Baer: Rare Disease Day 2013

Today is Rare Disease Day and many of you know that my sweet Baer was diagnosed in January of 2010 with Autism and in the spring of 2010 with Pitt-Hopkins Syndrome.  Today I am honoring him and all of his PTHS friends and his classmates and friends who have been diagnosed with a rare disease by posting his picture on facebook and sharing this blog post.  There are only around 200 diagnosis of PTHS in the world.  If you would like to know more about Pitt-Hopkins Syndrome, go check out the new and improved website HERE.

A little about Baer: Baer was born in July of 2007 weighing in at 9 lbs 3.5 oz and 20.5 inches long with 4 nipples and 11 toes.  He had a full head of dark brown/black hair, red skin, and fuzz on his shoulders and arms.  Baer was an easy delivery and was a dream baby.  He was happy, smiley, and beautiful.  None of the names we came to the hospital with for ideas fit him and in a round about way, James (who was then a few weeks from turning 2 years old) named his brother.  When he said we should name him "Bear" Spencer and I agreed that no other name would fit.  We switched the vowels to make it seem like more of a name and gave him my grandfather's middle name.

It wasn't until he wasn't meeting his earlier milestones like sitting up, rolling over, etc that we felt there might be something unique about Baer.  We told his pediatrician about our concerns and she referred up to an early childhood intervention program and Baer started getting therapy a few times a week.  The first few years of Baer's life involved many trips to Children's Mercy Hospital in Kansas City, where we lived at the time, for appointment after appointment to try and figure out what made Baer so unique.  In the meantime, Baer was still a smiley and happy boy and brightened the lives of anyone that took the time to be around him.  Waiting list after waiting list, blood draws, CT scan, eye appointments bi-montly, therapy, GI doctors, foot specialists, and genetics appointments went by and we didn't have a diagnosis.

Many people would ask me why I was so concerned with finding a diagnosis and telling me that it isn't good to put a label on children.  I would reply to them that in my ignorance of Baer's diagnosis, I don't know the best ways to help him achieve his highest degree of growth and happiness in life.  I wanted to know his diagnosis so that I could know the best ways to help him learn and grow.  Those feelings still sit in my heart as I have friends whose children are still undiagnosed and I feel for them

About a month after the boys and I moved back home to Montana to find a house, I got a call from his geneticist who had been continuing testing in Kansas City telling us that they had found an abnormality in the TCF4 gene of Baer's 18th Chromosome.  Baer's TCF4 gene mutated sometime in his development (either the egg or sperm he developed from).  Yes, you heard right....Baer is a mutant!! :)  This syndrome was very new to his geneticist and he asked if Spencer and I could come in for testing.  He wanted to know more about where this mutation came from.  Spencer was graduating in a couple of weeks from Cleveland Chiropractic College in Kansas City so it was going to be perfect timing because I would already be there for his graduation and to move the rest of our belongings home.  The geneticist found nothing in our genetics to connect PTHS to us and he told us that the likelihood of Spencer and I having another child with this same mutation would be extremely low.

Baer started walking at 3 years old...only a couple months after his diagnosis.  Baer is now 5 years old and continues to receive therapy at Pediatric Therapy Clinic and through school.  He LOVES to be tickled and played with, big dogs, WATER, just about any food, nature, sucking on rocks, and music.  He is a blessing we didn't expect in life but I can tell you that I wouldn't wish him to be any other way.  He is loved by every member of our family with a love that you couldn't begin to imagine.

Thank you for taking the time to learn a little more about Baer.  Also, I wish my husband another wonderful journey around the sun as today is the day of his birth.  He is our rock.

Namaste

My Valentine Boys

Valentine's Day came FAST and I realized the day prior to my kids' class parties that we didn't have valentines to give out.  A photographer's solution?  Quick, lets run to the studio!  James wanted to do a valentine where he held his hand out in the picture, punched holes above and below his hand, and stuck an organic lollipop in there.  Admittedly, I would have liked to have taken that shot with a higher f-stop so that his hand was more in focus.  We had to hurry with the shoot because one of the last times Baer was in the studio he managed to make quite the mess so I now limit his studio access time.

