Tag Archives: 18p deletion

A Rapturous Dance With Life

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Lake Mead July 2016 #15

I did it. I did it. I did it.

I drove Team TLC 3,400 miles. Thursday, July 7, 2016 through Saturday, July 16, 2016 I drove 3,400 miles roundtrip to attend the Chromosome 18 Conference – Reno, Nevada to San Antonio, Texas .. 1,700 miles each way. A conference Thomas and Lillian have their hearts set on attending every year. We began attending the C18 Conference in 2009 when it was in Las Vegas and have gone every year since then.

We arrived home at midnight on Saturday, July 16th. I was kind of it out of all day Sunday. Then Monday, I woke up ready to go! By Monday afternoon, every muscle in my body ached and I felt weighted down. I was completely out of it for 4 full days. It took about 7 days before I felt like myself again.

Yet, I DID IT!! … xoxoxo

The plan was to leave at 5:00 am on Thursday, the 7th, so that I could drive as far as possible before darkness fell upon us. I am completely out of my comfort zone driving in the dark in unfamiliar places. I could not get to sleep the night before. I was worried and having anxiety about this trip due to finances, honestly, not even having enough to cover the trip.

Yet, I know how deeply important this conference is to Thomas and Lillian. Each for their own reasons. Thomas is the sibling to a sister who has a chromosome deletion. He has, and is, developing deep friendships with the other siblings his age and being mentored by the older siblings.

Lillian’s friends are her peers that she has connected with through this conference. She communicates with some of them all throughout the year. When one texts, blogs, post on Facebook and Instagram, emails, chats on Facebook, or uses skype; the spoken word is not needed.

In our world of verbal communication difficulties, social media has helped create a world that would not exist for Lillian and one where she has true friends. She has no local friends, yet she has friends all over the United States and the world … As far away as Tasmania, Australia.

C18 Trip July 2016 #17

After having about 3 hours sleep, I could not seem to get ready as I was overwhelmed with the enormity of this trip. I had an adult meltdown which delayed our departure. We were finally on our way at 7:00 am; two hours later than I had planned.

There was much excitement as we began the road trip. Lots of talking, observing the landscape, and silliness. About two hours into the morning, we lost cell phone service due to the rural area we traveled. We were without cell service for the next five or six hours until we reached Las Vegas. During this time, Thomas and Lillian became absorbed in reading books, magazines, or using their computers or phones.

Which left my mind much time to mess with me. I had stepped way out of my comfort zone with this trip. I had never driven this far, much less driven this far being the only one in charge of packing, driving, and navigating. Plus, we had never driven this far as a family. Our max road trip travel time was to the 2015 conference in Salt Lake City; which was about an 8 hour drive from Reno.

Thoughts of us being stranded due to car problems kept entering my mind like a dark storm cloud encroaching on the brightest of days. Thoughts of the lack of finances for this trip took their turn in the dance also. Not to be left out of the dance, thoughts of my insanity at attempting this cut into the dance too. All of this dance to be completed with the veil of anxiety and worry weaving in and out like a breeze blowing through the trees.

Thankfully, I am a student of mindfulness and emotional connection. And, since there was nothing else to do but sit and drive, I took this opportunity to put these practices to work. It was a rapturous dance between being mindful, connecting with emotions, and embracing the fear wanting to dance with me.

This trip proved to be challenging. I had not anticipated this dance with life in all of its flavors and colors in such a way to cause the suffering brought on by my thoughts. It was my goal to have this trip be a learning experience for me of not knowing, not planning, and just going. That’s certainly not for everyone.

Yet, I felt this was important for me. It’s a huge step out of my comfort zone. One step closer to trusting myself, trusting internal messages, and letting go of how it’s supposed to be done. As mentioned earlier, I’ve never driven this far alone … Much less alone with Thomas and Lillian. In addition to driving this far in Rosey, our 15 year old car, with dancing through this trip on less than a shoe string budget and letting go of worry that the string will hold tight.

I had moments where I was so extremely hot and exhausted I had visions of taking an ice bath and moments when I was so tired I was shaking and wondering what in the heck I was doing ….. Yet, I know. I may not know on the surface right now; but deep down, I know why I do what I do.

This was also a dance full of wonderful, bright moments. We shared inspiring comments and tons of love that furthered each one of us. Definitely some amazing growth for all of us happened! WOW!

