did all last year I wasn't even going to go. At the suggestion of a friend though who reassured me I could just keep Ella with me throughout the meeting, I decided at the last minute to go. As I dropped Hudson off in his room, Ella got up and started playing right along with him. She was having so much fun that even though I had never considered leaving her I decided to try it. She cried for a few minutes the first meeting, not at all the second, and by the third after I took her coat off she looked at me and pointed to the door, telling me to get out of there! HA! Now she walks down the hall on her own, turns at the right door, and goes right in to play. I would have NEVER expected her to transition so well to being left with complete strangers and a noisy room full of random children. Every other week I am completely shocked all over again. (Does this mean she might be getting ready to leave me for.. *gasp* school??)

A few other small things are that she figured out how to spit, so we can now brush her teeth with flouride toothpaste more often since she can rinse it out better. And her speech is really improving. Last night I dropped the boys off at CCD and called to ask JJ a question. Ella grabbed the phone and plain as day said "Hi Mom." Melted my heart.. Just before the weather turned so cold and winter-like Ella and Hudson got the gator out and even managed to take it for a little spin. In the past, Ella would have completely freaked out if something like this started to move with her in it, but she really enjoyed trying to make this go and even managed to do it a few times all on her own. She was still a little hesitant, but I'm pretty sure by next summer these two are going to be tearing it up!!

Sleeping Beauty

Since the day Ella was born she's basically always been rocked to sleep. 

Every nap time. Every bed time. Every day.

I'm guilty of this with all my kiddos. I have a hard time just laying them down when they're awake, even though I know you're 'supposed' to. I listen to the experts, hear that babies should learn to soothe themselves to sleep and you should lay them in their cribs before they even act sleepy, then I immediately go and either nurse or rock them to sleep. I can't help it. I'm always astounded when I'm at a friend's house and they just lay their baby down. In their crib. Just like that. Lay them down and leave. It's shocking. (Consequently this loving need to rock my babies to sleep usually ends at around the 9 month age when I'm so sleep deprived and in full blown crazy mom mode from them not being able to put themselves back to sleep in the middle of the night.) But I digress..

So we've always rocked Ella to sleep. It isn't usually that big of a deal. We wait until she's acting super sleepy, rock with her a few minutes (or more), wait a few more minutes until that magic moment when she's good and sleeping heavy, but not too long where she's had enough of a 5 minutes nap and wakes up good to go, then lay her down and all is well. Easy Peasy. At least it used to be that way. This summer Ella started being a real pain (for lack of better description) to put to sleep. She started staying up until 10:00 or 10:30 (past our own bed times!) not falling asleep easily, then when she finally did, would wake up and scream when we tried to lay her in her crib which would result in either more rocking or just giving up and bringing her to our bed. That meant that JJ and I had virtually no time to spend together after the kids went to bed. Neither of us could just relax in the evening and there was no time to get anything extra done without kids around. It got to be frustrating and stressful and one day last August while I was talking to a friend about it she casually asked "What would happen if you just laid her down?" 

What would happen?

WHAT WOULD HAPPEN???

What would happen is... I... I... I don't know. We'd never been able to just let Ella cry it out because of her reflux. She would get SUCH a gassy tummy and it sounded so painful and awful that it would have just been cruel to let her cry for any reason. But she'd mostly grown out of that now. So what would happen? There had been a few instances when I was rocking Ella at nap time and Hudson would start to cry downstairs so I would lay her down prematurely and she did actually put herself to sleep, but only a few times. I always meant to do it more often. Just lay her down. But I always had a reason not to. 'I think she's getting a cold so I'll just rock her to sleep one more time today.' 'We have plans tonight so I really want her to take a good nap.' 'Hudson's sleeping and I don't want her to cry and wake him up.' 'I just don't have the energy to listen to her cry today. Maybe tomorrow.' And on and on. Day after day after day. 

