The Art of Taking Family Pictures

First off, I have to mention that this is our 200th post to this blog.  Woot woot!! 

I will celebrate by eating 200 M&M's today. 

Let's all hope and pray that I actually don't, but somedays my chocolate consumption reaches dangerous levels, especially when I have cute St. Patrick's Day M&M's sitting on my kitchen table.

Second off, it's finally March.  Hallelujah! Is it just me or does January AND February draaaaaaaaggggg?

Now back to the title of this post, "The Art of Taking Family Pictures".  Do you ever look at other families' pictures and think, "They just take the best pictures ever" or "They are so perfect, why can't my family pictures look that good?"  Well, I NEVER think that...I was just wondering if you do. 

Family pictures are the bane of my existence.  You can guarantee at least two fights will ensue between Cody and me...and a couple weeks ago, we did not disappoint.

I never hire a photographer because I end up feeling like I wasted my money.  We're lucky if we get one good picture out of the whole thing and even that good picture has to be edited a gazillion times.

So a couple weeks ago, I decided it was time for a new family picture.  I was going to be a guest blogger on This Little Miggy and wanted to attempt to get a good picture of Jett.  Cody's mom was in town and I assigned her to be our photographer.  She was SUCH a good sport and probably a good referee too (between me and Cody).

Ladies?  When you take family pictures, do you pick out what your husband will wear?  Apparently that is a crime in our household.  I had picked out Cody's clothes and laid them nicely on the bed for him to change into.  When he got home from school, he tried to convince me that his wrinkly shirt and dirty jeans that he was wearing were perfect for our family photo. 

Cue Fight #1

Well, I won the fight and he changed clothes, but was super bitter about it....which in turn, made me super bitter about everything.  In addition to all of this going on, Jett was experiencing some pretty severe chorea (uncontrolled movements and muscle contractions) and was not happy about it.  This painted the perfect scenario for some great family pictures, obviously.  

We arrived at our destination.  Here in Omaha exists a wonderful building that I am OBSESSED with...the Bancroft Street Market.  The entire building is covered in graffiti and I love it.  If it wasn't in such a ghetto area, I would love to own it someday and turn it into a fitness studio. I thought the colorful exterior walls would be a great backdrop for our photos.

From start to finish, pictures probably took about 5 minutes.

Between the incessant wind blowing in our faces and our oh-so-lovely attitudes, that is all we could handle.  Below are some pictures for you to enjoy.  The next time you think that someone else's family pictures always turn out perfect, just remember us and you'll feel better about life.

I'm pretty sure in this pic I had just told Cody to button his shirt.

Ladies...this is a NO-NO to tell your husband. 

Me=Fake Smile

Cody=Not faking anything, he's mad

More fake smiles

I'm telling Jett, "This is torture, isn't it?"

Cue Fight #2...Cody thought it would be hilarious to pose in front of this sign.  If you know us well, you know that we (out of anyone) like to see the humor in everything.  On a normal day, I probably would have laughed.  Not today...my face says it all.

Sometimes your pants just fall down.

Sometimes you fart in dad's hands.

And then sometimes you just need to be distracted in between pictures.

By the end, we were a little more cheery thanks to Jett...and we got ONE good picture.  Phew!  

Googling=Bad, Blogging=Good

In the medical world, you'll often hear doctors tell their patients to never use Google.  

It's true, you shouldn't.

And I'm bad, because I did.

Upon hearing Jett's diagnosis over a year ago, I wanted to find out EVERYTHING about Pontocerebellar Hypoplasia.  It wasn't a pretty picture and I remember crying every time I would look it up.  The reports that I read were very straight-forward.  Of course, there isn't a whole lot of information on PCH, but what I read would always state the following:  List of symptoms (too many to list here), treatments (a bucket-load of medication), and the prognosis.

The prognosis.

This got me EVERY.SINGLE.TIME. In fact, I remember Cody walking in on me crying many times as I read the prognosis over and over.  And guess what?  It was only one sentence long.

