Tag Archives: 18p-

F is for Flexibility

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(Excerpt from my book, “D iz for Different – One Woman’s Journey to Acceptance” – published 2012)

Flexibility, fun and faith . . . that’s a trio I definitely want in my life!

There are times in our lives when fun does not fit in with what’s going on! It’s not possible to always have fun, or find the joy in every situation. However, it is possible to be at peace with the experiences life deals us. To be at peace is to be in a state of acceptance, and be present and attentive in the here and now. Once we have achieved the place of acceptance it is easier to see the joy, humor, and fun in the everyday happenings of life, and ultimately have faith.

With each passing day acceptance becomes easier. I am more attentive and present when Thomas and Lillian are talking to me. I am really listening to what they are saying. Sometimes, I must admit, it is just plain funny! One morning Thomas, Lillian and I had a conversation that each of them are actually aliens from Planet Mercury. They told me they are just here visiting and will have to go back home soon. We had a thirty minute conversation about their home planet. I told them I would miss them so very much when they go back home. They said they would miss me too. After breakfast they began packing for their return voyage back to Mercury. Not your typical Saturday morning breakfast, but we had tons of fun using our imaginations. I choose to stimulate their imaginations instead of discounting what they say. Being able to call upon their imagination is a skill I want them never to lose.

As often as possible, I attempt to create an adventure out of as many minutes, hours and days that I can. It may sound like a lot of work, but really, it doesn’t have to be. Adventure is what one makes it. If we remind ourselves to be flexible and think simplistically, it isn’t hard at all to create adventures. I find great fun in turning a simple task or event (something we are already doing), into an adventure.

Something as simple as going to the library can be made into an adventure by having a scavenger hunt for certain types of books. One day, I had Thomas and Lillian make a list of about five places or things they wanted to see, or find. We had a great time driving around all day to parks and stores finding the items on their lists. We didn’t buy anything, but I marked their success by taking a photo of them in front of the place, or with the item they found (you can see some in the photo gallery).

Being flexible decreases stress, and allows us opportunities to be creative. Flexibility also serves us in releasing our attachment to rigid expectations. When we choose to be flexible rather than rigid, it is much easier to accept change when situations do not turn out as we may have planned.

Flexibility is a characteristic that serves me well as a parent, definitely as a mom to a child with special needs, and in life in general. I am sorry to say that the old Camilla was not a very flexible person. Things had to be done my way, or someone was going to pay! I cringe when I think about how rigid, and inflexible I used to be.

The awakened Camilla has learned the wonderful quality of being flexible. To some, it may seem like indifference when I shrug my shoulders, or turn the other cheek, but through practice, I have learned to be okay with whatever happens.

F is for Fear

I could not let this chapter be complete without mentioning fear. Fear is something that every parent experiences. In fact, everyone has fears. Parents of children with special needs have an entirely different set of fears, and then some, compared to parents of kids who develop typically. Fear is one of the stages we move through when we first learn of our child’s diagnosis. These fears can get the better of us if we are not managing our thoughts in the present moment. For instance, we may take one little comment from a doctor, nurse, parent, or friend, and let our mind run away with it. We fabricate in our mind what the future would be like; what about the next time …next week…next year…from now to when our time here is over? I am not saying we shouldn’t make plans for our family’s future. Make those plans, get everything lined-up, and set in the best way for your child with special needs and their siblings. Just remember not to always play out future events (school, friends, sports, marriage etc.) in your mind.

Learning to have faith in myself, and the decisions I make has absolutely helped me along this journey. Even though I still experience moments, days, and even weeks, when my faith in myself gets weak, I never ever fully lose sight of it. Having a rock solid faith in ourselves, is the foundation for the journey we are traveling.

Tip for the Journey:

Learning to be flexible comes with patience and practice. Choose one situation a week to be flexible about. Then take it to one situation per day. Each morning when you wake up, say to yourself with love and joy, “I choose to be flexible today.”