But that afternoon at nap time after my friend left, I decided to take her advice. I read Ella some books, sang her a few songs, rocked a few minutes, and laid her down. And what happened? She fell asleep! But she had done that before. The real test would be at bed time. I dreaded it. I knew it would be awful. But that night we did the same thing. We read, we sang, we rocked, we laid her down. And she was not happy. She screamed and cried. We checked on her. She taught herself to soil her diaper on command. We brought her back down stairs to change her. And back up again. We sang her a few more songs and laid her down. She screamed some more. But I think it actually only went on for about 20 minutes. The next night it was 10. And the next night? We didn't hear a peep after we laid her down.

ARE YOU KIDDING ME??? 

It took three nights to overcome something we had struggled with for three years?

She got to the point where she actually LOVED going to bed. Sometimes she would ask to go to bed as early as 7:00. The extra 3 hours we had in the evening were so refreshing and we were able to get so much accomplished! You would think my house would be spotless, my garden weeded, and my blog less neglected, but I'm sure I've been doing something useful with my time.. I think. 

This is how good Ella got at putting herself to sleep. 

She slept about 30 minutes standing up on a metal folding chair like this.

It also possibly could have been something to do with the fact we found out she had strep throat the next day..

I wish I could say she's kept this whole 'awesome sleeper thing' up over the last few months, but the truth is we've let it slip a little. In fact, as I write this it is 9:30 at night and she is laying on the couch watching babies on her tablet. But in my defense we had an exhaustingly long day and nap time was completely torturous for Ella and Hudson (and mom) today and I'm pretty sure I have PTSD from it all, so we're just gonna let it slide for tonight. We might have to have another sleep-training session soon. And maybe one in the middle of the night too so she would actually stay in her own bed all night? But her bedroom is so close to the boys' I don't want her to wake them up.... ;)

A Little Extra Therapy

I've been wondering for awhile now if Ella might benefit from some extra therapy, in addition to the in-home services she has been getting basically from birth. Ella receives weekly in home speech therapy and twice a month occupational therapy as her main ones, but I had a feeling we could be doing more. I put off calling the Pediatric Therapy place in town all summer, because.. well.. it was summer, but when school started I finally made the call. I was nervous because Ella has always taken such a long time to warm up to people and since crying can give her reflux and an upset tummy I've never wanted our therapists to push her too far. I worried these new therapists wouldn't understand her or would want to push her beyond what I was comfortable. We had our consultation in early September and initially I was only asking for additional Speech Therapy. After our consult the therapists decided they really wanted to see Ella for OT and PT every week as well. At first I wasn't sold on the idea. After Ella started walking our once-weekly in home PT went down to once every 6 months. And now this therapist said we needed weekly again? I was hoping for more of a happy medium between once every 6 months and once every week, but I decided we'd try it.

So far Ella has been doing awesome in Speech and working really hard at trying to make her consonant sounds. Her therapist is so warm and friendly, yet doesn't let Ella get away with the usual tactics that get her off the hook-that sweet smile being one of them. :)
Sorry for the cruddy phone pics

In OT Ella has been doing a great job learning to cut with scissors and gaining fine motor skills.

And after we went a few times I saw that Ella loved the PT time in the big gym and as long as we're there it's not really a big deal to stay an extra half hour. I just have to keep this guy from destroying the place in the meantime..

They have a balance beam that rests on the floor and when Ella pushes her stroller over it, she practically runs across the entire thing without stepping off once.

One of the things the therapists really want Ella to be able to do is walk up stairs without holding onto the railing. Just this last Tuesday I saw her take a step up on this foam stair without holding on to anything for the first time ever. Yay!

We love her therapists there (and the ones that come to our home too!) and they have done a really good job at listening to our concerns and finding creative ways to help Ella. It's like it's their job or something..

Bonus: This place is like a 'free' play-all-day for Hudson.

After I saw how well Ella has been doing here I started to beat myself up a little, thinking maybe I should have started her with extra therapy years ago. Would she be further along by now if I had? Would she be talking? Know more signs? Be more confident? I guess I don't and won't ever know the answer to that, but since Ella has only in the past year or less really started to overcome her stranger anxiety I think we're probably starting this at just the right time for her. 

