I Choose Happiness …. That is What I Choose

August 10 2017:

Incredibly grateful for this young man I get to have as my son. Not because our relationship is all roses and rainbows. It’s anything but that. Yet, definitely some roses and rainbows blooming too!

At dinner Lillian choked badly on a piece of pear. She’s choked on food many times, yet always gets it out pretty quick by coughing. She has poor oral motor skills and doesn’t chew food thoroughly.

She could not get it out last night and I panicked. Watching your daughter struggle for a breath and begin to turn purple is a dreadful and draining experience. Completely forgot what I know about assisting a person choking on food. After what seemed like forever, we finally got it out.

Then I had a huge meltdown being upset about that and getting caught up in my own melodrama. Thomas said exactly the things I didn’t want to hear and exactly what I would have said to either of them in that situation.

I cannot even express in words how blessed and grateful I am that we three are traveling this life’s journey together. Thank you Thomas for helping me to learn not to cling and to let “things” move on through me rather than hanging on for dear life …. I choose Happiness. That’s what I choose … xoxoxoxo

Round and Round With Ridiculousness – Health Insurance Companies

August 3 2017:

“Those people at the insurance company are a fool’s behind.” -Lillian Darnell (I have no idea what a fool’s behind is, but in this case I’m guessing it’s not a good thing.)

Lillian’s craniosacral therapist left a message today that we need to cancel Lillian’s Monday appointment as Anthem Blue Cross has decided they will not pay for more sessions.

She’s ONLY been going for about 2 years now and looks forward to each monthly session for the relief it provides. It’s for pain management and they have been paying all this time (with disabled medicaid as back up).

Her amazing therapist only called as a courtesy so that we don’t incur a bill and to give her office time to dispute with Anthem. So grateful for her and the staff at the Northern Nevada Medical office.

As a side note, I had a lengthy conversation with a chromosome 18 dad at the conference who works for Blue Cross Blue Shield. I did not know there is a difference between Anthem and the Blue Cross for which he works. Anthem is for profit and Blue Cross Blue Shield is non-profit.

He wanted to help me so badly with an issue I gave up on with Anthem. Due to a mistake they overcharged me by $50 about 2 years ago. I tried for about a year to get the money back and eventually gave up. I have no patience in talking with the people who answer the phone.

They also have a flaw in their online system as I cannot register Lillian for an online account to pay her bill or find out which dentists take her insurance. One must be 18 years of age. Well, she’s not, but she has her own policy in her own name (grandfathered in since she already had the policy). No one seems to care about this glitch.

I am so thankful that we hardly ever go to the doctor and my heart aches for my C18 friends who go round and round on a consistent basis with insurance companies. Life is too fleeting and we should not have to worry and fuss with this … Sending so much love to all who have to go round and round for ridiculousness … xoxoxoxo

**Update** August 26, 2017:

Lillian’s craniosacral therapist had a peer review with someone from Anthem. It happened so fast I didn’t have time to get supportive documentation to her. She went round and round with them and they would only give her one more appointment with us. They said that Lillian is not getting better so these visits aren’t doing her any good ….

Next step is checking with the Research Center to see if there have been any research studies done regarding chronic pain and 18p- … Round and Round …

Help Team TLC With Attending the 2017 Chromosome 18 Family Conference

C18 Trip July 2016 #17

We need your help! Last minute fund raising for Team TLC’s attendance at the 2017 Chromosome 18 Family Conference in Naperville, Illinois from July 12th – July 15th.

Fortunately, we have a sponsor who has loaned us money for our airfare, registration, and hotel stay. And we have a wee bit from Thomas and Lillian fundraising since last year’s conference.

We just need to make sure we have enough for incidentals while there … food, transportation to and from the airport, and the special events lined up for siblings and self advocates.

If you are moved to help, here’s a list of our creations and items for sale:

  1. Lillian’s debut book, Where Would You Fly and Other Magickal Stories, debuting by October 2017. Pre-order here … http://lilliandarnell.com/author/
  2. Thomas’ book, Biggest Little Photographer, published in October 2016. Order here …. http://BiggestLittlePhotographer.com
  3. Camilla’s book, D iz for Different – One Woman’s Journey to Acceptance, published in March 2012. Order here …. http://camilladowns.com/books/
  4. Skeleton key wind chime designed by Thomas and created by Camilla ($25 – includes shipping) … **SOLD** Picture here … https://www.facebook.com/photo.php?fbid=10155549637116584&set=a.52927246583.79053.681171583&type=3&theater
  5. Print or digital download of Lillian’s Egyptian Eye or Rainbow of Emotions abstract art …. View and order here … http://lilliandarnell.com/lillians-art/
  6. Hand made notebook by Lillian … Order here … http://lilliandarnell.com/lillians-art/
  7. Custom poem for you or a loved one (by Camilla) … email Camilla at Camilla Downs @ gmail . com ….
  8. Queen size solid wood sleigh bed frame … Make an offer … Picture here … https://www.facebook.com/photo.php?fbid=10155404014936584&set=pb.681171583.-2207520000.1499540619.&type=3&theater
  9. If you are a business owner and want to sponsor us, I’m happy to wear promotional items, get a temporary tattoo, write a blog post, etc. …. email Camilla at Camilla Downs @ gmail . com …
  10. Just want to donate …. Go here … https://www.paypal.me/camilladowns
  11. Prayers, blessings, and good juju!!

If you’re wondering why this is such a big deal for Team TLC and why it means so much for us to be there, go here and here.

With tremendous gratitude and blessings,
Thomas, Lillian, and Camilla
xoxoxo

C18 Trip July 2016 #77
(Team TLC with our friends from Australia!! xoxoxo)

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

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.)

 

One Way I Listen to Life’s Messages

**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

 

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

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