Developing the habit of having consistent, strong faith in yourself and your choices will only come with time and practice. To battle being your own worst critic, put sticky notes on your mirror, in your purse, in your car, and wherever else you need them, with reminders that you are amazing, you are perfect the way you are, to have faith in yourself, trust your path and trust your intuition. Choose whatever phrases or quotes are meaningful to you and put those on the sticky notes also. It can be hard to keep faith in ourselves; but the more we practice being kind, the quicker we will pull ourselves out of those times when we lose the faith.

Heartfuly Inspired,
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

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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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Latest News: Sixth Annual Lillian Presentation

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Lillian’s birthday and the dawn of a new school year are upon us. This was the sixth annual “Lillian” presentation to her classmates. It began in the first grade because her classmates kept asking me “why” questions about Lillian. I figured why have them wondering and drawing erroneous conclusions and choosing to judge her when I can try and help them understand.

The presentation went GREAT! I got lots of questions and one sweet young man bought a copy of my book, D iz for Different, for his aunt. He has a cousin with 22q-. So sweet!

I like to share my presentation publicly because so many other parents are curious about this and some want to take the plunge and do their own presentation. Please use it as you need. I only ask that you let people know where you got the idea or information.

These are my raw notes for the presentation. I add to or skip information as I feel needed.

Lillian and Being Different

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.” – Henry David Thoreau

(Slide 1) Chocolate Candy Recipe ~ Each chocolate has a recipe – all use cocoa, and dark or milk chocolate

What ingredients make chocolates so different?

Fruit – Cherries, Coconut

Nuts – Almonds, Cashews, Peanut, Hazlenuts

Flavorings – Vanilla, Orange, Strawberry

We are like chocolates – we each have our own special recipe with special ingredients that make us DIFFERENT, UNIQUE, BEAUTIFUL AND AMAZING.

Chocolate recipes are usually in a book or written on paper or even in someones head. Our recipes for our bodies are in our genes.

Genes are our recipe for our bodies and they decide:

(Show book … “You’re Full of Genes” by Claudia Zylberberg Ph.D.)

Brown or Blue Eyes
Short or Tall
Straight or Curly Hair
Need Glasses or Not
Have Freckles or Dimples
Have small feet or big feet

Genes decide EVERYTHING about you and your body and how the parts should work. If some genes are missing or duplicated this decides whether something with our body doesn’t work.

Another way to explain is that genes are all of the instructions the human body needs to function.  All of our bodies genes are organized into structures called chromosomes.

(Slide 2) Let’s look at this like a Chocolate Candy Cookbook.  If the recipes are genes, then each chapter (Chocolate with Nuts Chapter, Chocolate with Fruit Chapter) is like a chromosome.  The chapters, or chromosomes, make up the book – in our case, the book of life.

(Slide 3) Chromosome, DNA, Gene Slide

(Slide 4)  There are 22 numbered pairs of chromosomes, plus two sex chromosomes (male or female).  Each chromosome is numbered and each chromosome has a waistband.  The waistband separates the short arm (p) and long arm (q) of the chromosome.  (slide 4)

(slide 5) Lillian has a very unique recipe (genes) unlike any of you.  A section of her recipe is missing – deleted (called a chromosome abnormality).  A piece of her #18 chromosome is missing – the short arm of her #18 is deleted, so it’s called 18p-.

What happens if you leave out an ingredient for a recipe?

(slide 6) Lillian has to work harder at doing many of the things that are easy for you. She’s had to do this since being a baby.  Things like turning over, holding her head up, crawling, walking, making sounds, cutting with scissors, eating, writing, talking.

Lillian’s mouth has to work so much harder to chew and swallow and speak.

Her hands have to work harder to do things like writing, cutting, make crafts, opening packages.

Her body has to work harder at walking, running, and staying balanced.

She’s very nervous, startled and scared about loud sudden noises (thunderstorms, fire alarms for drills, helicopters)

Lillian uses an iPod Touch with an application installed that allows her to type in what she needs or wants to say and press a speak button. Talk about Proloquo2Go. She can also simply type what she wants to say in the notes section or texting section of the iPod. She doesn’t really use P2G as much as she did when she was younger.

Lillian has all the words and things she needs and wants to say in her mind. She has problems articulating it (saying it) clearly.