Don't you think we need one of these in our new basement???

Yes, yes you do..

The next thing I'm hoping Ella might be ready for is a Horse Therapy program in our area as well.

Now just to find an open day in this busy schedule..

Mommy's Helper Too

Not only has Ella been quite the little 'Daddy's Helper' lately, but she also LOVES to help mommy around the house. Every time I try to sneak the broom out to clean up the mess on the floor (which is pretty often with this guy around..)

she is right there beside me, ready to help. 

She loves to 'sweep.'

And especially loves to dump the dustpan into the trash when we're done.

She's also gotten really good at setting the table and loves running back and forth between the kitchen and dining room getting stuff to set out. It's fun to watch her spread the plates around, kindof where they're supposed to go.

And probably my most favorite way she helps me around the house is when she helps me bake. Early on in Ella's diagnosis I never imagined this was something she'd be able to help me do someday. One time, years ago, someone on Facebook posted a picture of their daughter helping them bake banana bread. I stared at that picture and grieved, thinking I would never ever get to experience that with my own daughter. 

I never get tired of saying it (about Ella..) 

I was wrong.

Ella loves to stand on a stool and be right beside me when I bake. She's gotten great at cracking eggs, and she loves to stir things up and make dirty every single utensil she can grab. 

It sounds SO stereotypical, but guess who just might be getting her own broom/dustpan and apron for Christmas???

Daddy's Little Helper

Every once in awhile I find myself comparing Ella to what the boys were doing at her age. I don't mean to. I don't want to. But sometimes the thought just sneaks in. Most of the time I can shoo it away, but every once in awhile I just can't shake it.

That was the case whenever I thought about what the boys were doing with their Daddy at Ella's age. At 3 years old they were his little shadows. As soon as he got home from work they were right by his side, push mowers ready, mud boots on, tool belts strapped, and ready to work. In some ways Ella is the same way. When Daddy gets home from work she runs to him and doesn't want to leave his side either. (They're all traitors..) But the difference with her is that often it's too difficult for him to bring her out to work along side him, at least if he actually wants to get anything done. Either she gets scared at a loud noise (like the lawn mower or tractor), only wants to be held and carried everywhere, or has a meltdown because you might leave her sight for a second. Now JJ spends a LOT of time with Ella, but when he wants to get something done outside she doesn't get to go along. And that makes me sad. Not only is it one more thing she can't do, but it means I'm stuck in the house with the 2 littles. Again.

Well, even after Ella started walking outside on her own on May 19, 2014 (but really.. who's keeping track?) it still wasn't always like she was running all over the yard from dawn to dusk like the boys were at that age. (And actually that's okay.. there's still that whole road-thing) She would walk outside sometimes, but it had to be on her terms. When she was done, she was done. And you were going to hear about it. Every day though, she got a little better at walking outside and more confident chasing her brothers around. She's always been "Daddy's Little Girl," but eventually by the end of the summer she was more than ready to tack on "Daddy's Little Helper" to her title. 

These days if we're outside playing and she sees Daddy working down in the barn, she takes off across the yard, over the driveway and into the barn to 'help.' She's gotten much better about entertaining herself if he's busy, not getting scared of the sound of the saw (riding on the tractor or lawn mower might take some more work) and loves LOVES to 'help' drill and measure.

Throughout the summer I started hearing less 'I'm going outside to work" and more "Ella's coming with me!" I would stand in the doorway and watch as these two headed out the door, tools in hand, ready for their next adventure. No, it isn't exactly what the boys were like at 3 years old. 

But it's still pretty darn sweet.

Walking Outside

The past few months Ella has been making a lot of progress and doing so many new things that I've been wanting to share with you, but haven't had the time. I'm going to break it up into a few posts, but I'll start with something she started right at the beginning of the summer, which I know.. was like 4 months ago, but whatever. 

