This year I decided that I wasn’t going to try to have this picture perfect Christmas card in front of the fireplace pretending to be a lovely pristine family.  So when we took our family pictures a couple of weeks ago, I decided to match the life of dysfunction with historical neglect, decay and a chain link fence – a much better fit.  

I send out about 200 Christmas cards with a Christmas newsletter every year.  I don’t know why, I guess I do it to stay connected to all the people around the nation that we have crossed paths with along life’s journey.  Maybe I send out so many so I just don’t feel alone. This year my step-daughter, Natalie offered to help me write the newsletter so I don’t just say the same thing about each kid year after year.  I so appreciate her contribution and recognition of repetition.  I so appreciate these kids doing yearly family photos for me.  I don’t know why family pictures are so important… maybe it is a way to look back and reminisce that things aren’t all so bad. 

Its laughable trying to raise three boys, three step-daughters, be a wife, have a special needs package and keep trudging along.  Well the photo shoot was ill-conceived!  We took 378 photos and don’t have a decent family photo!  I finally settled on one but we had to “Photoshop” two heads in!  Now I am not criticizing the photographer, bless his soul.  He didn’t walk out on us; it just is the nature of our family. 

The photos were shot in front of the historical decayed Old Mill, here in Cottonwood Heights, Utah very close to our home.  I tried so hard to prepare so it would be the least difficult experience.  I put together bins of extra clothes so no one would be cold.  In the morning, I loaded the car with props and things to sit down on.  I got everyone’s clothes all pressed and laid out so when they got home from school all they had to do was get dressed and go to Old Mill.  I got myself ready EARLY in the morning trying on outfit after outfit trying to analyze what made me look the thinnest.  I then beautified myself and hot rolled my hair once again before the kids got home from school.  I also packed my makeup.   I had so much confidence in my preparation that I stepped into this activity with such high hopes of it not being too frustrating for everyone.  That was my secret unspoken goal… that it would be fun for all.  Little did I know when we left for the location, I left the long jacket I had selected to hide my body at the house. 

Of course, Luke didn’t want to put on jeans.  He refused to acknowledge the nice little pile of pressed clothing I had prepared earlier.  He has a hard time transitioning from shorts to jeans every single winter.  Any change just throws him for a loop.  (Even today it snowed but he woke up and put on shorts…., it doesn’t matter for now, I will wait to give him the bad news that he needs to put on jeans today for later.) 

The day of the photo shoot, I told him what we were doing hours before but it didn’t matter.  He didn’t change his clothes until we were on our way to the location.  He came out to the car carrying those nasty, dirty, stinky, over worn old white tennis shoes.  I would buy him new shoes but let me tell you that is a blog all by itself.  Transitioning to a new pair of shoes for him is like a woman in childbearing. 

After he got his seat belt on, I snuck the dirty white tennis shoes out of the car.  I then slipped his church shoes on the floor of the car. It took him forever to get those jeans on but when he discovered that he only had church shoes to wear that REALLY upset his “mojo”. He was so disturbed by that!  He yells, “Church shoes are ONLY for church”.  Luke also only wears what he calls “bumpy” shirts.  They are polo short sleeved shirts that have bumpy fabric.  I decided this year to not introduce a new shirt right before the photos… (That DIDN’T go well last year and we even had a respite care worker helping with Luke), but of course the white “bumpy” shirt is spurned because the color “white” is only for church. 

 Well we got to the location.  Luke still wouldn’t accept the black church shoes so he tried to walk around in the “decay” with socks…. but finally after a half an hour put on those shoes. 

I was proud of myself that I took a chess set and soccer ball to distract the boys.  I thought if they had something to do during the boring parts that we would have a better result and help me with my unspoken goal.  They actually played chess and we got some great photos of them playing together waiting for the family photo shoot.  Jenny, my 21 year old step-daughter, showed up a half an hour late.  That didn’t work well, but oh well we did finally have everyone in one place at one time even though it took four different vehicles to get us all there. 

The thing that stunned me the most though was when my sweet adoring husband showed up with all three labs in the suburban.  My eyebrows contorted with astonishment as he got out of the car and let the dogs loose; I thought, “What is he smoking if he thinks we are going to try to throw the dogs into the mix?”  He must have had a lapse in judgment and mused for a moment that we are a normal family… that is just so sweet. 

