Monday, October 17, 2016

Our Latest Adventures

I'd love to say we've been insanely busy and that's why I haven't blogged in forever, but that would be a lie.  I finished school mid-July.  Michael worked all summer long with no time off.  Mila's been happy and healthy.  When Mila is happy and thriving the furthest thing from my mind is this blog.  However, I should share and celebrate even during the euphoric seasons in our lives.  I got distracted with life.  It happens.

Y'all, the beauty of Colorado is insane.  Everywhere you turn, the views are incredible.  The picture above is basically in our backyard.  Do yourself a favor and visit this place.  You won't regret it.

One of our adventures was a late summer trip to Washington to visit my family.  It was relaxing and enjoyable.  We hiked, celebrated my brother's birthday, visited Seattle, ate tons of food, watched cousins play, and shared lots of stories and love.  I didn't take too many pictures.  Lets be honest...when you're so focused on snapping pics, you miss out on all the small moments.

Shortly after Washington, we ventured to Crested Butte, here in Colorado.  As Mila gets older, I convince myself that she will do fine on overnight trips.  Despite the 1,473 things I have to pack for her, no matter what-she'll sleep and eat the same way she does at home.  No matter where we go or the nice amenities we have access to, girlfriend prefers to be at her happy place.  Her happy place is our home, with her toys, laying around when she feels like it, free reign of snacks, and her dark, cold, noise fanned bedroom.  We try to recreate as much of her "normal" as we can, but traveling with any kid can be tough.  She typically is a great traveler, but after a few days the change in environment becomes obvious.  Her eating and sleeping becomes grim, she doesn't want to walk much, and she becomes a mute.  Even for a non-verbal kid, a complete mute is a big change.  We stayed in a cottage called the "love shack."  A tiny gingerbread-type house with everything we needed-including its yard sitting adjacent to the yummiest coffee shop.  Michael has learned when I travel, I need easy access to good food and coffee.  As long as he has wi-fi, we're golden.  All the restaurants and coffee shops were locally produced- which meant you wouldn't get these goodies anywhere else in CO. We hiked, biked, and took a few scenic drives. Crested Butte became my new favorite mountain town!

We decided to take family pictures this year.  We hadn't take any professional pics since Mila turned a year old.  It was definitely time and these were extra special for many reasons.  The most important being Mila is walking on her own!  I wasn't sure how she would do since we would be walking off trail to capture moments, but she did so good. Her first solo pic was sweeter than I could've imagined.  I'll treasure these pictures forever!

Sunday, October 16, 2016

Mila James Turns Four

Four super fast, wild, crazy, unpredictable, adventurous, and joyous years.  Mila is 43 inches tall and 43 pounds.  Definitely our gentle giant.  The past several months have been filled with lots of walking, exploring, and maturing.

She finished her first year of preschool strong!  I got to review her IEP (individualized education plan) with her teacher and therapists at the end of the year.  Although Mila is still functioning below her age, she has made some incredible improvements.  She's accessing her environment independently and socializing with others in class.  She will stay in small groups and initiate play with her teacher.  She stays actively engaged during story time and will dance and move during music time (big surprise).  She will participate in non-prefered play for short periods of time, but wants to immediately follow with preferred activities such as rolling a musical ball.  She started to show interest in holding a paint brush and crayons-actually making appropriate marks on her paper.  She makes smooth transitions between centers in the classroom, leaving the room with the teacher to walk the halls, and washing her hands after diaper changing. She requires hand over hand with certain activities such as cleaning up after centers, snack, and washing hands after diaper changes.  She will walk for several minutes around the school on her own! She still requires assistance when climbing stairs and refuses to go down them.  She is beginning to navigate all areas of the playground.  Mila will be noticeably hesitant if she is uncomfortable in any situation.  She will sit and wait for assistance when she feels unstable on certain surfaces.  The sweetest ending to her school year was receiving a laminated book of Mila's memorable moments. Mila has made great strides within the last six months.

Sunday, January 3, 2016

A First That Most Certainly Won't Be a Last

As a parent of a child with special needs, I have accepted that our lives are constructed differently from most.  At three and a half years old, Mila still requires full care.  I dress, feed, and bathe her.  She still requires a lot of supervision with walking.  She has not figured out how to safely navigate stairs or changes in outside terrain.  She doesn't remember to always put her hands down to brace her falls.  She isn't potty trained.  She's nonverbal but makes lots of sounds.  She bops her head and flaps her arms excessively when she is happy.  I don't mention these things repeatedly for anyone to get out their violin and play any sad songs.  Most of you already know these things.  I mention these things again because her assistive care and quirky behaviors create a lot of attention when we are out in the community.  