We had a ball and laughed tons and enjoyed the beautiful landscape as we drove by it. Lillian was being so helpful and encouraging Thursday morning before we left.

Thomas was awesome and inspiring with his comments as we drove the two lane highways in the middle of nowhere in Nevada and Arizona. We saw a huge sign that read, “Nothing” and had a great laugh about that! Just after driving through Boulder City and Hoover dam, Thomas said, “I love it here.” He was so impressed with Lake Mead and said he wanted to live there.

Thomas went on to say that he always has deja vu and he has lived this life before. He said it all seems so familiar. He was incredibly inspired by the beauty that passed before our eyes. He also commented that he wants to buy land and simply let kids play on the land.

On the first day of driving, Lillian got sick to her stomach. We ended up spending about 30 minutes at a gas station bathroom and Thomas was extremely helpful. When we were looking for a place to stay and it kept getting darker and darker, I apologized to them as I had planned on stopping sooner. He said, “When you get a rock in your shoe, just shake it out.”

Rosey did a pretty good job. She had a wee bit of problems getting overheated but that was resolved with turning the air conditioner off while traveling up and down the mountainous areas. I had to give her some oil and coolant on the way there and some oil on the way back home. It’s scorching hot checking oil and fluids in over 100 degree weather!

With an hour and a half to go before we arrived in San Antonio, the epoxy glue I use for the driver side mirror had enough of the heat and was simply melting away! A couple of years ago I bumped the mirror backing out of a covered parking spot. So, for about 20 minutes I was holding the mirror until I could pull over. Bungee cord to the rescue!! Before we headed back home, the hotel gave me duct tape and that worked great for the ride back home.

I feel strongly guided to be establishing a new relationship with myself and the world and to model this for my kids, have them actively participate, and to help them know that there’s more to life and living than traditionally meets the eye.

I want them to never lose touch with their true self and to grow into adults knowing their given talents and having a solid and clear courage and conviction in sharing that talent with the world!

I continue to learn so much daily … About me, Thomas and Lillian, others and simply just living and dancing with life! xoxo

C18 Trip July 8 2016 #1

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

Wonderfully exciting news! We’ve completed the first book trailer for my 10 year old son’s, Thomas Darnell, upcoming book, Biggest Little Photographer. You can learn more and pre-order here.

I is for Improvise

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

We all improvise on a daily basis. We just aren’t aware of it because it happens so naturally. When we have spontaneous conversations with people during our daily interactions we are improvising. Our dialogue is not “memorized” or practiced. Tapping into this natural improv skill has helped me in dealing with my kids and with not-so-great life situations.

People tell me it makes them tired just watching all the adventures my kids and I have. We really don’t do that much. It just seems that way to those on the outside of our little world. By nature, I am an introvert. I love staying home; but I also know I want my kids growing up learning that you can turn just about anything into an adventure. Be spontaneous. Making things up as we go along is the ultimate adventure. It may not be possible to do this all the time, but with practice you can incorporate it at every opportunity. Our kids will learn how to tap into their own improvisational skills the more they see us doing it. By our example, they will learn how to turn the everyday into an adventure and how to cope when things don’t go their way.

Recently we arrived at an event that my kids had been anticipating all day. As we got closer to the building we saw a line that snaked around the entire building. There was no way I was going to stand in that line. Fortunately, Thomas and Lillian agreed; but they were still disappointed. This was an opportunity to improvise and save the situation. On the way home we stopped at one of our favorite places in Reno, Audrey Harris Park. The earlier excitement in the car returned as we made our way. It’s not really much of a park. It’s very small, with only a couple of benches and it sits at the edge of a ridge. It’s a special place to us though. I am in love with the amazing view of Reno and the skyline which infuses me with peace and awe. I take joy in the drive there and the drive back home. Thomas and Lillian enjoy the view too. More than that, it has become a special place for the three of us as a family. What a great day!

Being a single parent to Thomas and Lillian has indeed been an adventure. In fact, my entire life is a great improvising adventure. Being that I am a procrastinator, with an added pinch of spontaneity, you could say that I am quite the adventure for my kids. Even though I make much of our escapades up as I go along, it is perfect, and I look forward with a happy, smiling heart to every single adventure yet to come for me and my little family.