Well I took individual photos of the kids and just kept snapping away.  Next year we need to video tape the entire process; it is really quite an amusing experience when removed from the situation.  When we finally got everyone there and had the dogs caught and back in two of the SUVs, we started the family photos. 

Picture after picture and pose after pose, the process began.  I kept explaining to the photographer that he needed to place me behind the kids so I had the illusion of being thin – even though I had those spanks on.  Luke was not interested in posing, he just wanted to manically laugh and laugh.  Of course it frustrates everyone else.  The photographer kept putting Luke and Natalie next to each other and Natalie can hardly handle being next to Luke in a normal setting let alone family pictures.  I can almost see her fingernails curling back.  We captured a photo of Natalie flipping off Luke.  Of course Luke didn’t notice but perhaps it made her feel better.  We didn’t even know that Natalie flipped people off. 

When we are in the middle of the photo shoot, a bunch of construction guys show up annoyed that we were where we were and that they needed to pave an asphalt sidewalk across the road.  What construction team starts work at 6:00 pm to pave a sidewalk?  And why are they concerned that we are across the road?  It was the strangest thing!  They made us move ALL our vehicles… that was quite the interruption and now we had a construction crew as an audience to the dysfunction. 

We moved our vehicles and went back to shooting photos.  The family is getting more and more exhausted and restless; I can’t believe the photographer can still be pleasant and hasn’t walked away from it all.  He is actually still putting us into more poses and positions and trying to get us to smile.  My husband, Cory, jokingly comments that getting of photograph of Luke smiling is like getting a photograph of Sasquatch.   He is right; Luke rarely likes his photograph being taken now.  You have to photograph him when he doesn’t know you are holding a camera to get the “happy shot.”  We just simply have to capitalize on the spontaneous silly moments…

What killed me was that the construction guys were starting to get frustrated with Luke not perfectly posing and were yelling things from across the road at us and saying, “Just smile, Dam It!”  I couldn’t believe it…..  They don’t live with him and they have the audacity to get frustrated with the process.  They have NO idea what it is like.  Did they think they were going to make a difference in his life by yelling at him?  Did they think that by yelling at him all of his tumors were going to disappear from his body and brain and he’d sit nicely?  If only things worked that way… if only then all my prayers would be answered so easily and I would not have to see my son suffer and I could be a normal mother.  How dare they complain when they only have to tolerate him for possibly one moment in time and then they go on their normal paths probably to their normal families. 

Whatever…. I actually find their attempt amusing.  What am I going to do – fight with the construction crew in the middle of all this?  Now that would really mess up my secret wish.  We try to just ignore them and focus on getting that dreamy idealic shot.  Hhmmmm the dreamy idealic shot never did materialize.  I don’t have high expectations either.  But of course we don’t know that yet.  As we are packing up all of the vehicles and the teenagers go in their different vehicles, I think everyone is relieved to be going in separate directions.  As I retrieve the last objects lying around, I feel just slightly sad that such a normal process is just so pathetically difficult.   I saw the construction worker backing up in his vehicle where we were taking our family shot and he was within talking distance, I say in a friendly way, “Well you guys are probably relieved that we are done.”  He says to me, “That one dam child just wouldn’t cooperate and smile.”  I sweetly say, “He has special needs and has tumors throughout his body it affects his behavior.” 

I walk away knowing that no one really understands what Luke’s life is like and what our life is like.  It is such a lonely road having a child with invisible chronic special needs.  Our challenges are not obvious and instead of people coming around to help, they just all quietly disappear and pretend that nothing is wrong but really they want nothing to do with the odd behavior.   It isn’t like breast cancer where everyone comes with meals and help….  this lasts a lifetime and no one wants anything to do with it. 

Well thank goodness for Photoshop and kids that are so sweet and kind enough to humor me to do this.  As I look at the Photoshopped family photograph, it gives me tremendous satisfaction.  I love these kids!  I love my husband!  I love the sweet lab dogs locked in the SUV’s!  I love the photographer that is willing to do this adventure with us every year! I love where we live and the beauty that surrounds us!  I am grateful that I have so many people to love and a collection of photos of us that reflect our personalities and makeup.  I am grateful and joyful to have this family and be able to capture the memories of this lifetime to share with those we love.  Thank you God for all that I have and who I am yet to be. 

Joyful and Juggling,

Deanna