This was the first summer in my entire life that I was really not looking forward to, actually kindof dreading. Typically I LOVE summer and live for the lazy, laid back days of popsicles and pools and campfires and s'mores. But not this summer. This summer was starting out with a clingy 9 month old who hadn't learned to walk or even crawl yet, and an equally clingy (or maybe even moreso?) 3 year old who had been walking independently for an entire year, yet still refused to do it outside. Since we love to be outside during the summer, even just in the backyard playing baseball with the older boys, that left me with two 'babies' who insisted on being carried everywhere, or at least holding Ella's hand while she walked around the yard. This might not sound all that difficult, but holding the hand of a stumbling toddler, while juggling a 20 pound baby on your hip, who at any moment tires of being held upright and flips upside down and acts like he wants down, but when you set him down screams with all his might to be picked back up again, only to flip back down the instant you pick him back up. Over and over and over, while Ella got frustrated that you were not doing exactly what she wanted you to and that very exact moment so started screaming herself and demanding to be picked up. To say the least, it was exhausting. Match that with 100 degree heat and humidity and just being outside with the two little ones was just plain hard. And not fun at all. And even if I could hold both of them at once, (which I basically did all the time before, but this is summer!) that doesn't leave many hands to do anything like play baseball with, nor would it be very safe.. those boys have a wicked fast ball. It left me feeling sad and a little desperate. I didn't want my older kids' summer to be a dud because I couldn't do anything with them because Ella and Hudson were just too hard to carry them both around everywhere if Ella refused to walk, but it was just so.darn.hard. to go many places or do many things. 

But even with my hesitation, time marched on and summer came nonetheless. The very first official day of summer break came and I was determined that it was going to be a good one. We were outside playing in the beautiful sunshine and I had been lugging Hudson around, walking with Ella while she climbed up and down the stairs, back and forth across the lawn, trying to climb the slide, then holding him more while I pushed her on the swing. Finally I had had enough, so I took her out of the swing and sat him down to give my aching arms a break. Of course immediately Ella seized the opportunity of a empty arm and wanted me to hold her while I pushed Hudson. I must have said no because I remember the tantrum that ensued. It was full of mind-rattling screaming, flailing on the ground and rolling in the grass, then screaming more when she got grass on her hands, then rolling and screaming because who knows.. In the meantime, Hudson was starting to fuss because he actually doesn't like to swing that much (I know!!) while the older boys were begging me to pleeeeease play baseball.. 

This was exactly what I had dreaded for this summer. 

I was feeling so disheartened and needed to just walk away for a minute. I couldn't possibly do this the entire summer. It's the first day of summer and already it's ruined, I thought. The entire summer is going to be miserable and there's nothing I can do about it, I pouted while throwing myself a pity party. I told Ella I would be right back and ran into the house to grab a drink (of water!!). Of course she was having a total meltdown when I left so I went inside, took a few deep breaths and prepared myself to go back out and deal with it. I straightened up and walked outside, expecting to hear the shrill sound of a 3 year old tantrum, only to be surprised to hear silence. What was going on??

I looked where Ella had been when I left her just a minute ago and she wasn't there. What??

Hudson was still swinging, but where was Ella?

I scanned the yard and there she was. Standing by herself. Outside. In the grass. Throwing the ball.

All of a sudden when she realized I wasn't going to help her anymore, she just took off.

She realized she could do it.

She played baseball with her brothers

ran around the yard,

(Insert major panic about her possibly running on the road. She hasn't yet.)

going down her slide,

pushing Hudson in the swing

and probably best of all picking me "flowers"

She ran back and forth from plant to plant bringing me these precious precious gems until I had a handful too full to hold and a heart that was bursting with joy too great to contain.

 This day will probably live on as one of the happiest of my life. I sat there and cried tears of joy and when Daddy got home? She ran down to the truck and met him on the sidewalk to give him a hug.

It has been so fun to watch her run around outside and become more independent this summer.

And my arms are thankful for the slight relief as well!

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! "

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!

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. (-:

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..

