Tag Archives: Chromosome 18

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: 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.

Team TLC Custom Stretch Bracelets

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My 7 year old son, Thomas, and 11 year old daughter, Lillian discovered my stash of beads in the garage. I went through a short lived period in 2007 making stretchy bracelets as a creative outlet. They have decided they will make bracelets to earn money to attend the 2013 Chromosome 18 Conference this July in Savannah, Georgia!

Each bracelet is custom made when you order. Team TLC bracelets are made with different combinations of Swarovski crystals, fresh water pearls in beautiful, traditional, cool and funky colors, nut beads, lava beads, hematite beads, and much more. Not all beads previously listed will be used in each bracelet. We decide how and which beads to use for creating your bracelet according to your favorite colors. You can also choose to have an acrylic or Czech Pressed Glass Bead number 18 included on the bracelet.

Visit The Team TLC website to learn more about the bracelets and visit the article titled “Why It Matters” to learn more about why this is so important to us …..

Journey to Magical Moments – The 19th Annual Chromosome 18 Conference

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Another summer and another Chromosome 18 Conference has come to an end. Another journey of adventures with crazy luggage, stairs, peaceful strolls along the Riverwalk, laughter, tears and …. magical moments. A journey to a place where not everyone knows … Continue reading →

I Wish I Wasn’t An 18p- Girl: Moment of Defeat – Take Two

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I’m pretty sure Lillian has said something like this at least once in the past. I’m not sure exactly why, but this time it felt like a punch to the gut.

Lillian falls frequently due to depth perception and balance issues. She fell pretty hard on the tile floor tonight, and this is what prompted her to make the, “I wish I wasn’t an 18p- girl” statement. She’s okay. Got one heck of a bruise on her elbow. I told her it was okay to feel like that and to wish she didn’t have 18p-. I also told her that 18p- is not who she is. I told her she is Lillian, and 18p- is just a special quality she has. She smiled and said, “I know.” Twenty minutes later she was fine and had forgotten all about her comment.

I didn’t though . . . Guess you could say this is my Moment of Defeat – Take Two.

The moment after she was in bed, I had that “time standing still” feeling and the tears began flowing. I began to question everything I’m doing, my belief system, my thought processes. I had the “Who do you think you are?” and “What are you doing?” thoughts in the mix too. The last time something like this hit so hard was in May 2010. I wrote about it here: A Moment of Defeat.

Why? Why did this statement, on this particular night, this particular week have this impact on me? Maybe partly due to the book I’m about to release in which I share about myself, my past, my thought processes and my belief system. I’m on the edge, facing some fears and taking hold of that vein of courage within me. Then, I’m sucker punched by one little statement from the little girl who inspired me to “be” where I’m at and to write this book.

Maybe partly due to needing a break from this beautiful young lady. Maybe partly due to feeling a bit guilty as I’ve not shown patience lately in understanding what Lillian is trying to say to me. Guilty because there are times when I cringe when I hear her begin to speak to me. I know I will not understand half of the words she speaks and I will have to focus 100% on what she’s trying to say and it will take double or triple the amount of time to understand one little sentence . . .

**LOVE OFFERING** If you find this content helpful, I invite you to toss a tip in the love offering bowl. With oceans of gratitude … Camilla ….

love-cards-in-a-basket-october-2016

Yep, this one hit hard. Only for a moment though (well, okay, maybe a few hours!). I remind myself that I DO exhibit patience more times than not, I DO choose to have a sense of humor and laugh about it with Lillian. I remind myself I KNOW why I wrote this book. I KNOW that my belief system and thought processes are right for me as this is what brought me to the acceptance and happiness that has always been right here within me. I remind myself that I am sharing it with others in the hopes that something I’ve written will give someone hope, encouragement and inspiration. I remind myself that just a few hours earlier a little girl with wisdom filled eyes looked in mine and said “I know.”

 

Different iz Good . . . Spread the Word

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It’s time to begin unveiling The Turning Views Foundation and the Different iz Good™ movement.  Those of you who know me know that I’m Mom to Lillian Darnell, 9 yrs old, and Thomas Darnell, 4 yrs old.  Lillian has a Chromosome 18 abnormality called 18p-.  The  main way in which this manifests is that Lillian is speech impaired (she’s about 90% unintelligible). Lillian uses an iPhone with an AAC Application called Proloquo2Go to speak.

Turning Views Mission is To Empower Those With Genetic Differences by giving them a voice, helping them to be a part of the conversation like NEVER before! Turning Views Slogan is Different iz Good . . . Spread the Word!

Our main goal is to provide nonverbal or speech impaired children with an iPod Touch or iPad with the Proloquo2Go AAC Application (or similar) installed and all needed accessories.  In addition, to train caregiver and/or the child how to use the device.  Another goal is to hold workshops in conjunction with schools and speech therapist to educate regarding this technology.

This device and application are life changing in an unbelievably good way for the nonverbal and speech impaired.  Insurance companies and Medicaid do not cover these.  The alternative up to this point have been heavy, bulky devices that cost anywhere from $7,000 – $10,000.  One can have an iPhone or iPod Touch with the Proloquo2Go application installed and all needed accessories for around $600 – $1,000.

One additional major aspect of the Turning Views Foundation is to educate how technology combined with Social Networking sites improves quality of life for special needs children ~ especially nonverbal and speech impaired children. The way in which we communicate and conduct business has fundamentally shifted and changed forever.  It is my opinion that the World has shifted in such a way to include the speech impaired like they have NEVER been included before.  We are no longer solely communicating with our mouths and voices.  A large portion of the population is communicating using technology and social networking sites.  The speech impaired are now able to be a part of the conversation like NEVER before.  Their community and those they can engage with, socialize with and conduct business with has grown exponentially.  A second phase to our mission is to facilitate the making of entrepreneurs of those special needs children, teens and young adults who choose to pursue this exciting venture.

Different iz Good . . .  Spread the Word ~ we will be rolling out tons of DIFFERENT and fun ways for y’all to help spread the word.  I invite anyone who knows a special needs child, teenager or young adult (and even they themselves) to post a video reply on the Different iz Good YouTube channel telling us why Different iz Good, Different is Beautiful and Different is OKAY or what it means to you.

I believe Lillian is different for many reasons.  She is a special young lady who shines like no other and has a beautiful inspiring energy about her.  She is here to teach me and the rest of us some lessons.  One of which is to embrace technology and the shift in the way we communicate or at least approach with an open mind to how life changing this is for some of those amongst us.

Spread the Word Y’all ~ Different iz Good!

I want to steal a  bit of space here and thank a ton of special wonderful motivating and inspiring people for encouraging me and being a part of the creation and birthing of the Turning Views Foundation and the Different iz Good movement.  First, and foremost, Susan, a fellow 18p- Mom.  When I came across the phrase “different is good” in something she had written about a year and half ago, I asked her at the time if I could use that phrase on t shirts.  {Thanks Susan ~ you are a beautiful, smart and amazing Mom to IM.} It has since grown into the slogan for this 501(c)3, Turning Views Foundation.  My wonderful and supportive family who at times, I’m sure, wonder if I’ve lost my mind!! My Chromosome 18 Family ~ having y’all there means more than could ever be expressed in writing.  My eWomenNetwork Family ~ Love y’all to pieces – many times y’all are my glue and facilitate my Glow!  My friends from Oaklawn Junior High (Houma, LA – way down in da bayou) ~ I’m blessed to have y’all in my life!  Friends from my past and my newest friends and supporters.  Thanks a million to all of you!