Poetry: The Dance of Lillian – Happy 16th Birthday

Team TLC Sunset Walk Damonte Ranch Trail 6.18.17 #15

I’m a month late posting this, yet I promised Lillian that I would write a post dedicated to her …. xoxo

The Dance of Lillian

She came into this world
with her own agenda.
She came missing the short
arm of chromosome number 18.

Never mind what they
thought about how
they would parent her.

They would quickly
learn no parenting
manual existed for
the lessons she was
to bring with her
through this incarnation.

She delivered the
gift of shattered
expectations early
in her Earth life
as Lillian.

She had chosen
as a mom someone
who had many uncomfortable
lessons to learn.

Patience was to
be another of the
lessons she brought
with the tiny little
body she inhabited.

She was not done yet.
The next gift delivered
flowed into their
lives as a pure
cold stream runs
through the land.

That message.
Acceptance.

Acceptance of what life
had delivered and would
deliver.

This little bundle
that grew into a bright
shining light had
many lessons bundled within.

The next was to be
release of judgments.
Oh. That one stung
worse than an unwanted
bee sting on a warm
sunny day. A sting
that lingered for
years, resurfacing
at just the right moment.

This little bundle
who could be anything
but a bundle of joy.
A bundle of anger,
anxiety, violence, and
all kinds of negativity.

With this bundle
came the lesson of
living in the present
moments of life.
Being mindful and
learning the art
of mindfulness.

Responding to this one
from the present moments
of life instead of hurts
from the past. Oh. This
was one of the hardest
lessons yet.

This had nothing to do
with this little bundle,
now a blossoming teen.
As she may have come
into this world in all
her nakedness.

Yet, she contained in
the fibers of her very
being, a Divinely pure
mirror that served to reflect
to the one called Mom
the lesson that it
was she who needed
to go within, to
confront her past,
to feel what she had
not wanted to feel,
And release it.

This would be the Mom’s
lesson of learning how to
live in the present moments
of life and to embrace the
art of mindfulness.

Four pounds and five
ounces of life changing,
life altering, life correcting
joy arrived on the evening
of September 14 2001.

Gratitude does not
even begin to describe
what the Mom feels about
the tiny bundle and she
deciding to have these
roles in this life.

The blossoming teen
was the catalyst
to teaching the mom that
she had it all wrong.
She and all children
are our awakeners.
They are not to
be pushed to the side,
put in the corner,
talked down to,
treated harshly,
abused, controlled,
barked at with commands
and “because I said so”
ridiculousness.

They are to be
respected and
treated as equals.
They may inhabit tiny
little bodies when they
first arrive.

Yet, the souls within
these tiny precious bodies
have much to teach us.
She came in missing
the short arm of her
chromosome number 18.

The lesson that encompasses
all of the other lessons
she brought forth.

Different.

She taught the mom
that she was going to be
the one who lives life
differently.

Mom learned how to live
life from the heart,
trusting the whisperings
of the heart.

She, who now enters
her sixteenth orbit
around the sun in this
Lillian body.

Happy, Happy Birthday
YOU beautiful being.
Thank you for blessing me
and being my awakener.

I Love You,
Camilla
Your Earth Mom

*******************************************

In addition to this, I thought it would be fun to link to her birthday posts over on the Team TLC blog and past birthday posts!

Happy 16th Birthday to Lillian Plus Camilla and Lillian September 2017 Date Day

She Spread Her Wings …. And Flew – Happy 15th Birthday Lillian

Happy 14th Birthday Lillian

Happy Birthday Lillian … Camilla

Blessings,

Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Amazing news! My 16 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” is arriving November 2017. Learn more and order here

Wonderfully exciting news! My 11 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

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Leaf at Sunset and Nature Box by Thomas

Thomas has been at it again creating items to contribute to getting us to the Chromosome 18 conference this July in San Antonio.

(Thomas’ older sister, Lillian, has 18p-. We plan on driving from Reno as this seems to be the least expensive option. If need be, we will take a tent and camp at campgrounds on the way down. Should take about three or four days. Thanks a million for taking a look at Thomas’ creations!)

I’m selling a painting of a leaf I made with a sunset in the background. (Added by my mom: It is made using recycled materials, acrylic paint, sealant, and made ready to hang.) Here’s a picture of it:

Thomas' Painting may 2016

I am asking for at least $20 (plus $5 for shipping if you are not local to Reno). I’ll leave the final price open to you. Please use this PayPal link and enter your amount.

