Mommy Swap?

I follow a page on Facebook that is an online special needs magazine called "Parenting Special Needs". Em and I were actually featured in it last year with our Easter story and picture from 2011. But they posted a question that raised quite a thread of controversial opinions. 

Here is what it said:

"You know that show "Wife Swap"? Could you imagine if they did "Special Needs Mother Swap"?... it would be pretty interesting... (not very practical, I know) but, could you imagine? It would make interesting TV and raise a lot of awareness.

Just pretend... how would it work? Would you switch just "Special Needs Moms" or a Special Needs Mom with a Mom that has a certain number of children? Could it be done?"

Of course my first response was that I would be ALL for that, because I encounter so many people on a daily basis that just "don't get it".... Like the nurse for one of Em's specialists that couldn't understand how I could go 8 months+ over the time I was supposed to make her next appointment, I had to explain to her that Em sees no less than 20 specialists, and it is nearly impossible to keep up with who and when we need to see them.... some are every 3 or 4 months.... some every 6, others yearly, some every other year... it's enough to make anyone cRaZy!! I remembered after a bit that as I left the last appointment and tried to make another for 4 months later, they wouldn't let me, they told me I would need to call. I didn't understand this because I was standing right in front of the people I would get on the phone... but it was close to quitting time or whatever! So yeah, if I can't make an appointment that I then can put directly into my phone and later into a planner when I leave, or I don't get a reminder card in the mail that it's time to make an appointment, chances are it's not gonna happen! She still was not very nice, so again I had to sigh to myself after I hung up the phone that she just "didn't get it". Oh and she told me we wouldn't be able to get in to see the doctor until August because of my mistake, which meant that Em would go without one of her vital medications (her growth hormone) for that long. She told me I could try to call the scheduler and get on a cancellation list, or try and see another doctor. So immediately I called the scheduler and she informed me that I didn't need to see the doctor, I could see the nurse practitioner (whom we like better anyway), and she had an opening the following week... Awesome.... so glad I got that nasty guilt trip for nothing! 

So my point is, there needs to be more compassion and understanding for what we as special needs parents go through on a daily basis. But then there are times where I think, "could anyone else really handle this?" Please don't think of me as cocky because I am NOT... for heaven's sake, I barely handle it most of the time! But I have grown accustom to it, I have done it for so long, and it has adapted to us and us to it. There are things I have to do and face that I really wouldn't wish on anyone. Sometimes there are surprises.... sometimes there is devastation. 

Both of these were experienced at an appointment we went to last Friday. And I still don't know why I'm taking this so hard, but I am. We had a routine, yearly appointment with Em's cardiologist. For those that don't know, Em was born with a minor heart defect, called pulmonary valve stinosis, which means the valve that goes from her heart to her lungs is constricted a little bit. So far it is not constricted enough to be problematic and as long as it grew along with her, no intervention would be needed. So they check her, at first it was every 4 months, then every 6... and last year, her doctor decided yearly would be enough because everything was looking good. So this year when we went in a year from the last time we went in, I expected everything to be the same. You see Em faces a lot, but everything she has going on, we have pretty much known about since her first year of life, so anything new that would come up would seem as a shock I suppose. And a shock it certainly was when they told me they found a new problem with Em's heart... her main aortic valve is now constricted, as well as leaking, but it's nothing to be too alarmed about..... uh.... WHAT?! Pretty sure any leaking linked with the heart could be considered bad.... am I right? But no, she assured me that they grade it on a scale of 0-4, and right now she is at a 1+, borderline of a 2.... 3 is when they'd consider medication and 4+ is when they'd consider a laproscopic procedure. All very minor, nothing like open heart surgery. And probably something I wouldn't need to worry about anyway. So why then did I cry the entire way home? Was it just the shock? Was it the unfamiliar? Or was it the possibility that this could be a gateway to whole onslaught of surprises to come... that we may never know all that that missing DNA caused in the big picture of our little girl. Who's to say what could be next?..... and maybe, just maybe, it was all of the above. 

Now I may be worrying over nothing, but it is very likely that this will not be the only surprise we will get in our daughter's health. The truth is, she is at greater risk for a lot of unpleasant things, and that is something we will always have to keep in the back of our minds. I don't like to think about that, especially considering how close we've come to some really unpleasant diagnoses, like hemophilia, bone marrow disease and cancer to name a few. Thankfully none of them panned out though. 

