She Loved by Camilla Downs

May 18 2017:

It’s the 18th of the month. Chromosome #18 brought into our life family we never knew we had and has blessed us beyond the words to even describe. To a beautiful soul ….

Dragon and Angel Wings and Bird Wings Vintage Lake May 2017

Ever There

She loved.
She shined.
She let go.

Ever there with kind words,
with encouraging words,
with loving suggestions,
and, oh yes, hugs and happy dancing.

A smile that beamed brightly.
Greeting with open arms all who
were new to this different path.

The originator
of the “Different is Good” slogan.
She checked in on one
just when one thought she
was all alone.

She lived life
to the fullest,
coming to embrace this
different path.

Deeply she loved
her family.
Openly and freely
sharing her own
ups and downs.

Dear friends
and family the world over, has she,
who are deeply saddened for her
early departure.

She wanted to help all.
She wanted to cheer us all on.
She wanted to hug us all.

Every eighteenth of every month
my face to the sky I will turn,
to see and feel a warmth from above,
surrounding me with the
help, cheer, and hugs she
longed to provide.

Fly free beautiful soul,
Fly free and help, cheer,
support, hug, happy dance,
and LOVE for an eternity.

I love you, Susan Moran.

Camilla & Susan Savanahh Conference

Hand Made Custom Notebooks by Lillian Darnell

May 20 2017:

From Lillian …. (The conference is in Naperville, Illinois this year) …. xoxo

Hey, everyone! Every year around this time, I like to create something to fundraise and help my family attend the annual Chromosome 18 Family conference.

This year I am creating handmade notebooks which can be customized.

Here’s a sample. Let me know if you want one by commenting here or sending an email to my Mom at CamillaDowns @ gmail . com .

Lillian's Doodling Notebook May 2017

She’s already received THREE orders! YAY Lillian!

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

How Camilla Feels About It

**THROWBACK POST**

February 28 2013:

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 my contribution … being interviewed regarding how it feels to be a parent to Lillian (who has 18p-)! Go Courtney MacMasters Go! Courtney is sibling to one of our C18 affected friends!

Sibshop for Thomas and Royal Package and Marmite and Calligraphy and The Universe and Finished

March 5 2017:

Thank you Down Syndrome Network of Northern Nevada (DSNNN) andJUSTin HOPE Foundation for another great Sibshop for Thomas!! Looking forward to the May event! Yay!

Thomas Sibshop 3.5.17

March 7 2017:

We received a Royal Mail package yesterday. Thank you Melissa Susan Sheard for the care package. Now we can say we’ve tasted Marmite! WOW!!! It’s salty, for sure!

Royal Mail Package Marmite 3.7.17 #1 Royal Mail Package Marmite 3.7.17 #2

March 8 2017:

Physical therapy day for Lillian. As I was getting back in the car I was moved by the books she’s reading. How did she know I want to learn calligraphy? The other is mine, but she got to it first!

April will be our last month for physical therapy. So much excited about this! We may return to physical therapy after summer, yet not here as I don’t feel she needs weekly appointments. We’ve been coming here for about 6 years.

Plus, I will try to talk Lillian into something different to pinpoint the areas that still need developing … yoga or some kind of dance? We shall see. Hallelujah for endings, new beginnings and new adventures! xoxo

Lillian Books 3.8.17

March 9 2017:

This afternoon was our bi-weekly library visit! This time with a twist. Thomas got to take part in the South Valleys Coding Club at 4:00. It was very basic using Scratch; which he already knows. Yet, they will progress from there. We LOVE the library!!

I’m the Queen of the Mountain

**THROWBACK POST**

February 22 2014:

“I’m the queen of the mountain!” – Lillian Darnell

Celebration time! This young lady remembered all on her own today that she needed to get a book for school from the library. I did not remind her at. All! We did not even discuss it today or yesterday.

Also in the past week, she has been doing basic addition and subtraction in her mind!! This girl! This girl who stood on this little hill today and without any prompting from me said, “I’m the queen of the mountain!”

Celebrate those milestones whenever they come …. however long it takes! ♡

Lillian on Hill 2.22.14

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

How It Feels to Be A Sibling to Lillian

**THROWBACK POST**

February 19 2013:

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 Thomas‘ contribution … being interviewed regarding how it feels to be a sibling to Lillian! Go Courtney MacMasters Go! Courtney is sibling to one of our C18 affected friends!

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.)