I’m also selling a nature adventures set. Here’s a picture of it, along with ideas of what to do with it. (Mom added this: The possibilities of how to use this set is only limited by your imagination. You can also add your own pieces to it. Hand painted and decorated storage container made using recycled materials.)

nature set adventures idea 2

The above picture is of insects enjoying a campfire.

nature set ideas one

The above picture is of a game of bowling.

nature set ideas three

The above picture is of a soccer game.

nature set ideas four

The above is a photo of what’s included in the set.

photo 5 (78)

The above picture is the hand painted storage container made by recycling materials.

(Added by Mom: Please note this set is not intended for infants or toddlers or those who will place the items in their mouth.)

I am asking for at least $20 (plus $5 for shipping if you are not local to Reno). I’ll leave the final price open to you. Please use this PayPal link and enter your amount.

And last but not least, I’m selling prints of the mini-figure 365 Photo A Day series.

(Added by my mom: You will receive an 8 X 10 print on high quality paper. The photo series is currently being made into a book! These are being sold as part of pre-ordering the book. Tentatively titled Grand Adventures of the Biggest Little Photographer. Visit this link to learn more.)

If you have any questions, please comment here or email my mom at CamillaDowns @ gmail . com …

Blessings,

Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Did you know I wrote a book? It’s titled “D iz for Different – One Woman’s Journey to Acceptance” and you can read more about it here.

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Egyptian Eye by Lillian Darnell

Egyptian Eye 4.29.15

My 14 year-old daughter, Lillian Darnell, is selling prints of her artwork, The Egyptian Eye, to help raise money for us to attend The Chromosome 18 Conference this July in San Antonio, Texas.

Please enjoy this poem she created to accompany the drawing.

Triangular prisms sprout rainbows
From the tip of a triangle, triangles peak everywhere
Amazing colorful teeth pointing toward a catchy circle
It is an Egyptian Beauty!

To learn more about Lillian, the Chromosome 18 Conference, or to support her, go here.

Blessings,

Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Did you know I wrote a book? It’s titled “D iz for Different – One Woman’s Journey to Acceptance” and you can read more about it here.

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The Shift and Miracles

Lillian at Wilbur May Arboretum May 2016 Date Day

I feel that any time we experience a shift of perspective, it is a miracle. Also, the things most of us simply do automatically just as we’ve done a million times before ….. I feel those are miracles ….

Recently, Lillian and I decided to reduce her twice per month craniosacral appointments to once per month visits. April marks one year since we began. She started out with once a week, then in August 2015 went down to every other week. She’s making GREAT progress.

Plus, she had a great day at physical therapy on that same day. She said, “Yes” to getting on the ladder and went up one step … FOUR times! YAY!! She has quite the fear of stairs (among other things) and this was a HUGE movement forward for her.

She also told me that she is going to use the stairs at least one time at the Chromosome 18 conference in San Antonio. We’ve been to this hotel before and she already knows what it’s like. There are stairs from the lobby to the 2nd floor meeting rooms and 4 years ago we had to take the elevator every time.

On Sunday she told me that in May or June she will start crossing the foot bridge (on the trail around the lake) without holding onto my arm so that she can practice for doing it along the riverwalk in San Antonio.

Also, she wants to walk the entire Damonte Ranch Loop (about 4 or 5 miles) a few more times before going to San Antonio so that she can be prepared to walk as much as we’d like while there.

Purple Flower at Wilbur May Arboretum May 2016 date Day with Lillian

And there’s more!! She is finally in a place where is ready to think about ways to confront her fear of animals – ALL animals. We have such a hard time on our walks as it doesn’t matter if dogs are leashed or not, she still panics .. and sometimes people just don’t understand that it doesn’t matter how friendly the dog is; she has an overwhelming fear. I always pet and talk to the dog so she can observe; yet she still panics and has anxiety.

One reason she is ready to face these fears is the impact it has on where and how and when we go places and do things.

Just BEing here is a miracle …. As I am on my daily walk, I say, “I am walking on the path that goes around the lake, and this is a miracle.” … Perhaps you may want to find a way to notice the miracles abundant in every single day … xoxo

Trail at Wilbur May Arboretum May 2016 Date Day with Lillian

Blessings,

Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Did you know I wrote a book? It’s titled “D iz for Different – One Woman’s Journey to Acceptance” and you can read more about it here.