She is just the same as the rest of you in many ways. She likes to read (mysteries, non-fiction books and friendship books), loves listening to a variety of music, she likes french fries, hot dogs, meatloaf, donuts, and she loves going for walks, taking pictures, and telling and listening to jokes.

Lillian loves the stars, moon and sun (astronomy) and loves dancing and just being silly. She’s passionate about the weather. She tracks the weather every day!

I want to share some ideas and thoughts with you on how you can be awesome, supportive, and helpful friends and classmates to one another and to Lillian! I want to make sure you understand I’m not solely talking about Lillian with how to be supportive. This is for all of you.

Encourage one another if you see any of your classmates or Lillian having a hard time.

Lend a helping hand if you see one of your classmates struggling.

Be patient with Lillian if you don’t understand what she has just said ~ encourage her to use her iTouch to tell you what she’s trying to say or write it down or verbally spell the word for you.

Be patient with one another too.

Take that first step and ask Lillian what she did over the weekend or about her likes, dislikes ~ questions you would ask your fellow classmates and friends.  You will have to wait longer for an answer; but the good feelings you get from showing kindness and friendship to someone who is a little different will outweigh the amount of time it takes Lillian to respond.

This goes for any of your classmates. If you see a classmate all alone, take that first step. Go over and start a conversation with him or her. Also remember to respect if that person chooses to be left alone. Some times we just need alone time.

(Slide 7 & 8) Team TLC and Different iz Good

Now, let’s switch gears a bit and talk about being different. It’s okay to be different. It’s okay to be YOU.  We all, at some point, feel like we don’t fit in and feel like we are different. That’s because we are. We are uniquely us, we are just as we were meant to be.

Most times we chase after trying to fit in. Fit in with the cool kids, the loud kids, the fun kids, the popular kids, the crazy kids. You may not understand this now, but chasing after trying to fit in comes back to haunt us later in life. It becomes a habit and then we chase after friendships, relationships, careers. The easiest and most fun route to take in life is to just be YOU and be grateful for whatever it is that makes you YOU!

Before we can accept and be kind to others and to those with differences, we must first accept and love ourselves. We must be kinds to ourselves and know that we are awesome and special … each and every one of us has something that is special and unique about us. Some of us are just shy about sharing it with others.

When I was your age I was uncomfortable with my name because no one could pronounce it right when they first met me or when trying to pronounce it for the first time. It made me stand out and I was not comfortable with that. I was also always the tallest kid in my class and I had these ginormous lips! Don’t get me wrong I love my name, my height and my lips as an adult; but when I was your age I was uncomfortable with my name and I got teased about my lips. That didn’t feel good at all. I sure would have handled it better if I’d had someone sharing this message with me when I was your age.

Different is okay. Different is Beautiful. Different iz Good. The more we let our differences and our uniqueness shine and share it with others, the more we encourage others to be themselves. We create a ripple effect that spreads further than we even know.

Let me give you an example of how to accept and love yourself …. Look in the mirror and say out loud .. Camilla, I love you. I love your crooked front tooth. That tooth allows and helps me eat all kinds of delicious and nutritious food. I love your kind heart. It helps to brighten the day of other people. I love your vericous vein covered legs. Those fabulous spider vein legs help you get where you need to go, take you on beautiful nature walks, allow you to drive your car, and most especially they help you to dance!

If this doesn’t feel comfortable you can always write a letter to yourself saying the same things. Gratitude for our own self and body allows us to spread kindness and non-judgment to our classmates and friends.

I believe in a world where we all empower each other, a world where we are each other’s biggest supporters and our greatest cheerleader, a world where we are taught to celebrate one another’s gifts and differences, not to be threatened by them. I believe in a world in which we use our energy to solve the world’s problems and inspire others to do the same, where we recognize one another’s limitless potential.

How boring would our World be if we were all the same? It’d be like living in a World full of only Milk Chocolate …. No chocolate with nuts, no dark chocolate, no chocolate caramel, no chocolate with fruit …. Boring!

(Slide 9) Different iz Good . . . . . Spread the Word!