Sure enough, Baer was busy as always and I had to bribe him with some Annie's Bunny Crackers to stay on the chair for a few pictures (which is what we stapled to the back of his valentines for his classmates).  I was surprised at how many cute ones we had in the time we took.  The afternoon light was starting to seep in through the window a littler more harshly than I wanted near the end and we called it quits.  Anyway, I may be partial...but aren't they absolutely handsome? 

Below are some more of my favorites.  James had worn a baggy t-shirt to school that day and if you look, you'll notice that both Baer and James are wearing the same shirt for the photos.  James is still bigger than Baer but they are close enough in size they can share shirts sometimes.

Mommy Brag moment: Guess who took the photos of Baer and I together?!?  Yes!  James!!  James loves to take pictures and asked if he could take some of Baer and I.  I slightly reluctantly said yes even though I hadn't showered in a couple days or applied makeup (I may have been wearing mascara but that's all).  I figured he could take a few and the world didn't have to see them.  So take a look because they are really real: my Momma Bear side (minus a photoshopped zit).

I set a large pillow on the (concrete) floor just in case...you know...anything!  He ended up laying on it mostly and shooting up at us which was a neat perspective except for a few I didn't include because my chin looked like there were a few of them!  I briefly reminded him how to use the focus points and to focus on our eyes prior to snapping the shot.  He dreams of becoming a cowboy and owning a ranch, but he'd make a talented photographer too, don't you think?

Namaste

Precious Newborn

It isn't very often I take the opportunity to photograph a newborn baby but I couldn't resist when my husband's CA (chiropractic assistant) contacted me about doing newborn pictures.  I have photographed the mother before and I knew how photogenic she was.  It was a no-brainer that her sweet daughter turned out to be just as beautiful.

I started out in the early afternoon taking some photos in their home, focusing in the nursery area: in the crib, on the changing table, on the rug, etc, etc, etc, and too many to share!  Little baby "H" was so sweet and was such a good sport.  After Dad got home from work, we met at the studio where we took some family pictures and some with Daddy's tattoos.  Here are a few of my favorites, there were lots of them and hard to narrow down.  Enjoy!

Thanks for peeking,

Namaste

Big Sky Photo Summit 2013

Sunday I carpooled with a couple friends up to Big Sky, Montana Ski Resort for a photographer's workshop.  I laughed, I cried, I made new friends, got motivated, and learned MUCH.

Mike Colon, destination wedding photographer, spoke the first two days.  I have heard Mike speak a couple of times and he is always motivating and brilliant.  I liked that Mike made the other attendees and myself comfortable so that we could ask questions without feeling like we were being judged.  After lunch on the first day we all went out to photograph a gorgeous model, Kaylee Bradford.

The 15?....maybe 17? of us followed Kaylee around with all our cameras: watching Mike, shooting, and taking turns individually with the model.  The top two images are images I shot while watching Mike and lucked out getting Kaylee to look at me for a couple shots.  We shot in a few locations at the ski resort and got a ton of questioning looks.  We looked like paparazzi, haha!  It was really fun and such a beautiful day.  It was pretty warm but I am still amazed at Kaylee's endurance in the cold without a coat.

The black and white image is a shot from my individual time with her.  I had an idea of blowing out the sky (making it white instead of blue) and capturing a soft black and white close-up...just something different.

The rest of the workshop was just as great and more.  I think my favorite part was listening to Jeff Jochum who is a business coach for photographers.  I cried, I laughed, I stayed up until 5am only to get up in an hour, and learned about a small portion of all the many ways I am making my business harder for myself.  Jeff inspired me and motivated me to make some changes in my business so that I can "Work. Happily. Ever-After" as Jeff says.