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G is for Gift

(Excerpt from my book, “D iz for Different – One Woman’s Journey to Acceptance”)

Each and every person on this Earth is unique, and holds a gift to share with the World . . . our true selves. This includes those in our society who have a handicap, disabilities, and those with special needs. Many of us keep our true selves buried deep within, as I did, for fear that we will be considered different and unaccepted. Some of us just need a little extra help in the form of guidance to nurture and grow our special gifts. Okay, maybe a lot of extra help! Everyone benefits when we let our differences and gifts radiate and glow.

Our differently-abled children simply process the world, information, and life, differently than we do; but they are in good company. There have been many throughout history who also processed differently; like Albert Einstein; Michelangelo; Thomas Edison; Amelia Earhart; and Steve Jobs, to name a few. They had amazing, life changing, life improving gifts, and were successful in spite of their label as freaks and kooks. Today the labels may have changed, but the thoughts still remain.

Lillian is a young lady who shines like no other, and has a beautiful inspiring energy about her. She and children like her teach us lessons about acceptance and change. This is one of their gifts. As an integral spoke in the wheel they can turn around societal and stereotypical views that they don’t have anything to offer; are a drain on our country’s resources; or views that they, and their family are unhappy and should be pitied.

Another one of Lillian’s gifts is showing us the benefits of embracing technological innovation, and the shift in the way we communicate. Technology can be life changing and life improving for some amongst us, and should be approached with an open mind. We no longer solely communicate with our mouths and voices as a society. A great majority of us use technology and social networking sites to stay connected, communicate, and conduct business.

On a beautiful summer day in 2009, I visited Lillian at school. Her class was at recess. As I stood chatting with Lillian’s teacher, I was scanning for Lillian among the sea of kids. My eyes landed on a petite young lady pulling a cart behind her. Yes, that was my Lillian, pulling a cart loaded with her DynaVox unit. Tears welled in my eyes, a lump formed in my throat, and my knees got weak. I thought, “There has to be something better.” I made a firm commitment to myself and to Lillian in that moment that I would find something more mobile and compact for her to use to communicate, something that did not make her stand out. I began monitoring the use of keywords and phrases like speech impaired, nonverbal, and AAC on Twitter and Google Alerts. Almost immediately I came across Twitter mentions of an application for the iPhone and iPod touch by the name of Proloquo2Go that had just been released four months earlier. Proloquo2Go is a communication solution with natural sounding text-to-speech voices for people who have difficulty speaking. I researched a bit more, went to the Apple store, and bought Lillian an iPhone. With Proloquo2Go installed, I gave it to her that day when I picked her up at the bus stop. A meeting with the school followed that same week to inform them she would no longer be using the DynaVox and would be using the iPhone instead. Lillian figured out the iPhone and Proloquo2Go within a week. This was technological innovation at its absolute best! Turning Views Foundation’s Gift-a-Voice Project was birthed from this experience (Learn more at www.TurningViewsFoundation.org).

Today, our communication methods have shifted and are literally evolving to include more of our society than ever before. When a mother of a speech impaired, or nonverbal child “hears” “I Love You” or “Mom” for the first time, it touches their heart like nothing else can. According to the National Institute on Deafness and Other Communication Disorders, 7.5 million people in the United States have trouble using their voices for one reason or another. This includes people who are nonverbal, speech impaired, autistic, hearing impaired or who have dysarthria, apraxia, or aphasia due to chromosome abnormalities, Multiple Sclerosis, stroke, Cerebral Palsy, brain injury and many other conditions.

To fully grasp the impact technology has in your daily life, take note throughout your day just how often you communicate using technology via email, text or social networking sites. If you still conduct many of your conversations over the phone, or face to face, stop and think, “How would I be having this conversation if I did not have the use of my voice, or if I could not articulate what I’m trying to say?” There are options now that weren’t available years ago. One of Lillian’s gifts is using my voice to show how technological innovation is benefiting society.

Our children with special needs are not broken, and do not need to be fixed. When we use negative words like “problems”, “cannot”, and “deficits” to define disability it is difficult to see the positive gift our child possesses. Focusing on what our child cannot do, is a barrier to seeing their gifts. When we accept that it is their “normal” to have special needs; our eyes can be opened to see our child’s gift that probably has been right there all the time.