"Most children with Pontocerebellar Hypoplasia live only into infancy or childhood."

  How could the author of the reports just state this so simply and matter-of-factly? It was like a slap in the face every time I read it and I wanted more details.  How was it going to happen?  How do I know when his time is up?  Why? Why? Why?

So I stopped.

I stopped Googling.  I stopped researching medical records.  I had too many questions and not enough answers.  It was a relief to make this decision.  I felt that I had dug myself into a deep, dark hole and that each time I read a medical report, I would dig myself deeper.

I began to appreciate the here and now.  I began to look at Jett as an individual, not a "case" or a "patient".  I realized that even within the PCH realm, each child is different.  I also began to look up blogs that were informative, positive, and written by real human beings with real human hearts!  No offense, doctors.  

Anyway, one day in my searching, I came across this website called "This Little Miggy".  The author is a mother of two girls, one of which, was born with limb differences.  You can read all about her HERE.  What I really liked about her blog was that each week she highlights a child with special needs.  As I would read through each story, my love grew for these precious children.  Each of their circumstances is so different, yet I felt a connection to them and their parents.  

Last week, I had my chance to write about my sweet, little Jett man.  As I wrote about our situation, I became overwhelmed with gratitude for the precious spirit that I have in my home.  I need to fall back on this more often.  There are times where I get too caught up in the bad moments.  I get caught up with the medical side of things. I get frustrated and angry.  It's not fun for anyone involved.  My goal is to write out my thoughts more often. If I don't do this, I may end up making more crafts (refer to previous post)...and then become a hoarder...and then get kicked out of my house because of it. 

 Let's not go there.  I promise to write out my thoughts more.

If you are interested in reading the post about Jett, go HERE.

OH! I almost forgot, we have new family pictures.  Exciting, right?  Getting family pictures, in itself, is a whole other story that I will have to write about sometime soon.  For now, I'll show you the "ummmm...yeah, this picture turned okay I guess" picture.

Just Call Me Martha

Martha Stewart, that is.  Okay, don't...I'm actually not a huge fan of hers, but she is pretty crafty when she isn't committing felonies.

Lately, I have become quite the crafting diva according to my husband.  I used to loathe crafts.  I didn't understand why people wanted doilies hanging from their ceiling or wreaths made out of yarn.  Well, folks, times have changed.

Let's begin...

Here is what a typical day looks like in my household, except usually I'm not smiling like this.  Please notice the sweats (most likely stained with Jett's drool or stomach fluids), the energy drink in the background, pillows all over the floor, my crying child (obviously), and my messy hair.  Keep in mind that it is 9 p.m. and Jett is not in bed. In fact, he hadn't even had a bath yet and is buck naked underneath the blanket.  

At this point, making a wreath with yarn sounds GLORIOUS...

And so while Jett was doing this one afternoon....

                                               

I created this.  My first wreath EVER.

 And it doesn't stop there, folks.  Here we have a full-blown Valentine-making session going on (top picture) and a cute heart banner made out of burlap and felt. 

I know, I just keep surprising you, don't I?

To be perfectly honest, it's hard being a mom!  Being able to do little crafts during nap time has become therapeutic for me. I have found that it is so important to continue doing the things you love (or things you didn't know you loved) when faced with challenges.  Jett, is no doubt, the biggest challenge that I have ever taken on, but I am grateful for him!  He pushes me to my limits and makes me stronger, as a person, each and every day.

Here are a few more things that I have done this past month or two:

A Waffle Bar!  I had some friends over for brunch one morning. 

We stuffed ourselves silly and had some great conversation.

A Baby Shower!  I threw a "Sweets" themed baby shower for one of my friend's.  It was so fun coming up with different ideas for food and decorations.  Thank you Pinterest!