I'm excited to see where these changes will take me!  I'm ready to get started.

Here are a couple behind the scene photos: I thought I 'd share as well.  Enjoy!!

I know I have said it probably 15 times by now, but Thanks Tracy Moore for organizing this workshop!

Namaste

Pay It Forward: Marc & Lisa's Wedding

It's a new year with new goals and a fresh start!  As I was thinking about the list of things I would like to improve on over this next year, blogging was near the top of the list.  I was thinking of ways to try and excite myself into blogging and I came up with what I think is a great idea.  I was facebooking away the other day and came across a friend's status that read:

 "Creative Pay-It-Forward: The first five people to comment on this status will receive from me, sometime in the next calendar year, a gift - perhaps a book, baked goods, a candle or music... a surprise! There will likely be no warning and it will happen when the mood strikes me. The catch? You five people must make the same offer in your Facebook status. Happy 2013!!"

Those who know me know of my love for creating!  I thought it sounded like something that was totally up my alley, so I hopped on the "Creative Pay-It-Forward" Bandwagon.  I switched up the wordage a bit and quickly reposted.

One might wonder what in the world this has to do with blogging so I shall explain.  Shortly after re-posting the status, I began thinking of all the things I could do for my friends who decided to participate.  I thought of my silk-screening talent, knitting, baking, book-making, and so many things I used to LOVE to do but haven't had time.  A light bulb turned on, the rusty wheels in my head began to spin, and I exclaimed  "By George, I've got it!!"  I will be incorporating my Creative Pay-It-Forward into my blog and sharing my creations here.  I haven't decided if it will be a weekly or bi-weekly ordeal, but it is in the works.  I have even decided to "Pay-It-Forward" to more than those 5 friends who signed up.  I'm excited to get started!!

For the first "Pay-It-Forward" Blog Entry, I am sharing a few of my favorites from an emotional wedding renewal I had the opportunity to photograph recently.  Marc has recently been told by his doctor that he doesn't have much time left on this earth with his love, Lisa.  His wish before passing on was to give her the wedding they never had.  Friends, loved ones, and gracious strangers all pitched in and created a wedding in 5 days!!  Like I said, it was an emotional day and I'm so glad I was able to be a part of such a wonderful gift.  

Congratulations, Marc & Lisa!

Thanks for peeking!

Arizona Heather

I was excited when I heard Heather was coming to Billings and I got the chance to photograph her.  Right after I took her photos is when we were going through a lot of rough stuff with Baer vomiting so much so I failed to post these (as well as some other sessions I will try and get caught up on).  Heather is a freshman teacher in Arizona, likes to knit (like me!!), likes Avatar: The Last Airbender (James and I love Avatar), she also likes reading, sci-fi, movies, and music.  Girl after my own heart, I tell ya.  Anyway...check out some of my favorites from her session.

This one below is with one of her good girlfriend's daughters.  They are obviously super tight.  She was a cutie and I couldn't resist snapping this sweet moment.

Doesn't she have a great smile?

This one is for fun.  When I uploaded this one I thought Heather looked so high society and thought it would look good with a little faux film grain.  Doesn't she look like a movie star from back in the day??  The sun flare on her ear almost looks like a flower. :)

Anyway, thanks for peeking!

Meet Doug

Meet Doug

Doug is a handsome (see for yourself), charming man with a love for adventure and outdoors.

He's dependable, distinguished (see grey hair for proof), fit, usually on time (if not early), has a fair fashion sense but not over the top, and is generally pretty clean!  He likes camping, fishing, white water rafting, rattlesnake hunting with his son, sapphire mining, and I hear he really likes to go skinny dipping.  He's a nice guy with a bit of a wild side.  Oh, and yes ladies...he's single :)

Thanks for peeking!

All images are copyright Jacque Jones Photography.  Please do not copy, print or save.

-Jacque Jones, photographer

Billings, Montana and surrounding areas