Slides:

Parent letter provided to teacher to email or send home with kids:

September 10, 2014

Dear Parents:

My name is Camilla Downs.  I am Mom to Lillian Darnell, one of your child’s classmates in Jane Doe’s class. Today I gave a presentation to the class about Lillian and her differences. I began giving this presentation in 1st grade as Lillian’s classmates were asking me questions about her.

I figure why have them wondering and drawing possibly erroneous conclusions about Lillian when it can be somewhat explained. I have changed it a bit every year to keep pace with the increased knowledge and understanding of the students.

I talked with them about how different ingredients are used to make chocolate candy taste unique, and how each of us is made up of different “ingredients” that make us unique. We discussed how each of us has “ingredients” or qualities that make us different and how, specifically, Lillian is unique and different.

Lillian has a rare genetic disorder called 18p-. She is missing a portion of the short arm of her chromosome #18. The main way this manifests is that Lillian is speech impaired – her speech is hard to understand. She uses an iTouch with an application installed that allows her to input what she wants to say (AAC Application called Proloquo2Go – Yes, they make an app for everything!).  She presses the “speak” button when she’s done inputting her sentence/thoughts and the iPhone speaks it. **Update** Lillian used to use this very often. She now prefers to try to be understood verbally by spelling out each word if it is not understood by the listener. She can, however, use the iTouch notes feature or any other feature that allows her to type the message and then show it to the listener.

I also wanted to let you know a bit about Lillian so you can possibly help your child understand in case he/she asks you questions about Lillian’s differences.  Lillian is a very bright young lady; although, she does have problems grasping math due to18p-. She’s also a bit slower and awkward doing just about everything.  Her body just doesn’t move as fast as the typical child.

I ended the presentation with a message for all of the kids that in order to accept others and their differences we must first accept ourselves and what is unique and different about ourselves. I shared my personal experience as a young child and shared the message that Different is Okay and that Different iz Good. I shared my view that we are all perfectly flawed and that is what makes each one of us the unique person that we are.

I also take this opportunity to share about non-judgment and compassion for one another. I give the students ideas about how to support one another.

If you are interested and would like to see the presentation, it is posted on my blog at the website listed below.

Please feel free to email or call me if you have any questions.  If you and your child want to learn even more you can visit www.Chromosome18.org.

Thank you!!

Camilla Downs

The recipe idea for the presentation was adapted from another Chromosome 18 Mom, Melanie Gorrell. She uses cookies in her presentation … I LOVE chocolate, so I use chocolate. The parent letter is also adapted from Melanie’s parent letter.

Inspired Living: Believe in You

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In June of 2012 my daughter, Lillian, recorded herself singing a song of her own making titled “You Can Believe in Yourself.”

Today seemed like the perfect time to share it with all of YOU! I think you can understand it enough to get the message! May it bring sunshine to your day … xoxo

*Lillian has a chromosome abnormality simply called 18p-; which means she is missing a piece of her short arm of chromosome #18. The main way it manifests for her is that she is speech impaired. 

She Flew Into the World on September 14 2001

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……. 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!

Inspired Living: Be Inspired

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Sunset adventures. Team TLC went somewhere different tonight! Lillian did NOT want to get out of the car or climb up the gigantic rock with stone steps and no rail. I talked her into it with Thomas holding her other … Continue reading →

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

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(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 Session … Continue reading →

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

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(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 …

 

Latest News: Thank YOU – Team TLC 2013 Chromosome 18 Conference Fundraiser – Part 1

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Team TLC returned from the Chromosome 18 Conference on Friday, August 2, 2013. It was a great and heart warming experience for all three of us.

First, and most importantly, I have overflowing gratitude for the people in our lives who took part in the Team TLC fundraiser to get all three of us to the 2013 Chromosome 18 Conference.

Without your support, love and kindness our trip would not have been possible. Some of you purchased custom created stretch bracelets from us and some of you chose to donate money towards the trip. Sending thanks, smiles, and warm hugs on wings of pure love to each and every one of you ….