And finally....an Iron Chef Party!  Seriously, if you and your friends have not experienced an Iron Chef Party, you need to do so pronto.  My friend, Chelsea and I hosted the event and we went all out.  She is a food blogger and posted all about the party HERE

I am far too lazy to post all of the details, 
especially since she did such a good job describing it already.

However, I will say that the party was amazing and the food was divine.

It was such a fun date night with Cody, too, although he doesn't look too excited in the picture below.

Kissing Booth

I am one broke mama this Valentine's Day...

but those kisses are worth it!

XOXO

Hibernation

I have now been working on this post for about five weeks now...and finally getting around to actually publishing it.  You would think that with my title, "Hibernation", that I would have gotten around to publishing sooner!  

It is true, though.  Jett and I are hibernating until spring decides to roll around.

This winter has been nasty; and I'm not talking about the weather.

SICKNESS!

Frankly, we are sick of it, and I bet you would agree.  

EVERYONE has been hit this season including us.  

There is a more detailed account HERE about what Jett dealt with, but let's just say that we are glad that he stuck around.  It was incredibly scary there for a bit and we were worried that we might lose him.  We weren't quite ready for that to happen (we never will be) and he wasn't ready either.  He wanted to show us how strong he really is.  I would prefer to not have him be forced to prove that again.  It takes a toll on everyone.  

Get ready for major picture overload below.  

I did  A LOT of baking over the holidays and loved every minute of it.  I jammed out to the Christmas radio station and test-tasted all of my cookie dough...to make sure it was safe, of course.

 The day before we traveled back to Utah, we found out that my parents' dog, Buddy, passed away.  He was really sick with pneumonia and his kidneys were failing him.  I begged my parents to keep him alive (he had to be put down) for one more day so that I see him, but Buddy was too sick.  

He was such a great dog and companion for my dad.  I always looked forward to taking Buddy and Kusaba for walks together.  They would always try to bump each other off of the sidewalk as they walked.  Oh...and his breath.  He had the stinkiest doggie breath EVER.

I miss him, but he's happy and healthy now in heaven.

The first day back in Utah was a beautiful, sunny day.  Jett and I had some fun in the sun.  He loved feeling the warmth on his face and gave me some good smiles.  This was, of course, before the dreaded sicknesses hit.

Cody's dad, Jerald, turned the Big 6-0 while we were in Utah and we HAD to throw him a surprise party...only because he hates them so much.  A huge crowd showed up to celebrate.   We had fun dressing up in the "photo booth".

Jett was wiped out toward the end of the party and cuddled with his Aunt Tiffany (my sister).  She has the special touch.  Cody and I try to imitate how she tickles Jett's head, but can't do it quite like her.

Tiffany and I were able to spend some quality time together...pedicures, Cheesecake factory, and wearing mustaches as we drove around Salt Lake.  

We spent Christmas up in Logan with my side of the family.  Our Christmas Eve party was definitely something we'll remember...for both the good and the bad.  

The good:  Our White Elephant party.  Let's just say that Cody and I are the king and queen of white elephant gifts.  Is that something we should be proud of??

The bad: This was the night that we discovered that Jett was really sick with something...we just didn't quite know what yet.  Poor baby.

Our first trip to the ER...at Logan Regional Hospital.  Definitely not our favorite hospital, but when you're in a pinch (no pun intended), you go there.  This is where we found out Jett had C. Diff.

By the way, if you understood my pun above, props to you. Hee hee.

Even though Jett was terribly sick, we tried to still make the best of our trip.  As you can see, I let Cody play dentist on me, but I didn't get any happy gas.  Booooooo.

We also went out to eat a lot.  That's what you're supposed to do during the holidays, right?

Second trip to the ER with Jett for some IV fluids...this time at Primary Children's Hospital. 

Back home in Omaha, things took a turn for the worse.  I tried to keep Jett at home throughout his sickness since we have all of the required medical equipment.  However, his lungs began to worsen and I didn't want to chance anything.  Jett ended up at the Omaha Children's Hospital for five days.  It was a little stressful, to say the least, because during his stay, I came down with the flu bug.  I was DOWN and OUT.  The hospital nurses didn't want me there until I was feeling better.  That was somewhat difficult to be laying in bed at home while your baby is deathly ill in the hospital.  Not fun.