Some will continue to only view those differently-abled as having something wrong with them and being limited. These same people won’t take the time, nor would have the patience to connect with those who are differently-abled. Unfortunately, they miss the experience of being on the receiving end of a unique heartfelt gift, a gift that only those with patience and peace can receive.

Until we have moved past the guilt stage and are well on our way to acceptance of ourselves and our children, it will be impossible to see the gift in situations, and the gift of our children, with and without special needs. No matter what, guilt gives power to the wrong thoughts and is a barrier to acceptance. Even in our most painful lessons there are hidden gifts whether we see them as such or not. The process requires patience with ourselves and not forcing the process to get over the guilt and “why” questions quickly. Guilt is a stage we simply must make our way through. Rest assured, when you arrive on the other side of guilt, you will realize the gift you hold, the gift your child holds and the gifts revealed through situations.

Tip for the Journey:

Identify and embrace your child’s strengths, needs, interests, fears and motivators. Focus on your child’s strengths and be open to providing opportunities for them to express themselves and their thoughts. Remember; don’t discount qualities that you or others find odd, irritating, or annoying. That just may be the wrapping paper around the gift they hold. Provide opportunities for them to paint, play an instrument, make crafts, dance, practice yoga, swim, play sports, write and use their hands to create.

Heartfuly Inspired,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

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Your Intuition Knows What To Write

“Your intuition knows what to write, so get out of the way.” – Ray Bradbury

I was given the wonderful opportunity to guest post on 2 Dream Productions’ blog about why I write and what led to the writing of my first book, “D iz for Different”.

Here’s an excerpt:

How Purging the Garage Led to Writing a Book

Call it intuition. Call it my gut. Whatever it’s called, there is something inside of me compelling me to write. Sometimes gently, other times strongly, it nudges me saying, “You’ve just got to share that.” I fought this feeling for a long time, thinking I had nothing meaningful to contribute. At this point in my life, I know that the treasure lying within me, the one I am to share with humanity, is my view of everyday life. I most often share this through writing.

Sometimes I question myself with thoughts of, “What are you doing? Why are you wasting time on this? Who cares what you think? Who cares what happened with you today?” These thoughts can be very discouraging and cause me to doubt myself. However, time and time again, I magically and miraculously receive confirmation that what I’m doing and the path I have chosen is inspiring and helpful to others. These powerful, undeniable moments cause my fears and hesitation to disappear.

My writing journey started …. ” (Go here to read more.)

Head on over and check out 2 Dream Productions if you are an author or aspiring author!

2 Dream Productions, Inc. is a book publicist company that specializes in working with authors and publishers to get more publicity for their books, brands and products. 

Blessings,

Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

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My Journey With Intellectual Disability and Relationships – A Short Memoir

The article I contributed to Interaction, which is a multidisciplinary journal for the Australian Institute On Intellectual Disability, has just been published. Here’s a brief description of what and why I was asked to contribute: “looking at creativity in how we work and interact with people with intellectual disability. The other theme I am interested in exploring is empathy and how this “works” within our relationship building within intellectual disability”

Excerpt from the article:

“One blood test, one phone call, one moment in time, drastically changed the direction of my life forever. I know more about genetics, chromosomes, DNA, motor skills, verbal skills, and now emotional and behavioural issues than I ever thought I would need or want to know. ……. I thought I had life pretty much planned at that point and for a while this brief phone call seemed to have caused my life to break apart like a melting iceberg with pieces scattering here and there. Looking back now, all that was brought into my life, all that occurred, all that began, and all that ended were meant to happen for my own growth and enlightenment. An enlightenment I feel spreads far beyond myself and my family as I believe we are all connected.”

Click here to read the digital version of the journal. The access code is: K9HqOa

My article is on page 30. However, the entire journal is excellent! You’ll need a chunk of time to read it as it’s short story length at around 4,000 words.

