The Unexpected Leads to Meltdown

Posted on December 7, 2017 by Camilla

November 10 2017:

The Unexpected: I had a service request for a slow draining tub with a note to call me first before entering. In the past they have always called first. This time. They didn’t.

I was out for walk and when I got back I ran into the maintenance guy headed away from our place. Lillian did not let him inside so I invited him to come inside with me.

After he left, a huge meltdown ensued that took Lillian two hours to recover from. She was not expecting this and it threw her schedule and morning out of whack.

I am so incredibly thankful for the path I have been led. The path of meditation, mindfulness, immersing in nature, emotional connection, Reiki, and now, EFT – tapping. Lillian will be one of my next tapping clients! HA!

It is imperative that I meet her volatile outburst with the opposite. I’m not able to do that every time, yet, most times I am able to hold a space of peace and calm. xoxo

I think there are quite a few 18p- beauties that have difficulties with this. Yes, it takes so much practice and they are here to be a mirror for us when we aren’t walking our talk, for sure. I try to always let them know I am not handling a situation as I would like to handle it so they know that even I don’t agree with how I’m handling it, but my humanness has taken over! HA!

Wee Respite and Independence for Lillian

Posted on December 3, 2017 by Camilla

November 8 2017:

For the past month or so Lillian has been going to the lodge once a week and spending solo time. I walk over with her, and she walks back alone. She stays anywhere from 1-3 hours.

I’m so grateful for this wee respite! And grateful she’s got somewhere close to go and practice being independent.

It’s semi-private … only people who live in the complex would be there. Has a coffee/hot chocolate/tea room, fireplace, pool table, big screen televisions, very small 12 person theater, and some comfy chairs and tables. The complex office is inside also.

Lillian stays in one spot and so far has just been using her electronics. It’s a start. Hopefully, she’ll get comfortable enough to take a book over or some artwork.

I think the next step would be dropping her off at the library for a bit. I want her to get used to communicating with people she does not know and who are going to have a difficult time understanding her spoken word. She has got to figure out how she wants to communicate with people when I’m not there (and not just be okay with them misunderstanding and her giving up.)

Round and Round With Ridiculousness – Health Insurance Companies

Posted on September 4, 2017 by Camilla

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 …

How Camilla Feels About It

Posted on April 28, 2017 by Camilla

**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!

Do You Have Acceptance

Posted on February 28, 2017 by Camilla

**THROWBACK POST** – In honor of Rare Disease Day … February 28th

February 28 2012:

“We will be US. You be YOU. Let’s all accept each other’s differences and be KIND.”

One Way I Listen to Life’s Messages

Posted on February 18, 2017 by Camilla

**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

Can You Get Your Bathwater Ready

Posted on January 31, 2017 by Camilla

January 19 2017:

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

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

Egyptian Eye and Rainbow of Emotions – Abstract Art by Lillian

Posted on December 18, 2016 by Camilla

November 27 2016:

Unique abstract art by Lillian …. Collage of her at the kids business fair last month. The “Egyptian Eye” and “Rainbow of Emotions” are her two amazing pieces.

A print of Rainbow of Emotions is on its way to Victoria Australia soon and a print of Egyptian Eye is on its way to Sparks, Nevada! Go Lillian! Please visit here if you’d like a print of your own!

Lillian’s Accomplishments and Goosebumps

Posted on August 3, 2016 by Camilla

July 20 2016:

We shared with Lillian’s physical therapist on Wednesday, the 20th, the pictures of her using the stairs and also about one other achievement she met while on this trip. Jillian, her therapist, got goose bumps! This is good stuff!

YES!! There’s another one that was accomplished. It’s a personal and private achievement … Just know, she did it! Took 14 and a half years, yet she did it!!! Wahooooo!! We are happy to share with any other C18 parents (or other special needs parents) … Just comment here or message me. YAY, WAHOO, and Let’s celebrate!! xoxo

I double checked with Lillian’s PT for the accurate names of what she’s been working on with Lillian for the past year … Straight from her: We have been working on integrating Fear Paralysis Reflex, Moro Reflex, Galant Reflex and Tonic Labyrinthine Reflex and Body Mapping. … xoxo

The 2016 Chromosome 18 Conference: Riverfront Walk With Lillian

Posted on July 23, 2016 by Camilla

(This is part five of The 2016 C18 Conference Journey. Go here for part one.)

July 13 2016:

Wonderful, warm, and beautiful walk with Lillian yesterday. Blessed that she, too, loves our time in nature. Looking, listening, and discovering. xoxo