Tag Archives: 18p-

One Way I Listen to Life’s Messages

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**THROWBACK POST**

February 10 2016:

The way events line up is so interesting. Yesterday morning I had coffee with Jules Holland and we were talking about living an unfiltered life and experiencing the rawness of life. Later in the day, I wrote an article to be submitted to an online website. An article influenced by our conversation.

I wrote it in the format of a letter …. A letter addressed to a meltdown. Dear Meltdown … Later last night Lillian had a huge meltdown. In the midst of it, I remembered what I had just written and remained calm. Had I not had coffee with Jules, talked about what we talked about, wrote the article when I wrote it, I may have handled the meltdown completely differently …. and not so calmly!! Love, love, love … xoxo

C18 Trip July 2016 #35

 

Biggest Little Photographer and Sibshops

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January 26 2017:

“Biggest Little Photographer” and “D in for Different” left for Silver Springs Nevada yesterday afternoon. That’s a whole lotta love in that package!! May everyone who touches it on the way, feel the love!! xoxo

 Biggest Little Book and D iz for Different Mailed 1.26.17
January 27 2017:

WOW!!! What a great SibShop this afternoon! Thomas got to tour the lab, the roof (where the helicopter lands), the children’s ER, and the main ER at Renown. He also got to see a brain!

He says the energy there is very sad. Yet, the energy of his group was joyful and he had a good time.

Thank you Diana Beeghly Rovetti, Down Syndrome Network of Northern Nevada (DSNNN), and JUSTin HOPE Foundation for facilitating and hosting these amazing Sibshops!!

Thomas Sibshop 1.27.17

 

Why I Involve My Kids in Practicing Mindfulness

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**THROWBACK POST**

February 3 2016:

Dear Thomas,

I know how sometimes you long to have a “typical” sibling and “typical” sibling relationship …

https://themighty.com/2014/07/letter-to-the-siblings-of-a-brother-or-sister-with-a-disability/

After a huge Lillian meltdown this morning which caused him to be a wee bit late for school.

I am trying to help him notice when it’s not a good idea to push Lillian. He does try so hard, but just wants to not have to try sometimes. Lillian is making huge progress, yet, we still have those moments. Thomas’ teacher shares often with me how she enjoys his presence in the classroom as he’s so empathetic and compassionate.

I have recently pulled back from intervening when they decide to be unkind with one another. I’ve explained that I have taught them methods to use and I model those methods. It is up to them whether they use them or not.

This morning it escalated, I remained calm and not involved. It escalated and escalated and escalated. There was screaming and door slamming. I remained calm and not involved. I got scratched and pinched, I remained calm. I kept emphasizing that I’d be happy to help her get calm and to let me know when she was ready.

And. Finally, Lillian asked for help in calming down. I walked her through a meditative breathing exercise and we moved on …. I don’t always remain calm. I did this morning and it makes such a huge, huge, huge difference when I do. Mindfulness is an amazing way to live …

Yes, this. I am blessed and grateful that we are a team. I am having the time of my life on this journey with them. The joy, suffering, happiness, peace, love, and all … xoxo

Camilla and Thomas 2.3.16 - Picture from a Dried Up Washoe Lake in Fall 2015

Can You Get Your Bathwater Ready

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January 19 2017:

It’s one of those “Lillian miracle” posts again ….

Lillian and Camilla October 2016 Date Day 10.18.16 #8

Last night Lillian ran her own bathwater, turning the faucet on and off by herself (BIG deal!), readied the bathroom, pulling the heater out and plugging it in, and had a bath without calling me in to help with anything (BIG deal!!).

She did send a text in the beginning saying she couldn’t get the water to turn on …. yet, she figured it out before I even responded! At FIFTEEN years old! Hallelujah!! I was only needed for ONE task … getting her hair up. One day I will post that she is able to take care of that hair of hers!

When you take your shower or bath today, perhaps you may want to release all other thoughts and focus on the miracle happening in that moment. xoxo

I Need to Take It Easy

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**THROWBACK POST**

January 11 2012:

“Listen, I need to take it easy this week.” -Lillian

{Discussing that she and I need to get to working on her math!} So hard not to crack up! I’m trying to have a serious conversation here girl!

Camilla & Lillian Rancho July Date Day 2015

(Picture from a July 2015 Lillian and Camilla Date Day)

Why We Attend The Chromosome 18 Conference Every Summer

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January 8 2017:

Top 10 Countdown Continues! The Number SIX 2016 CamillaDowns.com blog post with the most views: “2016 Chromosome 18 Conference – San Antonio” ……. xoxoxoxoxo …….

2016 Chromosome 18 Conference – San Antonio

from the article … “The anticipation of and the attendance at the conference encourage Lillian to set goals and accomplishing them. At last year’s conference she got in the elevator, went downstairs, and waited in the lobby for friends .. all without my assistance or presence.

She used the hand dryer and automatic toilet also. About a week ago she walked across the foot bridge alone, without holding onto my arm. Two days ago she climbed two stairs with holding onto my arm and plans to reach the top of the stairwell before we leave for the conference. All of these are huge accomplishments for her … “

An Open Letter to My Daughter’s Meltdowns

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January 3 2017:

bench-at-vintage-lake-february-2016

Top 10 Countdown! The 2016 blog post on CamillaDowns.com with the most views: Dear Meltdown – The article which was quickly accepted and published by elephant journal.

May this land in front of the one who would benefit from reading it …

Dear Meltdown: Meet My Friend Mindfulness