Weighted Blankets

Last fall while discussing some of Ella's sensory issues with our OT, she mentioned something to me about weighted blankets and I've been toying with the idea ever since. If you've never heard of a weighted blanket before, basically it's exactly what it sounds like. A blanket with weight in it. Most are made with small plastic beads called poly-pellets that are sewn inside and completely machine washable (think: a bunch of bean bags sewn together). The blankets can be any size, fabric, texture or weight (although they recommend not more than 10-15% of the person's body weight) and are used a lot with kids who have autism. I've heard the blankets can help calm anxiety and provide much need sensory input for kids who need it. 

Last week I finally decided to try my hand at making my own weighted blanket and was originally going to just make one for Ella. However, after thinking about it for awhile I realized a certain older child of mine who has a little more difficulty sitting still and focusing might benefit from one as well. Since I didn't want to single him out and make him feel different, I decided the other boy needed one as well (and since he always complains of being cold I used that as a cop-out as to why he needed one). And naturally since Hudson has decided to claim the title of "World's Worst Sleeper," with much wishful thinking I decided that perhaps if he had a weighted blanket as well maybe it would feel more like I was holding him (the only way he'll sleep good).

Visions of a full night's sleep, restful nap times, reduced temper tantrums, and a calm supper table danced through my head as I sewed these blankets. I finally finished them and I will say.. the kids really like them. Whether its because they feel special that I sewed them their very own blanket or because they are benefitting from the weight-the jury's still out. If you don't look too close they turned out pretty good. Here is what the older boys' look like. 

I made all the blankets about 18"x21" so they would be lap pads (but mostly because I was being cheap and could get away with using 1/4 yard of material for each the front and back that way). The front I used a cotton print and the back is minky-for a little extra touch of sensory texture. They weigh around 2-3 pounds each. I probably should have sewed some sort of strap on them because they seem to amazingly always fall off their laps at suppertime, leading to much squirreling around under the table..

I wish I could say this guy was sleeping through the night and taking longer naps with his blanket, but not so much yet.
Good thing he's cute.

And today at lunch while I was thinking about what to write in this post about these blankets Ella got down from the table, ran to the couch and grabbed her blanket, drug it all the way back to the table, and insisted on sitting with it on her lap.

So apparently she likes it. 

If you like these and think your child would benefit from a weighted blanket, send me a message or let me know.

 A fellow CdLS mom has been making awesome custom ones as a fundraiser to go to Conference. 

I can hook you up.

Walk a mile in Ella's.. boots?

Shoes.

For a long time Ella has refused to wear anything but soft soled shoes. 

It's not for lack of wanting.

Ella's closet

Or opportunity.

basket of shoes by the door

Or choices.

and boots

(Thankfully we have some awesome fashionista friends who like to hand shoes down to us!)

It was entirely from lack of cooperation. The soft soled shoes only thing was okay in the beginning.. They do make some cute ones. But I mean seriously.. have you taken a stroll down the little girl's aisle of shoes lately?? OH the cuteness.. The past 2 years I've tried to avoid that aisle at all costs. Turned the cart around if it was headed that direction, closed my eyes if I saw it approaching. Once in a weak moment I stood and gazed at an end display of Spring Easter shoes. I almost cried. Maybe I did. Ella would NEVER wear any of those shoes and I had no reason to hope she ever would. I was actually looking into patterns to make my own soft soled shoes for when she got older and didn't fit into the kids ones. 

And then one day she started bringing me shoes out of the maybe-someday-she'll-wear-these-but-I-doubt-it basket and wanting me to put them on. 

And she tried them on. And liked them. And wore them around the house. 

And I thought things couldn't possibly get better.

And then she discovered her mud-boots-that-I-thought-would-be-too-small-and-she-would-never-approve-of-because-the-one-day-I-tried-to-put-her-in-tall-boots-for-church-she-spent-the-entire-mass-barefoot. And she was in love with them. And obsessed about them. And wore them everywhere.

And I thought nothing could possibly be as cute as seeing this all day..

