Celebration of an Ending

April 26 2017:

Done! After six years. Lillian began in 2011 with all three therapies: ST, PT, and OT. ST and OT have long been stopped. Today was the last physical therapy appointment. xoxo

Lillian Done with PT 4.26.17

Chocolate covered gluten free donuts yesterday in celebration of endings, one more layer of freedom, and feeling the storms of life to allow even more freedom. Cheers! 🎉 xoxo

Celebratory Donuts Done with PT for Lilllian 4.26.17

World Rare Disease Day in Support of Chromosome 18 Differences

February 28 2017:

In honor of World Rare Disease Day …. Throwback to a Different iz Good awareness video ……

Red!!! Today is World Rare Disease Day and red is for 18p- ….. Deletion of short arm of chromosome #18. Occurs once out of every 50,000 births. xoxoxo #redfor18p

Red for 18p- 2.28.17 #1 Red for 18p- 2.28.17 #2 Red for 18p- 2.28.17 #3 Red for 18p- 2.28.17 #4

Lillian Interview – February 2013

Image

**THROWBACK POST**

February 11 2013:

Little Washoe Lake 6.14.13 #2

One of our sweet Chromosome 18 friends is doing a research project on Chromosome 18 affected individuals and their family for school and asked us to participate.

Here’s Lillian’s contribution!

Go Courtney MacMasters Go! Courtney is sibling to one of our C18 affected friends!

(We did this without using her iPhone and Proloquo2Go so it could be seen how 18p- affects Lillian.)

 

Biggest Little Photographer and Sibshops

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

 

Can You Get Your Bathwater Ready

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

Why We Attend The Chromosome 18 Conference Every Summer

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

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

 

I Can Do Anything

November 6 2016:

I was drawn to watch this short 3 minute video just now. Although I have moved on from some of the roles and advocacy from this time in my life, this served as a reminder for me in this moment.

This is the video journey that accompanies the book I wrote and published in 2012, D iz for Different – One Woman’s Journey to Acceptance.

I CAN do anything I decide and choose I’m going to do ….. AND …. so can YOU! And it will be a success as long as we do it from love and with love. LOVE will free us all … xoxo