I encourage anyone who is moved to subscribe to this wonderful publication to do so! Enjoy and please feel free to share and/or forward to anyone you think would benefit! With oceans of love … xoxo

PDF version: Interaction Volume 28 Issue 4

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

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She Flew Into the World on September 14 2001

……. And she Blew out all 12 birthday candles on September 14 2013 …

Lillian literally came flying into this world on September 14 2001. She wasn’t supposed to arrive here until sometime in October 2001, but I was induced a month early as “they” were worried that she had stopped growing and assumed my placenta had quit nourishing her. If we had known then what we discovered three years later (that she has a chromosome difference called 18p- or 18p deletion), we would have known why she was so small and not growing much.

I had planned on having a natural birth in the gigantic jacuzzi style tub at the Birthing Center attached to my Ob-Gyn’s office. I had my room all picked out and had attended all of the birthing classes leading up to the big event. I was the type that when I decided I was going to do something I put my all into it. I studied everything I could find and get my hands on about natural birthing. I practiced meditating and visualizing what would be happening in my body as the birthing process began and progressed. I read about and studied Natural Childbirth the Bradley Way: Revised Edition (amazon affiliate link) and was on my way to having this baby girl the exact way in which I wanted.

Then, one month before her due date at my regular check up, they were worried that she had not grown. I was sent to a specialist who put me on bed rest for two weeks to see if that helped her grow. I used to be a full blown Type A personality and this was devastating to me. I had planned on working right up until she was born so I would have more time off. I had planned on birthing her in the birthing center. My plans were getting all screwed up and I didn’t like it! (I DID get to have Thomas at the awesome birthing center and DID get to experience a water birth for him!! I arrived at about 9:00 pm on November 13, 2005 and went home a few hours later around midnight!)

After two weeks of bed rest, she was checked again for growth. There had been no growth so it was advised that I be induced right away. We agreed and I gave instructions that I did not want any medications as I still wanted to experience natural child birth, even if I wasn’t getting to experience it in the way I originally wanted.

I kept reading my books and studying right up until we checked into the hospital on the morning of September 14, 2001. I even took some of them with me! After we got settled, the pill was inserted that would induce contractions. Later that afternoon I began having contractions. The contractions didn’t have a pattern really .. coming and going with no consistency at all.

I was doing pretty good at not giving in to the pain, instead focusing on what was happening in my body and with that precious little body  and soul inside of me about to make it’s way out into this World. At times when I began to lose focus, Lillian’s dad did a really good job at bringing my focus back to what was physically happening instead of my mind focusing on the pain.

Of all things, I worked through each contraction by chanting the vowels. I know. Crazy! I had read about the chanting and just skipped over it as I knew that was just something I would not be doing! I went with it. It was working in keeping me relaxed and letting the contraction happen instead of tensing up. I also visualized what was actually happening inside of me. That helped a great deal also.

My Ob-Gyn visited one more time before leaving and told me I would most likely be there through the night and would birth in the morning. When she left, I looked at Lillian’s dad and told him there was no way in heck I was doing this for that long. I was going to relax and have that baby NOW!

The hospital did not allow water births. However, they did allow you to sit in the tub during contractions and up to the birthing moment. I got into the tub and it felt sooooooo good. The contractions sped up rapidly as I was able to relax more and relax into the contractions. We could see Lilian moving down the birth canal headed towards the exit! I had already decided that for me and my baby and our birthing experience, a water birth was the right thing for us. I am a rule follower too, mostly. So I stayed in the tub until I knew she was about to make her exit.

When I felt her head very close to emerging, we notified the nurse that Lillian was about to be joining us. They said they’d be right down and I will never forget the look on that nurse’s face when she entered the bathroom! She said, “Oh my goodness. You’ve got to get out of the bathtub!” My immediate response was “No” as I was about to have a contraction. She reminded me that I couldn’t birth in the water and I said I’d get out after the next contraction.

I didn’t even get a chance to get my gown back on before lying down, having one or two more contractions and that little girl flew out! Literally! My Ob-Gyn didn’t make it back in time and the attending doctor had just come into the room. He said, “Don’t push yet” and I said, “Are you freaking crazy? My body says to push!” So I did and out she flew still in the safety and warmth of her amniotic sac. He had to catch her. Nature did not care if they were not ready!

I felt absolutely amazing after that .. euphoric! I kept thinking, “Oh my good golly! I just had a baby. And I did it naturally!” I felt so strong and full of energy … Like I could do anything! It’s a feeling like no other and one I have not felt since then. I have come close but nothing can match that feeling.