I have dealt with other moms attempting to be friendly, but as soon as they open their mouth, everything goes south.  They could very well have good intentions, but their lack of experience with "differences," leaves an awkward presence.  I have learned to simply avoid those situations.  It makes it easier for everyone.  I have also learned that in the midst of stares, I simply don't make eye contact with anyone who's eyes are burning holes in my side.  Again, it makes it easier for everyone.  If I don't acknowledge stares, I don't get defensive and react negatively.  

Living 1800 miles away from family and friends, we do not have any childcare for date nights, errands, etc.  We take Mila everywhere we go.  That's how it's been since she was born.  Would we enjoy some date nights? Sure.  However, I'm that mom who enjoys taking Mila with me wherever I go.  I like going out as a family to run errands or have dinner at our favorite spots.  

Friday was no exception for us.  As a family, we went downtown and had dinner.  Mila had already eaten so I brought along her Kindle and turned on Finding Nemo.  Any of you that know us, know that Finding Nemo is Mila's most favorite thing in her entire little world!  It makes her smile, squeal and laugh.  This time was no different.  She would squeal and laugh about every 10-15 minutes.  I ssh'd her a few times, but she doesn't even know what "ssh" or "be quiet" means.  As usual, the people sitting to the left of me had been staring at us since we sat down.  Granted, their booth faced us, so they didn't have multiple viewing options,  However, they had a conscious choice not to stare.  I am always on guard for these things, but Michael has no clue this ever happens. An example of how different mom and dad's are :).

About 30 minutes into our restaurant time, I noticed a woman standing at the back of our booth.  For a second, I couldn't figure out why she was standing there.  Our booth was right in front of the kitchen, so there was only employee traffic in that area.  Then, I realized she kept turning around making faces.  Raising her drawn eye brows, twisting her mouth in weird directions, pointing her head motions towards Mila at the same time.  I quickly realized this lady was trying really hard to get my attention.  When her face games stopped, she turned her back to us but remained at our booth.  After ignoring stares beside us, I was not willing to ignore this woman's actions.  I stood up and tapped her on the shoulder.  Me: "I notice that you keep making faces at my family, is there something you would like to say?" Crazy lady: As she's swirling her finger in the air, pointing down at Mila, "Yes, she is too loud.  She needs to be quiet.  She's disturbing the entire restaurant."  Me: "She's not disturbing anyone.  Why don't you go back to your seat and mind your own business."  Crazy lady couldn't even respond, before the "staring lady" to the left of me started yelling.  "She is too loud.  She's been loud all night.  She's disturbing us.  What the heck is she even doing here?"  Me: "Excuse me?" as I'm standing up out of my booth, at the edge of her table..."She has every right to be here as much as anyone else."  I wanted to slam my fists on her table, clear the dishes out of the way, and smash her face in.  I was beyond furious.  The manager came and stood in front of me and kindly asked me to please have a seat.  

As I sat down and glued my back to the booth as hard as I could, I looked over at Michael.  His face was sad and his eyes were glassy.  I forced a gentle smile, "it's going to be ok."  I was saying it was going to be ok because I needed to hear those very words myself.  It didn't feel ok.  I was so angry. I was insulted.  I was hurt.  I was sick to my stomach.  Mila was still in her world of Nemo joy, oblivious to what just took place.  The waitress quickly arrived at our table, "are you ok."  Me: "No I'm not.  Please clear our table and bring our check."  I had barely eaten half of my meal before this happened.

"Staring lady" and her husband had finished their meal before her outburst.  They had paid and had leftovers bagged on the table.  I guess she borrowed her husband's balls for a few minutes and felt brave enough to say something.  I was literally in shock.  

There was a man playing the piano and singing the entire time.  There was so much background noise.  I couldn't imagine Mila's squeals disturbing anyone.  In all of our restaurant ventures, I have never had one complaint about Mila.  She wasn't crying and screaming.  She wasn't running around.  She was sitting in the booth, watching a movie, and laughing from sheer JOY.  I couldn't believe I had been verbally attacked by two old bats who were complaining about my child being HAPPY!  

The Manager came to our table and was overly apologetic.  He didn't even understand what happened.  As I'm explaining Mila, when I shouldn't have to say anything at all, tears are rolling down my face.  "She's developmentally delayed.  She's nonverbal.  She squeals when she's happy because that's how she expresses herself." Ugh!  I was so mad at myself as I'm saying every word.  I was mad at myself for not having a more clever rebuttal to those pretentious, asshole women.   I will never reprimand Mila for being happy, nor apologize for her joy.  

A free meal, desserts to-go, and all the apologies from staff didn't alleviate the hurt I felt.  I silently cried the whole way home.  I just wanted to hold Mila.  I wanted to feel her joy.  I wanted to be reminded of how perfect she is.  I felt like those ladies were trying to rip away everything I value as being Mila's mom.  I'm definitely wounded from their ignorance and hostility, but they didn't break me.

