In Remembrance and Celebration of Nikki Jones Luinstra: A Never Forgotten Promise

A Never Forgotten Promise Between Two Souls

(Nikki and I and her cat in the top picture and Nikki and I and our friend Ginger in the lower picture. This was my going away dinner before I moved.)

For my beautiful friend Nikki Luinstra (Robin Nicole Jones)  who is forever in her happy place now …. She LOVED the beach! We watched the movie Beaches together at about 19 years old and made a promise to one another that I was not able to fulfill in person, yet have done my best to fulfill in my imagination since she phoned me last month. 

Nikki left a voice mail on June 25, 2013 saying, “Camilla, my sister. I haven’t talked to you in forever. I really need to talk to you now. Call me. I love you.” I phoned her right back and it was the most out of body conversation I have ever had. My heart is so heavy that I was not able to go to her when she called me last month. She said, “Remember when we watched the movie Beaches? Remember what we said to each other? Will you be coming down here anytime soon?” She was calling to tell me good bye … She also told me she was worried about her family, her husband, Mark and her 3 daughters. I want her daughters, Shelby, Kelly and Marcy to KNOW that they will always have a friend and mentor in me. Should they ever need someone to listen or to offer advice who also knew their Mom …. I am forever here for them.

Although we did go on our own separate journeys that took us thousands of miles from each other, this was never forgotten. My wish is that my imagination was strong enough that it reached her and she felt as though we were sitting on the beach soaking it in during this last month. I know too that the next time I visit a beach, Nikki will be there to just say “Hey”.

We met when we were in high school at about 16 years old. We worked at the same grocery store, Jitney Jungle. We quickly became the best of friends. We spent so much time together and eventually coined ourselves as sisters since neither of us had a sister. I even called Nikki’s Mom, Peggy, my other mother. Nikki and I lived together for a time before I moved from Mississippi in 1990. She was indeed a great friend.

Nikki was a dedicated friend, Mom, Wife, Daughter, Sister, Aunt, Nurse … whatever role she had chosen to fulfill. Now she is an Angel and knowing her, she has dedicated herself to this like everything else in her life. Nikki’s ashes were taken to the beach she loved so dearly and scattered. Her body and soul are now free of the cancer that took her life. I wanted Nikki to have a forever in the digital world too so I wrote this article dedicated to her. Love you Nikki … Enjoy that eternal beach! xoxoxoxo

My wish is that this article inspires just the right person at just the right moment when he/she stumbles across it in this vast digital world. Further, my wish is that you know that a deep and true friendship spans distance and continues it’s strength with time, even when friends go months or even years without talking with one another. The bond created never weakens ….

Amazing: Reiki Testimonial

“This was my first time experiencing Reiki. It was amazing! I felt so relaxed. It’s hard to describe, but I couldn’t tell where my body ended and the air began. I had been curious about Reiki but was waiting for the right person to give me my first Reiki experience. Camilla was that person. Looking forward to my next session.” J.R. – Reno, Nevada – 8.15.13

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

Gallery

This gallery contains 12 photos.

(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


(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

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 …

 

Latest News: Reiki Level II Certification

On Friday, July 19, 2013 I attended an all day training to become certified as a Reiki Level II Practitioner. I was certified as a Reiki Level I Practitioner on June 15, 2013.

Both classes I attended are taught by Denise Sheehan of Sage Spirit Coaching & Reiki. Denise is such a beautiful spirit and shining light. I’m blessed and grateful that our paths crossed.

Reiki was founded by Dr. Mikao Usui in the 1870′s. It is believed that Sanskrit Sutras & Tibetan Monks practiced it 2500 plus years ago.

What is Reiki? (Pronounced “ray-key”) … Reiki is a Japanese technique for stress reduction and relaxation that also contributes to healing. It’s done through touch. A warm and soothing energy flows from the hands into the client, promoting relaxation and releasing tension. Reiki, a form of energetic clearing and balancing, works on physical, mental, emotional and spiritual levels, restoring balance to body, mind, and spirit. You can learn more by visiting The International Center for Reiki Training.

I am actively taking a few clients now on a limited basis. Contact me here or via email to camilla (at) camilladowns (dot) com. 

I am in my 21 day Reiki cleanse right now; which means that I practice Reiki on myself every day during this time and be aware of the foods I eat, amount of exercise I get and be sure to spend time in nature. During this time I am sharing it with Thomas and Lillian also. Thomas had some interesting comments about his Reiki experience.

My Reiki Lineage:

2500+ years ago – Sanskrit Sutras & Tibetan Monks
1870s – Dr. Mikao Usui
1900s – Dr. Chijiro Hayashi
1939 – Mrs. Hawayo Takata
1973-1980 – Phyllis Lee Fumoto (Reiki Alliance)
Dr. Barbara Weber Ray (Aira)
*Iris Ishikuro
John Gray & Beth Gray
17 others
1982 – Arthur Robertson (Arma)
1989 – Dan Buffo
Alima Pat Hamilton (NWSH)
1999 – Brossman
Stephen Bruno
2002 – Laura (Derbenwick) Bruno
2006 – Denise Sheehan

Camilla and Denise at the conclusion of Reiki Level II Training on July 19, 2013. Great day!