I was ready to go home shortly after that and they would have released me after 24 hours but Lillian needed to get her temperature and blood sugar regulated. We still didn’t know at the time that she had 18p-. I was walking down the hall a few hours after delivery and one of the nurses said, “Who are you? You are something else!”

We stayed in the hospital for 4 days waiting for Lillian’s temperature and blood sugar to normalize. We were finally released and headed home with a beautiful little 4 pound 5 ounce fairy angel!

Now as I watch her dance around the room, singing words that only she understands, talking with her imaginary friends, I think back to the night that she flew into the World.

Lilian is 12 years old now and for the first time ever at her birthday party she blew out her candles on the first try .. ALL 12 candles! This may not seem like much, but because of the shape of her mouth and lips she has not been able to blow like you and I can … Until NOW!

Lillian’s brother, Thomas, was so excited for her! You can see him about to jump with excitement in this picture. He gave her a big hug afterwards. He couldn’t help himself! Lillian does not like hugs but I think she understood and was a little embarrassed with all the fuss that he and I were making in front of her friends! I kind of like that it’s blurry because I thought for sure I’d be taking more than one and didn’t steady my hand before taking this one. I didn’t get a chance to take another … She blew them candles out!!

Here’s a video of her trying to blow out a candle from January 2011. You can see how far she’s come with this skill!

A fairy angel FLEW into the World at 11:27 pm on September 14, 2001 and twelve years later she BLEW out 12 birthday candles. On. The. FIRST. Attempt! You Go Lillian Paige Darnell, You Go!! I love you unconditionally, forever and ever, to eternity, and to the moon and back!

Latest News: 20th Annual Chromosome 18 Registry Family Conference – Part 3

Gallery

This gallery contains 12 photos.

Tweet (Thank you Steve Marshall for the picture of our sign!) 20th Annual Chromosome 18 Registry Family Conference News & Recognition Positive Exposure Research Updates Syndrome Breakout Groups Self Advocate/Sibling Mixer Moms’ Night Out Special Needs Planning Program Yoga Interactive … Continue reading

Latest News: Trains, Planes and Automobiles: 2013 Chromosome 18 Conference – Part 2


(Team TLC at 30,000 feet up somewhere between Reno and Las Vegas)

Well, almost! Buses, Planes and Automobiles!

That’s how we got from Reno, Nevada to Savannah, Georgia for the 20th Annual Chromosome 18 Conference. Southwest Airlines does not fly into Savannah and the other airlines were triple the price to fly directly into Savannah. Southwest does fly into Jacksonville, Florida which is much closer but that was $300 more per person! I tried every combination I could think of with planes, trains and automobiles. Amtrak was crazy expensive! Even more than flying. Greyhound bus and a car rental were neck and neck from Atlanta to Savannah until you considered gas for the car. Here’s what we ended up with: SW Air from Reno to Atlanta. Greyhound bus from Atlanta to Savannah. Car (via a chromosome 18 friend) from the Savannah bus station to The Marriott! Then the exact same thing in reverse to get us back home again! Whew!


(Waiting at the Las Vegas airport to board our flight to Atlanta)

The Team TLC travel adventures to the 2013 Chromosome 18 Annual Conference in Savannah, Georgia began on Friday, July 26, 2013 with an 8:00 am flight from Reno to Atlanta with a stop in Las Vegas to change planes. This was pretty relaxed and fun for all of us. Just one small incident. Lillian spilled her whole cup of juice inside her travel bag on the airplane which was interesting to try and clean up with the little airplane napkins! It would have gone off without a hitch except the juice found it’s way inside of another little bag inside the big bag and “ruined” the special index cards Lillian had decorated for her friends, Katie Baker, Rebecca Parker and IM. She was so sad and upset!


(Thomas and Camilla at our motel in Atlanta)


(Team TLC at our motel in Atlanta)

We stayed in Atlanta for the night as the next leg of the adventure was a Greyhound bus ride from the Atlanta airport to Savannah. I figured we’d be too tired to ride the bus to Savannah that same night. We wouldn’t arrive in Savannah until about midnight. This is where the fun turns into a bit more work! Getting through a HUGE airport with bags and one kid who clings to my arm the whole time. Airports freak Lillian out. She has to have a hold of my arm the whole time! We cannot use any stairs, escalators or moving walkways. They are a not happening zone with Lillian. In hindsight, I feel we would have been just fine making the trip that night. I definitely learned a lot with this adventure y’all!