So coming back, could anyone really do what we do? Even the things we consider pretty routine- replacing her g-tube button when it gets yanked out of her stomach, dealing with doctors and medical aspects, which includes an endless amount of paperwork, fighting with the insurance constantly, remembering dosing of all her dozen+ medications she takes daily, carrying her everywhere, as well as lifting her wheelchair in and out of the car.... and having to deal with the fact that you won't always get an adequate parking space to do so. Dealing with the stares, the looks of pity, the comments and questions of those who don't understand how much their words can hurt.... yeah, all that... this is all on a daily basis.

Then there's the other stuff that haunts my nightmares. The fact that a bad cold from a typical kid could be a deadly, nasty RSV for her, that puts her in the intensive care unit on a breathing machine fighting for her life.... and a miracle. The unexplained vomiting of blood that we still never know when is going to hit, and we still don't know why it does. The breathing treatments.... and the one that is the worst for my anxiety- the anaphylactic reactions..... having to carry an epi-pen everywhere we go, giving her countless doses of benadryl in the hopes that we won't have to give her that epi-pen... the outcry and scrambling when a child who has milk all over them is getting too close to her.... the constant worry when she is under someone else's watch, although I trust her teachers and those who help care for her, there is still constant worry. 

This is when I have to take a step back and realize I do a lot. And I do more than I ever realized I was capable of, not because it was my choice, but because I love my daughter and I would do anything for her. I think anyone that is a parent can relate to that though. Special needs parents are really nothing more than parents. All loving parents love their kids, and all loving parents would do anything for their kids..... we just happen to do more for our kids than most. So would you switch places? After thinking on it, I don't think I could. I would worry constantly that she was getting the care that she needs, and really I don't want anyone else to do it. She is mine, and even though I don't always feel like I deserve her, I was meant to be her mother.

The Results Are In....

With a measly total of 34 votes, girls beat out boys by 2 votes (18 to 16).... wish we'd had more people care to vote, but that's just the way it goes. Also I would say I don't count about 3 of those votes since Steve cheated the system ;) 

We were coy about telling people when we were actually finding out since we wouldn't be sharing it until the next day. But at 7 pm we walked into the Dr's office to see what this sweet baby would be. 

The face was actually the first thing we saw :) Made me cry. Em waved to us the first time we saw her on screen, and this time we got "looked" at

Little legs crossed.... had me worried for just a sec that we wouldn't get a peek at the "goods" ;) But low and behold... 

No mistaking! 

Y'all were wrong.... just saying!

Outside the dr.'s office after the ultrasound..... I even wore my blue shirt!


So as I mentioned before, we waited until the next day to let everyone know what we found out. My cousin Alexis (2 months older than me) is also expecting and is just a week or two behind me. She also found out what she was having the next day.... which is why we waited, so that we could do a fun reveal together. Alexis came up with the idea to fill a black garbage bag with either pink or blue balloons and release them at the same time with the family gathered around. Only problem was that Lexi's appointment was kind of late and we didn't want the reveal to be really late, so I said that I would buy the balloons after my appointment. I knew the color I needed and then just got 5 of each for Alexis. I put all of the balloons in the garbage sacks before we headed over to my grandparents, so that everything would be all ready. I put the 2 for Lexi in the storage room of the basement and told her that I had marked the one with blue balloons with a small marker mark on the knot of the tie so that she wouldn't have to try and open them to know which was which. And the rest is history...

Steve posted this picture on my Facebook wall shortly after with the caption that said, "Emarie was right!" Because just the day before when I was getting her up in the morning I had asked her if she thought she was going to have a baby brother... or, but before I could finish, she very boldly and clearly said, "I do!" So she knew it was a brother all along! 

Someone had also asked in a comment on Facebook on the above picture why we were releasing balloons, and one of my dear friends (an affected young adult of ch18 actually) stated that she thought we were doing it for my sister..... how sweet is that? And I didn't even think of that! Even more special because my cousin too has lost a sibling to a car wreck, her brother Brooks. 

Blue balloons all around! We will have 2 baby boys only a couple weeks apart! So fun, especially since we live so close to each other, and grew up together ourselves! And NO the pregnancies were not planned.... do people really realize what they are actually asking when they ask this??! And neither of us knew what were in the other's bags! So it was really fun!

And here's the video of the whole thing. And I must feel the need to defend myself here because I got so frustrated that mine didn't come out at the same time.... plus the hormones (I suggest turning the sound way down)! Haha!