Tip for the Journey:

Find some time during your day NOT to have a plan. No planned activity, no schedule to follow. Wait until that specific moment and ask yourself what you would like to do for the next hour or two. If you are with your kids, ask them what they would like to do, what kind of an adventure they would like to go on. Kids can come up with some pretty amazing ideas for adventures. Most likely you will not really be able to have the exact adventure they suggest, but this is where improvisation comes into play. As parents, we improvise all the time, and don’t even realize it; when a toy breaks, or the scissors are missing, or they want something to use as a ramp to play cars. You name it! Practice transferring this great skill to other areas to create peace in your life.

When we aren’t happy or not truly living in the present moment, it’s hard to improvise. Practice keeping yourself in the present moment. As often as possible repeat thoughts and activities that help you to pay attention to the present moment, experience joy, and be inspired. When you live in the present moment you are better equipped to tap into your improvising skills, be spontaneous, and go with it.

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

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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. 

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 →

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.”

 

O is for Observe

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Camilla and Lillian

“Most people see what is, and never see what can be.” -Albert Einstein

Observing, paying attention, being aware of the present moment.  What’s happening, who you are with, are you having a conversation? Are you really being present for the conversation or are you thinking about all those bills that are due or what you’re making for dinner or what happened on the last episode of your favorite show.

Observing and paying attention are keys to our own happiness and success.  In addition, they are crucial in our function as special needs parents.  Have you noticed that many with intellectual disabilities are more intuitive than us typical folks.  They can sense insincerity, they know when someone is not being present, not listening to them, “faking” kindness. {Just had someone point out that they think we ALL sense insincerity.  I’m thinking I didn’t use the proper words to describe what was going on in my head! From my perspective, as Mom to Lillian, I have noticed that Lillian is super sensitive to adults in her charge who are insincere – even when I sometimes don’t initially sense it.  I’m also not saying that those with intellectual disabilities are “more” than those of us who have all of our genes.  I believe some who are missing genes have a heightened or increased awareness in some “areas”.}

How will we guide our kids with special needs into a fruitful, happy and successful future if we are not present for them?  Observe their likes, dislikes, what are they good at doing, favorite hobbies and maybe they have topics or interests they seem obsessed with . . . the weather, the time, making lists, making a plan and sticking to it.  Observe these and then use these qualities to their advantage in life.  They like these things for a reason.  It’s not up to us to figure out why they like or don’t like something or why they are obsessed with a topic.  Let’s observe, be present and give them every single opportunity we can to blossom and use the special and unique gifts they have.

I recently returned from the Chromosome 18 Conference and I was humbled by the young adults.  {The photo above is Lillian and I at Reno/Tahoe airport headed to the conference in Indy.} One of the last conversations I had with my Chromosome 18 family was in the hotel restaurant having lunch with 20 year old Kati. Kati’s mom, Deb, and I began talking about movies and I mentioned the Lion King. Kati said that was the first movie she had ever seen.  Then she proceeded to tell me the second movie, the third movie, the fourth movie and on and on up to the Last Harry Potter movie she had seen.  She remembers this about books she’s read also.  I don’t know about you; but I find that pretty darn amazing.  I was in awe of this young lady.  How many of you remember every single movie you have seen beginning with the very first one.  Kati loves to plan events and trips.  She is planning a trip to Vegas for her 21st birthday which is a little less than a year from now.  She loves horses and wants to travel to New Zealand and Florida.  This young lady is amazing and look at the unique and special qualities she has been gifted.

I was also intrigued by how many of the young adults have as a dream working with animals and/or children.  It seemed to be a very common thread.  I asked my friend, Catherine Burzio, if she thought it was that each was simply picking up or borrowing what the previous young adult had said.  She said “No, that’s not it at all”.  It’s the unconditional love that animals and young children give.  I fully understand that for one reason or another there are reasons that some of these young adults cannot work as a vet or even a vet assistant or in a child care facility.  But, do you think if we observed them more and were present more we and possibly a coach and our community could find or create just the right fit for them.  A fit that gives them the opportunity to do what they love and enjoy and are good at and earn money for themselves.

I don’t know and I’m not at all saying this is the right technique for everyone . . . I’m just thinkin “out loud”.  What do you think?

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