            

"I will conquer!!", says Jett.

Flash forward to today, we are on the mend! We are so ready for spring to be here.  Honestly, the winter hasn't been that bad, but I think we need some warmth and sunshine just because.  

 I am super hesitant about going out where there might be a lot of germs.

 I've turned into Mama Bear, so watch out.  

"Put that hand sanitizer on NOWWWWWW!" roars Mama Bear.

A Special Connection

Without going into much detail, there could have been MANY reasons for Cody and I to skip church today. Everything was going against us, it seemed, but we rushed to get there regardless.  We arrived just in time for the Christmas program to begin.  The choir began to sing and the spirit immediately filled the room.

Jett loves music.  At first, he was quite restless, but once the music began, he became still and content.  Cody draped Jett over his shoulder as we listened to the beautiful music and he drifted off into sleep.  As the choir began to sing, "Away In A Manger", I felt a tap on my shoulder.  I turned around to find an older woman standing there.  She was about 50 years old and had Down Syndrome. She was frail and you could tell that she was recovering from cancer treatment.  The woman quietly said, "Oh you have a special baby" as she touched Jett's little head with shaky hands.  "He's so special," she repeatedly said.  I put out Jett's hand for her to hold and she stood there through the entire song stroking his fingers.

Cody and I looked at each other in amazement and we couldn't help but smile.   Reason being...we have some good friends who, too, have a child with special needs.  About a year ago, they had this SAME exact experience at church.  What an honor to have seen that sweet exchange between two of Heavenly Father's choicest children.  I think they know a lot more than we do about how this world works; or, at least, how it should work.  If we only knew what they know, this world would be a different place.

Needless to say, I had to leave the meeting for a minute because I was so overwhelmed with emotion.  What a special gift we received today.  I am so grateful for that woman and for the unconditional love she displayed.

Our thoughts exactly

The past week I have ran in to 2 different blogs from special needs parents.  Its amazing to read them because, the thoughts and feelings that they described are completely in line with what we feel and think.  If our parents or close friends were to read these, they would think that we wrote them.  Thank you so much to the authors for putting your feelings to words, and expressing the things that we feel but cannot transfer to paper.

We're not special parents

What I would tell you

Thanks to those that pointed me to these blogs.

Jett is ONE!

We were so happy to have celebrated Jett's FIRST birthday with so many of our friends and family.  The birthday celebrations went perfectly and there were no big fires to put out (literally).

It truly has been a crazy year and we have ALL been through a roller coaster of emotions with this sweet, little boy.  It was so nice to CELEBRATE his birthday and remember all of the positive things that have happened this past year.

Cody and I had decided early in the year that we wanted his first birthday to be a huge deal.  We knew that we wanted to light off wishing lanterns, but didn't quite know how it was going to work out.  When we ended up ordering 300 lanterns, we knew we were in for a great party!  We sent 100 lanterns back to Utah to give to our family and friends so that they could celebrate with us from afar.  Here in Omaha, we delivered about 100 lanterns around our neighborhood and then kept 100 lanterns so that we could pass more out at the actual event.

Below is the invitation that was sent out, along with the poem that I wrote to give out with each lantern (printed on the picture collages).  

Over 100 people showed up to help us celebrate!!  Conditions were perfect...no wind and no fog, which we had been worried about earlier in the day.  We lit the lanterns off and they all floated East over the Missouri river.  It was such a magical moment.

Afterward, we all came back to the clubhouse and had all sorts of "In-flight snacks and beverages", which included hot chocolate, Capri Suns for the kids, donuts, airplane suckers, and little airplane treats made out of Tootsie Rolls and lifesavers.

