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!!

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.)

 

Why I Involve My Kids in Practicing Mindfulness

**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