I have already bought some clothes of course! Actually the first thing I bought was from some generous Kohl's cash that one of my fellow ch18 mom's sent to me (she lives in Canada and just went shopping there when they were visiting the states recently, and knew that she wouldn't use it before it expired without having one near her).... but seriously, how lucky am I?! Unfortunately they expired before we would find out, so I bought myself some maternity jeans and a maternity cami for layering (since all my regular ones are not working out too well anymore!) and then a generic layette set. But the day after we found out, I took the layette back and got one that screamed a little more boy than yellow ducks ;) 

I have since bought this little number online to save on some shipping for a dress I got for me :) It isn't here yet, but here's what it looks like... and boy am I excited for this one!

Now who says shopping for boys is no fun??!

And here's the most recent belly shot of me. Taken between 16 and 17 weeks on Father's Day

And can't go without adding a picture of the the whole reason we stopped to take pictures in the first place! 

Em and her wonderful daddy! 

Our Photography Class

*Play song, "Sunday Morning" with this post

Steve and I took a 5 week photography class that just finished up a couple weeks ago. It was just a community course to teach those who buy DSLR cameras how to use them. We of course read our owner's manuals, see things online and we both took our share of photography courses in high school and college... but still, there is always things to learn! Especially with all the new technology coming to light!

We had assignments each week when we learned something new, they weren't required, but we got rewarded if we turned them in (by email) each week. Our instructor showed them in slideshows at the beginning of class each week.... sadly we only made it on time for one of these though... so we never really got to hear what he had to say about our pictures (it was tough getting Em to a babysitter and then to the class on time at 6:30 when Steve wouldn't get home from work until after 5:45 each time! And try to eat dinner before too!). 

All in all, we had a lot of fun, and here's a few examples of the photos we captured for each week's assignment. Oh and it is important to know that most of these photos were also edited with Photoshop, but were not turned in this way!

Week 1- Shutter Speed

Alisha's Pictures

Fast shutter. Set at 1/2000, camera was on full manual, but focus was automatic

 This is the panning shot. Shutter set at 1/25, and tracked the movement as she was pushed by her daddy. We do have an image stabilization lens and I'm not sure how well a shot like this would work without it!

Slow shutter shot. Shutter set at 15 seconds. This was taken using a tripod (not possible without the camera sitting on something stable), 2 second delay as well, so that me pushing the button didn't cause any shake. This is taken on the overpass of Carterville Road crossing over University Parkway (facing South), it was around 6 pm (before DL savings).

Steve's Pictures

Shutter set at 1/2500

Shutter set at 20 seconds

Week 2- Aperture

Alisha's Pictures

 Shallow Focus or Large Aperture. F/1.4 (largest opening that our portrait lens has, largest that most lenses go), automatic focus, automatic shutter.

Small Aperture, camera set at F/22, automatic focus and shutter, custom white balance. Taken up Provo Canyon, past Sundance, right after the checkpoint (at the point where they stop plowing in winter). 

Steve's Pictures

Shallow focus of Steve's, set at f/1.4

f/22

Week 3- Perspective

Only trick here is that I was holding a little miniature Prius in my hand right in front of the camera.


And Steve's picture

And yes that's my leg...


These were our rewards for turning in our assignments :) Between the 2 of us, I'd say it was around $50 worth of stuff for free! Almost made one class free!

That's 4 8x10 high quality prints and 2 photo books!

All in all, we had a lot of fun practicing and can't wait to go to the intermediate class! 

The Day O' Love!

*Play song, "Be Mine" for this post

First off, a little Valentine message from Em ;)

And if you don't know by now.... change the view from 320p to 720 HD and full screen for best viewing!

I never really liked Valentine's Day growing up. When I was younger, it was a day of embarrassment.... you know? Wanting to give a Valentine to somebody you had a crush on without risking rejection or humiliation! In high school it was even worse, because even if you had a boyfriend... well, let's just say that high school boys are not always smart at remembering or doing things right! 

Thanks to my husband though, he changed my feelings on the day. He has always been good to spoil and surprise me each year :) And it isn't always elaborate, but it is always special (like last year)! 

But this year he did not fail to impress, and I have to say, it was a bit elaborate :)

He had asked a few weeks ago if he thought I could get a babysitter for Em on V-day, which was a bit surprising since we don't usually like to go out on Valentine's because it's always crazy! But he assured me that it was already taken care of and we wouldn't have to worry about a long wait..... hmmm. The next day he told me that he'd made arrangements for Em and that I would have to wait for the day to find out what we were doing..... A few days before though, I at least asked him what I should wear, since a girl's got to be prepared! He told me that I should probably dress nice like I was going to a wedding reception.... I guess I should have seen this as a hint, but I didn't! 