In the clubhouse, I set up a display to celebrate Jett's Flight Plan, which has been taking place this past year.  I put up pictures of our friends, family, and complete strangers wearing the "Jett" shirt all over the world.  It was so neat to see all of the places Jett has traveled so far.

Thank you to those who have been a part of our lives this past year.  We truly are blessed to know you!

A big thank you to Jett's grandparents, as well, who all made the trip out here to celebrate with us.  We loved having you here and Jett LOVED cuddling with you.

To Jett,

 You are one amazing little boy.  I am humbled and grateful to be your mother.  You have taught me more things over this past year than I have learned my entire life.  You have taught me what it means to be strong and how to be patient.  You have taught me how to appreciate the little things in life and to celebrate the tiniest of accomplishments.  Your presence in our home brings us so much JOY.  Happy 1st Birthday!   

Love,

        Your mommy 

It Gets Better

This past week has been exceptionally tough on me for some reason.  I don't know if it's the changing seasons or if I'm just tired, but it was different. Taking care of Jett has gotten the best of me and really tested my strength and patience.  I find that when Jett is experiencing bouts of pain and distress, I have to disconnect myself from the situation.  My "nurse" instincts (who knew I had them?) have to take over. 

Is he breathing? Kind of...check.
Is he choking?  Not anymore after suctioning his throat and nose...check.
Is his feeding tube irritating his skin?  Yes it's red and inflamed.  Lidocaine applied...check.
Has he gotten his scheduled medications?  Yes, next one is in an hour...check.
What is his temperature?  100.4...hmmm, something is up.

I go through this check list OVER and OVER about ten times a day, if not more. 

IT. IS.EXHAUSTING.

I think the whole "disconnecting" thing is a defense mechanism of sorts for my emotional stability.  If I didn't do it, I would be crying all the time.  Crying out in anger and guilt that my sweet, little boy has to go through so much.  Sad over the fact that he can't enjoy a visit to the Children's Museum or a ride in his stroller.  I just don't get WHY he has to suffer through it all.  

With a special needs child, I have heard that the first year is the hardest.  Hard because you don't know quite what you're dealing with, at first, and hard because of the unpredictability of their day-to-day as well as their future altogether.

I decided to approach my PCH (Pontocerebellar Hypoplasia) Facebook group about this and ask the question, "So I need some honest answers here...what was your first year like with your PCH child?  Does it get better?  Furthermore, does the CHILD get easier to take care of or do you feel that YOU were able to deal with things better?"

Here were some of their responses:

1) "It was AWFUL. So bad I have blocked most of it from my memory. I couldn't drive anywhere. She cried ALL the time. She wasn't social. It sucked. She got much easier. She is happy all the time now. Only cries when she's sick. She smiles and laughs and had a personality. It will get better. Just hang in there."

 2) "Yes the first 2 years were tough, heck, they were horrible, he cried, all the time, no matter what we did...once we got things figured out, and got him on the right meds, it did get better...he wasn't as sick as much, probably we were able to deal with things a bit better as well. just recently things have gotten tough again.  He is a lot better now, he smiles and gabs our ear off. shows us when something is bothering him with facial expressions...THINGS WILL GET BETTER!!!!

 3) "The first year was unbearable! I think I said "I quit" every night. He would cry 24/7 & we had sooo many issues. The 2nd year has had challenging periods but is a bit better (or maybe we are just getting used to things). It wasn't until a few months ago that I actually felt comfortable to leave him with a sitter because I wasn't afraid he would scare them away!"

4) "It gets much better and much easier. i can hardly remember the 1st year i think. lack of sleep and anxiety/grief/anger. but we settled in with our son, changed our expectations, went to therapy (it really helps!), did some soul searching and realized that all the negative makes those small bits of positive SO WORTH IT. now we do things we never imagined we would do! hang in there!!!"

After reading these responses and many more, I breathed a HUGE sigh of relief.  THINGS WILL GET BETTER.  They just have to...that's all there is to it!