And then when I was taking the picture of Ella's closet to write this post we rediscovered Ella's pink cowboy boots. The ones she wore 2 years ago before her shoe relationship fizzled. I thought there was no way they would fit since.. you know.. she wore them 2 years ago. But apparently this girl's feet have barely grown since then. (They're about the same size as Hudson's..)

And then I discovered this jacket. And this dress. 

And you guys.. if Ella actually wears this I think I might die. Really I do.

If you don't hear from me for a few days, someone might want to check on me. 

I'll probably be in cuteness coma.

***Update***

After I had written this I went upstairs to put Hudson down for a nap and what did I walk back to see? While I was gone Daddy had seen the outfit I had out and assumed that was what I wanted her to wear (Well.. yeah.. I did. Buuut...) put it on her, AND painted her nails to match.

Lord, take me now. 

Yes, she has pigtail braids here. Yes, I can die a happy woman.

Dad of the year??

I decided I would be totally fine if we lived in Laura Ingalls time when people wore one dress for an entire week and this was it for Ella. Every single day. I could handle that.

This recent shoe/boot obsession/development is incredibly/obviously exciting to me. But I'm still a little skeptical that Ella will go totally wild and do something crazy like wear flip flops this summer. Don't worry though.. we've got 3 pairs just in case. :)

California Update

I know many of you saw it on Facebook, but a few weeks months ago our boys' school did a fundraiser for our family to help get Ella to California to the CdLS National Conference. The school had approached me asking if they could do a change drive where kids would hit up their unsuspecting parents for spare coins to bring to school to put together in a jar. This type of sabotage by innocent wide eyes would be properly fueled by a competition between the classes and the promise of a pizza party to the class with the highest amount (and of course all in the good natured spirit of giving as well..). I thought it was a great idea- a good way to introduce Ella to the kids she will soon call her peers and help teach them about differences and kindness and giving and helping others. A way to take the first proverbial step into our school system and lay the foundation alongside the people who will all too soon be entrusted to care for her. So Ella and I took a deep breath, strapped on our boots, and stood in front of the entire school one day and talked to all the kids about CdLS. If you would have told me a few years ago I would be doing that I would have laughed (and cried) in your face. We talked about how having CdLS affects Ella and how it makes some things about Ella a little different, but also how she's just a kid like them, a sometimes pesky little sister, who often will just need a little extra help learning and doing things. (No I did not practice my speech in my head nonstop for an entire week. I was totally cool..)

Anyways.. we live in a very small, very rural community. I expected people to send pennies. Maybe a few nickels. I'm not proud of this, but honestly? That's probably what I would have sent. It's a change drive. I tend to take things literally. I would have sent change. The kids could have dug a few tarnished coins out of the bottom of my purse, proudly packed them in their backpacks, and we would have all went about our day. At the very very most I thought maybe the school would have raised a few hundred dollars. Five hundred tops.

Apparently that's not how everyone else took it.

I went in to the assembly the last day of school before Christmas break so I could be given the check. Ella and I stood in front of the entire school again and the principal announced, to the eruption of many cheers, that the 2nd grade had won the contest and raised over $400! (My poor recovering-from-a-tonsillectomy 2nd grader couldn't even be there for the excitement) I'm not sure what I looked like standing up there in front of the entire Elementary School. I hope I looked thankful. And appreciative. But I'm pretty sure I just looked confused. I was certain she made a mistake. The whole school raised over $400, right? (which would have been awesome in itself..) but she went on to say that 2nd place was Kindergarten who raised over $300. *still confused. and then 1st grade who raised over $200.. *huh? The total raised by our very small, very rural school? over $1500.00.

*Shocked.

And completely overwhelmed. I couldn't even speak, I had tears in my eyes the entire day (and right now as I type this.. and months later again as I read over this again), and I was just so grateful. I am absolutely certain we live in the best community EVER. We might not have the nicest weather (oh so many days this winter with -20 to -30, sometimes -50 degree windchill), or the most beautiful scenery (I hear about these things called mountains. And oceans. What are beaches?). We may not live in the wealthiest part of the country (not too many million dollar high rises around here) and definitely not the most populated (our town has... wait for it... 234 people). But I am certain that what we lack in those areas we more than make up for in heart in our small little community.

