September 23 2014:
Check this out Chromosome 18 friends and numerology friends …. We live at the edge of 18th street, our assigned parking spot is #18 and Lillian has 18p- … Hmmmm …..
October 31 2020
Thank you Michelle Dvorak for hosting the The Chromosome 18 Registry & Research Society Halloween dance party!! What fun!! Everyone looked amazing and fun in their costumes!! 🎃👻🎃👻🎃👻🎃
October 31 2020
First time over to The Romano Duo’s since December. A whole pot of vegan chili just for me … with a virgin Bloody Mary!! 🧡🖤🎃👻
We had a fun time getting to visit The Romano Duo at their place. All three of us haven’t been since Last December.
We ate dinner outside and then I took Thomas and Lillian around the neighborhood for trick or treating. It was great to see how creative people were with safely handing out candy. Thomas was a secret service agent (who forgot to tuck in his shirt until after photos … Oops!). Lillian was once again The Rose Fairy Princess. 👻🎃💀
Thomas and Lillian also got a surprise visit from their dad who they’ve not seen since 2014. He phoned as we were driving to The Romano Duo’s place and said he’d be driving through town in about an hour. He visited for about 20 minutes before continuing on. 🤷🏼♀️
Home now. Time for Thomas and I to watch Arsenic & Old Lace. ☠️☠️☠️
October 23 2020
It is done. I normally wouldn’t take so many pictures. Yet, this was Lillian’s first time. She can’t/won’t wear a mask so she didn’t get to walk it in to the official ballot box at Raleys – took me about 2 minutes. 💙🌊💙
When Lillian reluctantly agreed to register to vote last year while we were getting her ID, she had no intention of voting. I suggested she might change her mind, and this way she’d be ready, just in case. I asked her last night why she changed her mind, deciding to vote. She said, “The United States needs me to vote.” She researched the candidates and the questions for hours. Congratulations, Lillian Darnell!!! 🏳️🌈🏳️🌈🏳️🌈
November 3 2015:
The article I contributed to Interaction, which is a multidisciplinary journal for the Australian Institute On Intellectual Disability, has just been published. Here’s a brief description of what and why I was asked to contribute: “looking at creativity in how we work and interact with people with intellectual disability. The other theme I am interested in exploring is empathy and how this “works” within our relationship building within intellectual disability”
Excerpt from the article: “One blood test, one phone call, one moment in time, drastically changed the direction of my life forever. I know more about genetics, chromosomes, DNA, motor skills, verbal skills, and now emotional and behavioural issues than I ever thought I would need or want to know. ……. I thought I had life pretty much planned at that point and for a while this brief phone call seemed to have caused my life to break apart like a melting iceberg with pieces scattering here and there. Looking back now, all that was brought into my life, all that occurred, all that began, and all that ended were meant to happen for my own growth and enlightenment. An enlightenment I feel spreads far beyond myself and my family as I believe we are all connected.”
My article is on page 30. However, the entire journal is excellent! You’ll need a chunk of time to read it as it’s short story length at around 4,000 words. I encourage anyone who is moved to subscribe to this wonderful publication! Enjoy and please feel free to share and/or forward to anyone you think would benefit! With oceans of love … xoxo
My article is on page 30. However, the entire journal is excellent! You’ll need a chunk of time to read it as it’s short story length at around 4,000 words.
I encourage anyone who is moved to subscribe to this wonderful publication to do so! Enjoy and please feel free to share and/or forward to anyone you think would benefit! With oceans of love … xoxo
PDF version: Interaction Volume 28 Issue 4
October 10 2020
Yesterday was the Lillian and Camilla October 2020 Date Day
First stop: I picked up an order of fries for Lillian and we had a great lunch at home.
Next stop: A trip to Wilbur May Arboretum. So much gorgeousness = tons of photos!
Last stop: Lillian picked out her pumpkin and chose a sugar cookie with red icing, in the shape of an apple.
October 8 2020
Finally arrived in yesterday’s mail. This will be Lillian’s first time voting since turning 18! When she and I were getting her ID, she wasn’t much interested in adding on the form to register to vote. I suggested she do it then, so when she was ready to vote, everything would be all set, explaining you couldn’t wait until the last minute. Photos to follow when we deposit them in an official ballot box.