(Thomas and Lillian waiting for the bus at the Atlanta airport)


(Camilla waiting for the bus)

Made it to the motel via a shuttle bus provided by the hotel. We ate some dinner, went to bed and got back up pretty early to take the shuttle back to the airport. Greyhound picked us up about 8:30 am and we were Savannah bound via a 4 hour road trip! There were only single seats available and many people were asleep. So we didn’t get to sit together but were very close. Thomas was in front of me and Lillian was across from me. The really cool thing was that we had electrical outlets at our seats and free Wifi! Very neat!


(Waiting for the bus … It was about 30 minutes late arriving)


(Team TLC on the bus …. Atlanta to Savannah)

We made one 10 minute stop in Macon, Georgia. This is where the adventure took a notch up! One of the people who got on the bus in Macon was a young man in his 20’s or 30’s who was possibly intoxicated or high on something. He sat behind and across from me.  About 45 minutes before arriving to Savannah this young man decided to tell me about his autobiography he has written … handwritten ….. over 500 pages … and he has it with him. He pulls it out of his backpack and reads a little from the introduction as he tells me that we should all ask for help when we need it. He adds this book will make him a million dollars and he’s on his way to get it published. Throughout this he mentions several times that we should ask for help along the way in life. The book is about his struggles. I’m thinking that this is so interesting. Not his book. But that he’s written this book about his struggles and keeps repeating about asking for help. I was also thinking to myself, “Dude! I don’t think you are done with your struggles yet!” So, then he finally asks me for money. I tell him I have no money to give him and we are only on this trip because other people helped us.

He went back to his seat, then goes to the bathroom and lights up a cigarette! Well, didn’t take long for that smell to make it’s way up front. About 10 or 15 minutes later we took the next available exit, in the middle of no where, at a boarded up gas station so this young man could get kicked off the bus! That was an adventure for sure! Don’t get me wrong. I was not bothered by this event or this man. I feel we are all doing the best we can with where we are in our life. Perhaps he will be done with his struggles one day and perhaps not. Either way, his life is unfolding as it should.

Finally made our way to the bus station in Savannah. Our Chromosome 18 friend, Mark Sogard from North Carolina, picked us up. Made it to The Marriott about 2:15 on Saturday, July 27, 2013! YAY and WHEW!

Thomas was such a huge help on this trip. We still had brother/sister arguing happening …. yet, he helped me tremendously. Love that wise old soul in a little person’s body!!


(Team TLC after arriving at The Riverwalk Marriott in Savannah)

Our trip back home was the exact same in the reverse order. Our Chromosome 18 friend, John Baker from Arizona, gave us a ride to the bus station in Savannah. I was a mess getting us and our luggage out to the bus. The ride from Savannah to Atlanta was quiet and uneventful.

Except for an unpleasant experience with TSA at the Atlanta airport, the rest of the trip back home was great. The TSA agent wanted each of the kids to hand their ticket to her instead of me handing all 3 tickets to her. This confused them as we had not had to do this before … especially Lillian. The TSA agent then asked them questions which confused them even more! Some stranger asking them questions about their name and where they are going! Thomas told her we were going to Vegas! Huh? Poor kids! Of course she couldn’t understand Lillian. I told the agent Lillian had a speech impairment and she would not be able to understand her. So she went ahead and asked her even more questions. After that incident Thomas and I were finishing off our water before we made our way to security. This frustrated Lillian even more as she thought they were making us waste our water! Then the TSA agent at the scanner rushed both of them through.

That did it for Lillian. She was holding back the tears. I had to spend 10 minutes after we got our stuff together sitting on the bench just past security calming her down. The whole TSA experience was very upsetting for her.

All was well again by the time we got on the plane and headed for home ….

Something I learned: Don’t sit in the back of the bus!! You will smell scents you never wanted to smell and be prepared to encounter some interesting and colorful humans! AND Some TSA Agents + special needs kids = Frustration and Meltdown

Go here for the first installment and Part 1 of Team TLC 2013 Adventures to the 20th Annual Chromosome 18 Registry Family Conference.

Go here for the last installment and Part 3 of Team TLC 2013 Adventures to the 20th Annual Chromosome 18 Registry Family Conference.

Go here if you’d like to see more pictures of our adventure …