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santa’s little hackers…

Santa’s Little Hackers {http://www.santaslittlehackers.com/} is a seasonal toy drive to adapt toys. They make simple modifications to the electronics of toys and give them away.

These adaptations make the toys accessible to individuals with disabilities so they can play independently.

Santa’s Little Hackers is an annual event put on by MaxMods. MaxMods is a 501(c)3 not for profit corporation chartered to ‘make the world accessible for all’ by identifying adaptations and modifications to make the world work for individuals living with disabilities.

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This is US… (a blog post in a mom’s own words)…{littleton family photography}

This is a very special blog post.  WELL worth your time to read.  This is a story of survival.  And love.  And bravery.   A REALLY beautiful story.  About a LOVELY  Colorado family and the light that surrounds them.

 

The past 20 months have gone by quickly. We thought we would be in a different place with our life, with our family of four. Today we have a five year old girl named Lily and a 20 month old son named Everett. The name Everett means hardy and brave. That he is. Everett joined our family through a complicated course of events that could have ended in a few different ways. He is here with us today because of medical intervention. He is here because I trusted my gut and listened to that little voice. He is here today because he fought to survive. He is a fighter. He is a warrior. He has had so many pokes and scars remain on his hands, feet and legs. Everett’s birth was a medical decision to save my life and his. His entry into life was not how we planned.  He was born at 27 week gestation (a normal pregnancy, of course is 40). He had a placenta and cord complication that caused severe growth restriction for him. I had multiple complications that could lead to stroke and death. We weren’t ready for him. We mourned it all and I still do from time to time, it’s getting better with time. I can enter that place at any moment on rough days. I feel sad I didn’t feel him grow in my belly. I barely looked pregnant. I lay in a hospital bed with women giving birth next to me to full term healthy babies while I spent weeks in the hospital. I could hear them. I ached.  My body could not maintain this pregnancy. The decision to end it was calculated, essentially a risk ratio.

We survived and here is a bit about our journey.

Everett was born in March 2015 and weighed 1 lb and 8 oz. He was 11 inches long and the size of a 24 weeker. He was beyond fragile. Tim, my always optimistic husband cut the umbilical cord with scissors that were bigger than Everett. The operating room had at least 20 people there. I was happy. I had a new baby. I was terrified. I had a 27 week old baby would was intubated and placed on a vent immediately. He was given drugs to help his lungs. I had more complications from the birth afterwards and eventually I went home, but both he and I were sick.  Everett called the NICU home for 140 days. One hundred and forty days. That’s a long time. It SUCH a long time in a baby’s life. Our life stopped and we were in survival mode. Everett was 6 weeks post my due date when he came home. He came home on oxygen with a monitor and could literally go two minutes without oxygen before he was saturating in the 60’s. He would be blue. The monitor and oxygen gave him life. He was not easily portable, but he was home. He was home with our family and he was alive. We lived the next 11 months with full time oxygen. Day and night. Night and day. A baby attached to a cord, the cord that kept him alive. It seems simple and in all reality compared to other things, it is. It is simple to maintain. It is however, very restricting. We kept him home except for doctor appointments for months. He was at an incredibly high risk for lung complications and we didn’t want another hospital stay. We were isolated. I returned to work after having him at home for only 6 weeks. I felt robbed of that time to enjoy my baby. Those 6 weeks were filled with specialist’s appointments. I felt like I barely knew how to do it all even though I did it every day in the NICU. I had amazing teachers of nurses and doctors, people whogot me through the darkest moments in my life. We had a new normal now. Our normal has peacefully settled in with us. We eliminated oxygen needs in June 2016 while he was awake andnight time dependency in November 2016. They have left all the equipment for illness, should that occur. It’s a shadow in our home. It haunts us a little in the corner of the room. We still check him religiously with the pulse oximeter.