September 19 2020
I’m finished. I’m done! After eight years, Lillian will be fully taking over an aspect of her self care. We have been working the past seven months on her taking it over fully. I did it for the last time about 30 minutes ago! Hallelujah!! Congratulations to Lillian!! Photo from our July 2020 Date day.
Today, Monday, 9.14.20, at 4:00pm PST Lillian Darnell and I will be live for about 30 minutes so her friends and YOU can help her celebrate her 19th birthday!
We had plans to go to the arboretum this morning, then a poolside BBQ with The Romano Duo this afternoon. But …. Air Quality from the fires in California is in the unhealthy range. 😢😢😢 … We will still do all planned but will have to be another day …
Please join us. She’s had a rough time, not being able to have our typical dates since mid-March. She’s not been inside anywhere since then. We hope to see as many of you as possible! Much love to you! xoxo (We will have Zoom as back up should facebook live not play nice. Last year we kept losing our connection!)
The “LIVE” celebration on facebook …
The goodies. The cake looks like hell, but tasted like heaven. It’s vegan. It’s gluten free. It’s delicious. Looks had to fall by the way side. 🤪
Why so many photos blowing out the candles? Up until the 10th birthday or so, Lillian could not “blow” to blow out candles. Still takes a few times. But she can blow wind now!!
September 20 2020
Look at this super cool gift that Lillian received from her friend. Thank you, Macy Miller! I hope she lets me help put it together.
December 6 2013:
Sweet Lillian had a major melt down the other morning. Oh my word! I realize how much Thomas is looking to me to see how I respond and how to respond when she’s lost it. There is no speaking to her. One must wait until she has calmed. As she was in her room trying to get calm, I explained to Thomas that she is going through puberty on top of having a decreased ability to control and handle her response when things don’t go as she wants them to … due to her chromosome abnormality. At times it is difficult for me to control my response!
What seems to be working during this phase is to flood my thoughts and heart with love and compassion and respond softly. This does not mean I do not respond when Lillian blames me and Thomas for how she chooses to react. I gently let her know that absolutely no one controls what she says and does but her. I give her suggestions like taking deep breaths, counting, going to her room, reading a book, changing what she’s thinking about, drinking some water.
Thomas has a great deal of anxiety when Lillian is unhappy or having a melt down. I attempt to show him by my reaction that we want to not let our emotions/attitude be controlled by other people and their emotions. I explain that I know it’s difficult at times and that if we are at least aware of this, then we can be more helpful by focusing on a solution when needed. Otherwise, Lillian has had great days all this week! Love and hugs y’all! xoxo
For years I have been making a shift to more mindful living. By no means do I have this perfected and there are times when I’m less than happy with my chosen response! However, when I do offer an “icky” response, I don’t beat myself up about it. I take note of it, release it and move on …
I sometimes over react too. I forgive myself, apologize to others and release it. We know that anything we say in anger is not coming from our true selves. Our true self only knows love and compassion. Oceans of love and hugs to all y’all!! xoxo
Honestly, there are times I would like to stick my head in the sand and pretend I don’t have kids …. And then, in the thick of the dramatic moment and in times of calm, I look deep into Lillian’s or Thomas’s eyes and we truly “see” one another. We each know that there’s no need to play games or “do” drama …. that’s not who we truly are …
It’s been 2 years since I posted this. It served as a good reminder when it popped up in memories. I’m still working on the blog post about the current journey with Ms. Lillian. I’d love to say that this got better. Yet, in fact it got worse (the melt downs became volatile last December 2014). We are making really good progress with psychotherapy (focused on mindfulness, recognizing emotions, and CBT).
Thomas does indeed still have anxiety when she has a meltdown turned explosion. Yet, he has learned the art of distraction. He tries his best using this method. Plus, he’s even used it on me! It’s been a journey of growth and learning. It’s been perfect and is happening exactly as it should be! Lillian has been the teacher that brought mindfulness into our life and that is a true blessing! Hugs to all y’all! xoxo
**September 2020 Update**
I’m happy to write that things have gotten better! Lillian began using botanical oils in 2017, and once I got the dosage and timing figured out, it has helped tremendously. She still does have the occasional volatile melt down, but not nearly as often. I’m sure that maturity has helped a bit, too. Yet, still waiting for that to kick in a bit more.