Over Christmas we continued to be surrounded with love from our amazing family wanting to help-many sacrificing their own Christmas presents and money to put towards our trip. I don't even have words.. Our church and local newspaper wrote up a little article about us and we have had so many donations given and mailed to us from people we either hardly know, or know not at all who just have heard about our trip and want to help us go. Almost weekly we are reminded of our blessings just by opening our mailbox. Thank you THANK YOU everyone!  We are so humbled and reminded that we are here on this earth to help each other. We feel like we have been the receivers of so much love and support-we find ourselves constantly looking around to see where we can be the givers to others in need. This position we're in--this asking for help thing.. I'm not gonna lie- it's definitely not our favorite place to be. But the blog Momastery recently put things in perspective for me. She said:

We Americans are folks who value independence. We really do feel like independence = strong and dependence = weak. Yesterday reminded me that this is some serious bullshit.

Strength is participating fully in life’s rhythms – like being needed and needing. It is being available to help and then being available to be helped. It is taking your turn being the steady shoulder and leaning on another steady shoulder. It is sometimes saying: We Need Help. Because our people need and want to help. That is how we make connections. It’s how we make friendships. We ask people to share their gifts. We allow ourselves to be weak sometimes so that others can be strong.

We might be in a position right now of needing help, but I pray every day that we will be poised and ready when it's our turn to give it away.

Anyways, we are getting super close to our Conference goal. (Would have been there already if it wasn't for that pesky almost $2000 extra dollars for registration fees I somehow miscalculated. Oye..) On our list of things to do:
Reserve hotel rooms: Check
Register for Conference: On my list of things to do today.
Book flight tickets: Ehhhh.. still in the works.
Plan/Organize/Coordinate 5K/Spaghetti Supper/Raffle: Ummmm... any volunteers??

I've been agonizing over dates for the 5K-trying to pick the 'perfect' one. And coming to the obvious conclusion that there is no 'perfect' date. It's looking like the best 2 options are April 12 and May 17. And I keep ping-ponging back and forth between the two. Just as I decide on the April date because it appears as if there's nothing else going on locally that weekend, I remember that the threat of having a foot of snow on the ground that early in the year is a very real possibility. (I was assured that runners don't mind running in the cold. Unfortunately the coordinator of this race most definitely does mind standing in the cold all afternoon.) So then I flip back to May and just as that is sounding great because knee deep snow is less likely (yet still entirely possible I suppose) I remember that although our school's graduation is the week before, there are probably a lot of other area schools with graduations that day. So I go back to April. And look at the calendar and notice that the surrounding weekends are full of other little things requiring substantial planning like Easter, coordinating town Easter egg hunt and stuffing 1000+ Easter eggs, eldest son's 1st Communion, and so on. And the thought of adding a 5K to the mix sends me into a panic. And did anyone else notice how quickly April is coming up?? So I decide.. that's IT! May it is. Until I hear about a local wedding many people will be gone to (see? small town..)... HELP!!

I've already bombarded my crazy-people-I-call-friends-who-do-weird-things-like-run-races-for-fun group with questions the past few weeks so if anyone else wants to chime in (or volunteer to help..) please do! I sort of have this annoying character flaw of being unable to make major decisions without the input of others advice-whether I take it or not, I just like help weighing all the options.

*update since I wrote this. The other day I was talking to someone about the race and describing my predicament with picking a date and she volunteered the idea that I could have it May 18, on Sunday, so it didn't interfere with graduation or the wedding. Oh. Duh! Perfect! (See why I like talking ideas over with people? I can be clueless..) SO unless anyone has any major objections as to why this would be a horrible time to have it, speak now or forever hold your peace. I mean it. FOREVER.

May 18th for a 5K/spaghetti supper sounds great to me! Now who wants to help?? :)