Robert Downs
Tim Bishop
Frank & Patty Romano
Connie Wilson
Peg Flowe
Katie Sprister
O.C. Gillham
Kathy Borello
Suzanne Bean
Robin Mayfield
Roberta Verdun
Lauren Bradbury
Robin Kehoe
Loretta Bonilla
Cheryl Donlan
Deb Yocum
Nora Schaefer
Cassie Salsberry
Lillie Salsberry
Carolyn Smith
Cathy Diver
Lisa Glazier
Rachel Flower
Melanie Gorrell
Roxane Daigle
Alisha and Steve Peters
Sandra Ozment
Dawn Ward
Tony Hightower
Mackenzie Banta

In complete and open honesty I had chosen not to be attached to attending the conference this year. I would be happy if we attended the conference and I would be happy if we didn’t attend the conference. However, my two absolutely fabulous kids, Thomas and Lillian, had their heart set on it. I talked with them up until nearly a month before the conference about not being too attached to going.

Making the bracelets was Thomas’ idea. Once we began the fundraising and sharing on facebook, the response was so overwhelmingly positive that I saw an opportunity to help Thomas and Lillian experience and be a part of the unfolding and manifestation of what they desired.

It was extremely moving receiving such enthusiastic support from our friends and strangers alike. Especially with the support of some of our Chromosome 18 friends who would not be able to attend, yet chose to support our efforts to get to the conference.

Team TLC at the Reno/Tahoe Airport ready to leave for our 2013 Chromosome 18 Conference Adventure!

We had a great adventure traveling to and from the 20th Annual Chromosome 18 Conference. You can read about our adventure here.

Thank you, Thank you, Thank you …… With oceans of gratitude …. ♥

Go here for the second installment and Part 2 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 …

 

Why It Matters: 20th Annual Chromosome 18 Conference

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Why does this matter so much?

I’ve been carrying on a great deal about the upcoming Chromosome 18 Conference this July in Savannah, Georgia, thought I’d take a minute to touch on why this is so important to us.

A sense of belonging, of being amongst our own tribe, is one of the reasons this matters. The conference is packed with back to back educational and informational sessions covering areas concerning infants, toddlers, kids, transition age and adults. Sessions about sensory processing, physical and occupational therapy, speech therapy, growth hormone, special needs trusts, IEP meetings, transition, updates regarding research, feeding issues, and much, much more. There is a separate track for the Self-Advocates, as well as a separate track for Siblings. There is also more bonding time after daily sessions are over with a Mom’s night out, Dad’s night out and an outing for all families together.

Lillian’s only friends are her chromosome 18 friends. She texts, emails and writes letters to and with them. They get to see each other face to face at the conference. The bonds they have established grow and deepen. They get to swim together, eat together, be silly together and perhaps even talk about their parents and siblings together with someone who GETS IT! They understand each other. They feel comfortable with one another. She has friends all over the World due to a difference in one little ole chromosome.

I’m excited about the opportunity for Thomas to meet other siblings, share with them, form new friendships and know that he is not alone in the path that he travels as sibling to Lillian.

We learn, we grow, we bond, we are inspired, we laugh, we cry, we come home with information we can use. We each go home knowing that we all belong, knowing we are not alone, knowing that we have a special something in common through an uncommon chromosome.

I wrote an article upon returning from the 2012 Chromosome 18 Conference which details even more of the reasons why this matters to Team TLC. Go here to read about our Journey to Magical Moments.

Thomas and Lillian have decided they want to help get Team TLC to Savannah this July. They stumbled across something in our garage that they decided to get creative with … You can read about it here.

For anyone who does not know us, here’s a little more information. Lillian, my 11 year old daughter, has a genetic difference referred to as 18p-. She is missing a piece of her short arm of chromosome number 18. This affects 1 in 50,000 people. The Chromosome 18 Registry & Research Society provides an online venue, private and public, for us to connect. They perform genetic research and are there to guide us and answer our questions. The Registry is located in San Antonio, Texas. It exists because a Mom, Jannine Cody, was told about 20 years ago that her daughter had 18q-. Her advocacy, strength and courage led to what we have available to us today. You can find even more information by going here.