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a golden morning…{littleton family photography}

this family has trusted me to capture their family connection quite a few times. and each time i am with them i feel so comfortable –like part of the family. their smiles and laughter are so genuine and raw and no posing was required. we enjoyed a lovely morning together while the leaves were proudly displaying their glittery golden hue.  my favorite time of the day and the year.  and other than a hot cup of coffee, photography is my favorite way to start the day.

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wide open spaces…{littleton family photography}

i really love working with this family. it’s been an honor to be their official family photographer over the years (i think we started working together in 2008) and i’ve watched the kids grow and change so much.

being the artist behind the camera is not a silent role. i get to capture the simple and sweet moments of love and connection that will be cherished for generations. i applaud you guys in many ways–you value professional photography year after year and hang large pieces of art all over your lovely home: canvases, metal prints, standouts. your home is filled with moment of togetherness forever preserved. and it’s very humbling that year after year you choose me to be your photographer. a walk in your home to see all of the work we’ve created over the years is so humbling and lovely.

this year’s session was a fun and different location and i just love the look we achieved: natural and open while celebrating the lovely view of the front range all within your neighborhood. perfection.

thanks for allowing me into your lives. it’s never work for me to be around all of you. you’ve given me and my cameras a true voice over the years. and i thank you for that.

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dear hallie jane…

i need to write this now while the emotions are bubbling inside of me.

hallie–
you fought ovarian cancer with grace and class. so many of us never really knew how much you were struggling because you always rose way above it. you always concentrated on the gifts of right now rather than the struggles happening concurrently. i always admired you for that and for so many other things. you were a beauty inside and out and loved by so so many.

we met at a colorado ovarian cancer alliance event, a movie premier of the band of gynecological oncologists called NED (no evidence of disease). you looked so fancy with your teal accessories, your stylish short signature blonde locks and your dashing husband (also clad in teal) on your arm. i was photographing the event and i knew we needed to meet. and i remember our first hug (caught on camera by my friend and fellow photographer molly.) it felt so good to meet someone my age and in the same place in life. what a comfort that day was. our get togethers over the years were short but powerful. how intense it was to have someone who truly experienced the same things as i had, who understood exactly my fears and tremendous anxieties about the disease we shared, our kids and our lives with the word ‘cancer’ in it. when we met we absolutely were on the same page. we talked about our kids and the fear in their eyes, our spouses and families and their tremendous role in our lives. we drank: prosecco, wine, margs. we walked and we talked around clear creek in golden, sipping coffee and letting the cold air blow through our hair-{we even got our cartilidge double pierced that chilly day in january together in a design you picked that will forever remind me of you and your unbelievable fashion sense}. i always sat in admiration of your focus and your determination to push all of the messy ovarian cancer drama out of your way so that you could live your life. you never let it define you or even label you. never.

i am so glad i did a mini photo shoot after our lunch in denver after we met. love these images…

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and even though you fussed about getting behind the camera during the photoshoot we did for mountain moon..i’m so glad you did. so we could capture your immense love for emily and your sister katy.

hallie jane--the beautiful warrior in teal.

hallie jane–the beautiful warrior in teal.

you were always there at Jodi’s race in City Park…with your amazingly supportive family (and even your wiener dogs) sporting teal and your million dollar smile.

jodi


jodi’s race in 2014 as we proudly sported our hair growth.

and even a teal wig…


this quote will make me forever think of you!
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and this amazing caption to a photo you posted on instagram exemplifies your way with words and your attitude on life with cancer–so spot on.

this is the text from one of hallie


click here forA BLOG Hallie wrote for my web site,

you will ALWAYS inspire me in this journey my friend. always.

your love for jeff and your children always inspired me as well.

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i’m very grateful for my time with you and all of the lessons you’ve taught me. until we meet again sweet hallie jane.

NAMASTE

Hillary Shemin - October 6, 2016 - 4:38 pm

MB…I’m at a loss for words. She was beautiful…YOU are beautiful. Live your life as you know she would want you to do. Hugs to you my dear friend.

Shelley - October 6, 2016 - 5:49 pm

Very poignant.