So, finally the day came, and I had worked tirelessly ;) to put this together the night before

Trail of hearts outside the bedroom door (first thing he saw when he got up that morning)

 Leading all the way to the table where his present sat... it was a new iPod dock/clock radio since our old one is now "slow" (at least 9 mins slow!) and won't charge the newer iPods

I cut out 8 hearts to represent the amount of Valentine's Steve and I have shared as a married couple. I also wrote on each eight reasons that I love him.... of course I love him for a million and one, but this was fun! And no, this isn't something I found on Pinterest, but something I thought up all by myself that night when I looked at all the wrapping paper I would be throwing away ;) 

I also made breakfast that morning, cinnamon roll pancakes, source here (though my modification would be to add 1-2 tablespoons of milk to the cinnamon mixture if you don't want to explode your poor honey bear trying to squeeze it out!) and bacon! It was pretty good! Oh yeah, and I also finally defrosted the ice maker that night (hadn't done it since the power had been cut on our fridge while we were in Sedona), and trust me this was a good gift!

And then we went about our regular weekly schedule, school, work, etc. And after we returned home, I commenced getting ready, and while that was happening Steve informed me that I was getting some FB notifications and brought the phone into me.... and I saw this:

With the caption, "How do you feel about prime rib and shrimp cocktail?"

This dinner was held at a reception center in Payson.... so that's why there was need for dressing like going to a wedding ;) The grounds were gorgeous, just wish it had been light enough to get some pictures.... next time though! ;) The food was to die for! And we met some nice people! That was actually the funny part- when we got there and sat at our table (we were a little early), Steve was realizing we'd have to share a table with people we didn't know (they were set for 8, so 4 couples).... those of you that don't know him real well... well, he's a little shy, quite the opposite of me! But hey, you know what they say? Opposites attract! But we did have fun getting to know the other couples we sat with and it was an all around pleasant evening! The 12 year old boy playing the piano was a wonder! He normally plays for the Chef's Table in Orem and will be touring in Europe in the summer..... WOW!

Picture of us at dinner.... not the best, but that's what happens when you take a self picture!

It was a five course dinner- first a really good salad and rolls, then shrimp cocktail, then the 2 course entree, raspberry chicken and prime rib with glazed baby carrots and garlic mashed potatoes. And of course an amazing dessert plate! 4 different desserts to share with your love.... most of which I don't know the name of! Too much to finish, so we were able to bring it home and we're still working on the tuxedo cake with chocolate gnash! 

This cake started out huge!

When we came home, we finished off the night watching the latest in the Twilight saga, Breaking Dawn.... part 1 (Steve was thrilled ;) It was a wonderfully perfect evening! Thanks to Steve's brother Cory for watching Em for us!

Ah and Em, I should also mention that she as well makes Valentine's a lot more fun for me! We had a lot of fun making her Valentine's for school this year thanks to Pinterest!

Though I did opt to do them a little differently since the ones shown on Pinterest were 4x6 prints and I thought that might look a bit tacky for her to take Valentines that would about 3x's the size of her classmates! So I used the photo site from Walmart and chose their kid's valentine cut aparts and ended up paying $0.28 for 3.... not much more than your run of the mill box of Valentine's you'd get from the store, and SOo much cuter! What do you think? 

I sure know one little guy really loved them! 

Yup, that would be Em's alleged boyfriend, "J". He almost gave her her first kiss that day too! And his mom assured me that she's all he talks about and even says he loves her.... ah, puppy love ;) Gotta admit, didn't expect this for my girl.... at least not yet! But he is a cutie, just might have to talk with him about kissing! 

Here's a few more pictures from Em's Valentine party at school

 Giving her Valentine gift to one of her teachers, Miss Kirsten. Em picked out these darling boxes of chocolate truffles herself!

 My cute love bug all ready for her portfolio picture!

 Em with a few of the girlies she's really good friends with (all of them entered preschool around the same time last year and stayed in the same class.... it's been good for all of them!). 

Em getting ready to receive some Valentines!

At home, before Steve and I left to go out, we gave Em her Valentine gift.... which was some furniture for her dollhouse she got from my dad for Christmas! And boy, the look on her face when I brought them out of their hiding place was just priceless! Wish I'd gotten a picture... but we got pictures later that night before we put her to bed :)

Full dollhouse now! I was able to score the kitchen with Em's birthday money from my grandpa and grandma Wilde.... then she got the bathroom, parent's room and nursery for Valentine's (we're still on the hunt for the Family Room, so if you see one let me know please!), but you gotta have furniture for a dollhouse, right?! Especially for teaching some very important skills! We play with it together everyday, embedding vocabulary, play skills, and life skills while we do! I bet Em is so glad to have a developmental specialist as her mom ;) 

I should also mention that she kinda, maybe got this for Valentine's day as well.... wasn't really meant to be a Valentine present, but it came in the mail on V-Day, and isn't it SOo cute?? For those of you who don't know, it is a cuter version of the infinity backpack for her g-tube gear- so it holds the bag of formula, the pump and all the tubing, and is so much more stylish than the ones you can get through the insurance! If you want one, go here to their facebook page :) 

And Thursday night her grandma (Steve's mom) embroidered her name on it while she watched her for us so we could go to our photography class (more on that later)!