In was recently encouraged to have compassion for the most despicable people.  See them for who they have the potential to be.  How does one do that?  How do you have compassion towards ignorance?  It would be easy to seclude ourselves from the outside world, but I refuse to do that.  It will happen again and I have to be better prepared.  I have to react differently.  I haven't quite figured it out yet, but my wheels are turning.  I am so grateful for Mila and what she teaches me everyday. I'm grateful we live in every moment and celebrate the smallest successes. I'm grateful for every time I'm within inches of her, she thinks it's time for a kiss. I'm grateful for her quirky head bops and arm flapping.  I'm grateful for her loud squeals and constant laughter.  For a child with no words, she speaks to me everyday.  My Hope is that we'll strive to have a little more compassion towards others.  Embrace those who are "lost" and need love.  Remain quiet during times its easier to be loud.  We don't always have to be the strongest or wisest to be an example to others.

*Sometimes you've gotta wear it to make others believe it*

Wednesday, October 21, 2015

Where Are We Now: Milestones, Setbacks, & Progression

Holy recap!  Where have we been the last several months?  Life for us has been a whirlwind.  It has been full of celebrations!


  • Mila took her FIRST, independent STEP on July 6th!
  • She turned THREE on July 16th!
  • Mila started Preschool on August 19th.
  • She started spoon feeding herself again in September.
  • Mila WALKED about five feet, independently, on September 18th!
  • Mila got her FIRST haircut on October 20th!

  • Mila was sick for about the last six weeks.  During that time, she has been to the OR (operating room), twice, for new PE (pressure equalizer) tubes.  I'm really hoping we will not have to re-visit the hospital unless it is to get her tubes removed!  She has missed a lot of school, but the sporadic days she is able to attend, she is happy and eager to be with her friends.
  • During illnesses, Mila is typically not very vocal or active.  She is usually happy despite any physical ailments, but tends to kick it into "neutral" during her down times.  I used to be ridden with anxiety any time she was sick.  I was always fearful she would forget the things she had recently learned, or her depressed immune system would make it impossible for progress in her near future.  Now, I deal with whatever illness is at hand and allow Mila to set her own pace.  I let her choose when and what she eats, how much she walks, or what she decides to do independently.

  • Mila is walking like a CHAMP!  She doesn't walk all the time, but when she is feeling it, she will practically run.  Her stride is wider than normal, but her stability is a brick house!  She just got a new walker with bigger tires, more mobility, an easier turn radius, equipped with a seat for rest and a snazzy basket.  She used it at school yesterday and only needed little assistance.  We will mostly use it at school and out in the community.  Our favorite moments have been walking hand in hand with Mila, and without notice or hesitation, she lets go and keeps moving.  Exploring her surroundings has been our sweetest moments.
  • Feeding therapy is going great!  Her therapist, Jeanine, realized Mila's body needs a lot of awareness prior to trying new foods.  Before every session, we "awaken" her body with swinging and "jumping" on the trampoline.  Jeanine actually does the jumping while Mila's body soaks up the input. It has made the most positive difference.  She is learning how to prep the table and clean her hands before eating.  She has stopped throwing food on the floor.  Now, if there is a food she doesn't like or want to try, she simply pushes it to the side.  Recently, Mila's new foods are guacamole (what?!), greek yogurt, bean stalks (crunchy, salty "chip" made with beans-protein!), and ham.  She gagged on it so much, she ended up spitting it out.  Spitting out food she cannot chew and swallow is a "first" for Mila and a big deal for us!  Although Mila's palate will not advance here at home, I am so proud of her  efforts and progress in clinic.
  • Hippo therapy is still our "happy" time.  She has great days of riding in all positions, listening and following directions, crossing midline while tossing rings onto poles, and using sign language for communication.  We also have days where all Mila wants to do is simply, ride. I love how she lights up the second her feet hit the dirt.  I love how she squeals with excitement and impatience while she we wait for her session to start.  I love watching Mila bop her head, flap her hands, and laugh from the sheer joy, the horse's stride gives her.  I hope she will always love riding as much as I love watching her ride.
  • Mila's music obsession is stronger than ever!  Whether it's Taylor Swift, Bruno Mars, Pharrell Williams, Hickory Dickory Dock, or some good ol' praise and worship music, my girl feels every note.  She is also becoming quite the keyboard player these days.

Not only have we been celebrating the heck out of Mila, but we also have been having fun with family and friends, climbing mountains that are 14,000 feet above sea level, and getting ENGAGED! Does an engagement make us official?  I thought we were pretty official the day we met, but Michael wanted to keep a little tradition alive.  It was a sweet moment with just the three of us.