Opportunism: D iz for Different Amazon Review

(Wade and I having coffee after he read the book. He sent a text telling me he’d read the book and wanted to meet for coffee to discuss it. I LOVED that y’all!) 

★★★★★ Opportunism is generally regarded as a derogatory term that refers to people who will do anything for themselves. They have no core values beyond promoting their own needs. They contribute nothing to society.

In fact, opportunism is a great art that has been studied and practiced by many. Opportunism is a belief system that is eminently positive and powerful. It is a philosophy that says every event occurs for a reason and that it is within your capacity to see this reason as positive. When you complain and rail against circumstances, you fall out of balance with the the natural state of things; you wish things were D-i-f-f-e-r-e-n-t. What Camilla has done is to embrace Different to the point that she sees it as an Opportunity to the point where it can be likened to a fire that consumes everything in its path – ALL cirumstances become consumed in her mental heat and converted into O-p-p-o-r-t-u-n-i-t-i-e-s. Any man or woman who believes this cannot be hurt by anything or anyone. The age of the individual is NOT over – but needed now more than ever. Good Job Camilla and thanks for leaving a trail at a time when so many have come to rely on Hope as a Strategy for moving forward. Thanks for being You! – Wade Hodges – May 28, 2013

If you would like to write an Amazon review of D iz for Different go here (amazon affiliate link). It’s not necessary to have purchased the book through Amazon. If you have an Amazon account, you can write a review.

Latest News: Interview on Special Needs Kids Talk Radio

On June 26 2013 I got to have fun being interviewed by Julie Fowler and Jenn Brockman of Special Needs Kids Talk Radio. We had a great time talking about “D iz for Different”the story behind how the book came to be, Lillian and 18p-, affects of being speech impaired for Lillian, what I’m up to these days including The Customized Employment Project, where this blog is headed, Thomas and how I handle it all.

Feel free to post in the comments section with any follow up questions. Enjoy!

Listen to internet radio with myselfempowermentcoach on BlogTalkRadio

Sincere and Inspirational: D iz for Different Amazon Review

(My daughter Lillian helping ship books … 2012.)

★★★★★ D iz for Different is a sincere and forthright book about a woman faced with a life path she never expected. Camilla Downs chronicles her experience as the mother of a special needs child with courage and candor. She writes about finding acceptance and learning to truly embrace her life, not in spite of its twists and turns, but because of them. This is an uplifting and helpful book for anyone whose life has not played out according to plan (i.e., everyone)! – Jenna S. – June 17 2012

If you would like to write an Amazon review of D iz for Different go here (amazon affiliate link). It’s not necessary to have purchased the book through Amazon. If you have an Amazon account, you can write a review.

Latest News: Reiki Level I Certification

On Saturday, June 15, 2013, I attended an amazing all day training to become certified as a Reiki Level I Practitioner. It was such a beautiful and peaceful day. Words simply aren’t sufficient to describe the experience.

The class is taught by Denise Sheehan of Sage Spirit Coaching & Reiki. Denise is such a beautiful spirit and shining light. I’m blessed and grateful that our paths crossed. I’m excited and ready to move on to Level II now!

Reiki was founded by Dr. Mikao Usui in the 1870’s. It is believed that Sanskrit Sutras & Tibetan Monks practiced it 2500 plus years ago.

What is Reiki? (Pronounced “ray-key”) … Reiki is a Japanese technique for stress reduction and relaxation that also contributes to healing. It’s done through touch. A warm and soothing energy flows from the hands into the client, promoting relaxation and releasing tension. Reiki, a form of energetic clearing and balancing, works on physical, mental, emotional and spiritual levels, restoring balance to body, mind, and spirit. You can learn more by visiting The International Center for Reiki Training.

I am in my 21 day Reiki cleanse right now; which means that I practice Reiki on myself every day during this time and be aware of the foods I eat, amount of exercise I get and be sure to spend time in nature. During this time I am sharing it with Thomas and Lillian also. Thomas has fallen asleep twice while sharing it with him before bed. On the third day Thomas asked me to do “Haiku” on him again. He wasn’t even clear on how to pronounce it! HA! He said it felt like there were electrical charges coming out of my fingers into his body. I didn’t explain to him what Reiki meant or anything about it. I just loved getting that message from him!

My Reiki Lineage:

2500+ years ago – Sanskrit Sutras & Tibetan Monks
1870s – Dr. Mikao Usui
1900s – Dr. Chijiro Hayashi
1939 – Mrs. Hawayo Takata
1973-1980 – Phyllis Lee Fumoto (Reiki Alliance)
Dr. Barbara Weber Ray (Aira)
*Iris Ishikuro
John Gray & Beth Gray
17 others
1982 – Arthur Robertson (Arma)
1989 – Dan Buffo
Alima Pat Hamilton (NWSH)
1999 – Brossman
Stephen Bruno
2002 – Laura (Derbenwick) Bruno
2006 – Denise Sheehan

Pictures from the beautiful and peaceful Reiki Retreat Center, Oda Be Acres, where the training was held.