Isn't she awesome?? She watches our kid for us AND embroiders the backpack, and she even modified a cuter pillowcase for her wedge! Thanks grandma Peters!

And just for fun, here's a little timeline of Em on all the Valentine's that she's been around for :)

2008

A little less than 2 months old

2009

Just shy of 14 months

2010

2 years

2011

3 years

And 2012

4 years (yes that is the same shirt and shoes from last year, new skirt though! Gotta take advantage when your child doesn't grow like others!)

Hope everyone else had a lovely Valentine's day!

Birthday Trip!

*Play song, 'Stars and Boulevards' with this post

Steve yet again did not fail to impress for my birthday! Just like last year, he took me to one of my favorite places, Steamboat Springs Colorado... but this time we stayed in the cutest little place- a bunker house on a ranch, so secluded and quiet.... at night it was pitch black and all we could see, as we relaxed in our own private hot tub, was the sky..... and you know, you can't really appreciate the beauty of the universe until you are in a place that is dark enough to see every star in the sky.

It was perfection at it's best. 

But true to form, Em did what she does best on a trip and that was get sick and vomit non-stop. But, we've learned our lesson from so many past experiences, so we were overly prepared and didn't let anything stop us (neither did Emarie) from having the fun that we all needed!

First, we had a quick stop off at the Dinosaur Museum in Vernal- also a place that holds a lot of memories for me. 

 Fossil Find

 See Emarie's look of "YIKES!" 

 And yeah, I know this one has way too much lens flair, but I thought we had to document the fact that she did not like being so close to this thing! She would not tear her eyes away from it, and can't say I blame her (didn't realize they were so big!), and I loved Steve's comment when we saw it, "bet those things stunk...... a lot!"   I'm sure they did.... I'm sure they did.

 She was starting to realize at this point that nothing was real..... or at least not alive!

 Just love the look on her face here!

 "Ok guys, that's enough!' (FYI, I think she's never looked more like me in these couple of pictures!)

 "Uhhh, what's that in the water?? Looks like it could swallow me whole!"

"Wow!"

Several hours later, a look at our bunker house

 Yeah, she loved it here! 

Too cute, am I right?!

I got to enjoy hot breakfast every morning!

And Em (when not feeling the best) enjoying her iPhone *post to come on this iPhone very soon!

Yeah, we were pretty lucky!

The view

I know it doesn't look like it, but Em did enjoy the hot tub! And don't worry, we turned it down!

Steve wanted to play photographer this weekend.... actually it was a compromise for the boots I wanted to buy myself (since I've never spent that much on a pair of shoes since we've been married!), so I allowed him to take a few pictures of me in my boots and he of course went a little overboard... but I promised I'd post a few as long as I could pick them (he chose the ones he posted on facebook)

 I do love these boots!

 These do remind me though, that I still need to loose some pounds!

The ranch had several dogs about the property and they were so fun (except when they tried to jump in the hot tub!), so of course this one had to come by when we were outside :)

What would a good photo shoot be without the cutest girl in the world though??

We also went back to the same Smoke House we went to last year.

It was a bit cold that night!

 She was fascinated with her mittens.... which I'm glad! I was afraid she'd pull them off!

 The pig outside the smoke house

 Was using the little camera while we were in town, so pictures aren't as great... this one being too dark, but I love the smile on her face anyway!

And before we left the next day, we got a few more pictures of the cutest girl in the world!

 Oh man has she gotten expressive!

Ok, now behind the scenes, in order to get her to smile I had one of her favorite things in the world...... did you guess it??

And true to fashion, I had to let her hold her beloved Rapunzel for a few!

 Ok, this one was just too funny, because it looks like she is trying to eat that weed that's in front of her from the picture standpoint, when in reality it was quite a ways in front of her, so I'm not sure what she was doing!

Like I said, the girl's got some expression!

 Bye, bye Colorado! See you again next year!

And hello again to Utah!

Yup, husband did good!