Give Me All the Vacations – Camilla in Lake Tahoe

August 12 2023

Lillian and I did it! We successfully navigated one night, at home alone for Lillian! I’m thrilled for us! Thank you to Matt and Julie Miller for the inspiration and the ideas. This moves us one step closer to me getting a longer vacation. Next up, we will try 2 or 3 days, then a week, and the sky’s the limit after that. (First time since about 2008!!)

Here are all of the South Lake Tahoe photos in one post. I stayed for one night, on the beach, with an amazing view. In my opinion it was THE BEST lake view room on the property. Don’t know how that happened. But, hell yes! I mostly just relaxed and enjoyed the view. I met up with my South Lake Tahoe friends for live music on the beach at the property next door to where I was staying. It was an absolutely beautiful night. The next morning I went to the beach early before everyone started arriving. It was perfect! And there was a bear sighting. But it was just out of my view.

For those that don’t know Nevada and Lake Tahoe. This was about an hour drive for me. We can get to North Lake Tahoe in about 30 or 40 minutes. South Lake Tahoe is about double that.

Fear and Worry Nearly Stopped Me

August 5 2023

I have reserved a lake view room for myself in South Lake Tahoe for one night next week. Fear and worry nearly kept me from doing it. In fact, I lost the room I was going to reserve because I kept putting it off.

I will spend a morning at Nevada Beach, go to a live music at the beach event, and enjoy my day and night to myself. I’ll be reaching out to a few helpers to text with Lillian, making sure she’s okay. Thanks again to Matt and Julie Miller for sharing your method for making vacations without our self-advocates work for them and us. I’m a bit worried, but I will work on that between now and when I leave. 🖤💋🖤 (Photo of Lake Tahoe, taken by me in 2018 or 2019)

Love and Hearts: Refuel and Nourish Your Body

Love Flakes Heart 5.23.18

Just as I refuel and nourish your physical body,
You must take action to refuel and nourish your emotional and creative body.

You cannot serve others if you are deeply depleted.

Creativity and improvising become clouded and stagnant when you are depleted.

You tell yourself you must continue, yet unless you give yourself time away from those who unknowingly drain you; your circumstances will not improve.

There are those in your life you simply cannot distance yourself and break free from due to your role as caregiver.

Yet, you can begin to schedule time to replenish and refuel so that you can be loving and compassionate in this role.

Take heed. This must be done for your mental and emotional health. And, it must be done for those you love.

Love,
The Cereal
xoxo

(Written May 2018)

Well, lately I haven’t. Hence, this mornings message. I actually received it last night but this brought clarity. I had hit the point of no return last night. It hurt to even walk. I have been completely overwhelmed, sad, and absolutely not creative. And, this message is why. I am beyond empty. Deeply empty!! There aren’t even fumes to keep me going. I’ve been on empty for probably 2 years. I feel so much better having realized what’s going on and I took time to write this morning. I’ll be writing a blog post to expand on this so stay tuned.

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Amazing news! My 16 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” is published. Learn more and order here

Wonderfully exciting news! My 12 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

And my book published in 2012, D iz for Different – One Woman’s Journey to Acceptance; which reached #2 in the Self-Help Category and #1 in Special Needs Parenting on Amazon.

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Time To Just Be

For the first time in about six years I scheduled a “date” with myself … no plans, no appointments, no errands, no networking events … nothing. When I was married, I scheduled a date day with myself once a month, just as I did with Lillian and my spouse. Thomas was not yet 1 year old so I had not begun date days with him yet. I haven’t done that since 2006 (scheduled a date with myself, that is … I have a date with Thomas and Lillian alone once a month).

You see, I’ve just recently realized what *respite means, the true meaning and it’s true purpose. Since 2006, I have used my time away from Lillian and Thomas to go to personal appointments, run errands, attend networking events and work. I really did not think of myself as a *caregiver and one who needed respite. I didn’t really know the definition of a caregiver or respite. (See below for a definition of “caregiver” and “respite”.)

In the last couple of months I decided I absolutely must have some time to myself … time to just BE. I finally scheduled someone to come stay with Lillian and Thomas on July 12, 2012 for 4 hours, not knowing how I would pay for it. But, I knew this had to be done for my own sake and for the sake of Thomas and Lillian. (***Update*** After I wrote this article, I found out, without my asking or saying anything, that grant money was going to be used to pay for my respite for this month. Hmmm … Coincidence??)

I have read, heard and believe that we each must have time to ourselves, caregivers or not. Time for doing what we like to do, want to do or time to do absolutely nothing at all … with no commitments. Taking respite allows us to refuel and refill our cups so that we can come back to our families and our obligations and serve to them from what overflows. Having this time infuses us with creativity, patience and resourcefulness. I understood the concept and thought I was doing good, giving myself 15 and 30 minutes of it before Thomas and Lillian wake up in the morning and after they go to bed.

Today, when I finally left the house, thirty minutes after the scheduled time, I still didn’t know what I was going to do. I knew I wanted to write … I have been craving to write …. articles, quotes, poems … whatever, my soul has just been screaming … “Write, Write, Write!!” But, when I left my stomach was screaming, “Feed me first before you write!”

I found myself at the Summit Sierra outdoor mall as I didn’t want to waste any of my 4 hours (now 3 and a half) driving somewhere. I then got extremely confused … where do I eat, I don’t know what to do. I posted on facebook asking local friends which of two restaurants I should eat at. I sat in the car and pretended like I was reading for about 30 minutes, all the while getting more and more confused … wondering what in the heck I was doing. I finally decided I would just go to a fast food restaurant. I pulled up to a handwritten sign that the debit card machine was not working and I didn’t have any cash on me. I couldn’t back up as someone was behind me and couldn’t go forward as people were waiting for their food. I was forced to wait, all the while wondering what the heck I was doing!! For me, this was a reflection of what was happening in my mind. When I was finally “free” from the drive through lane, I parked the car. What do I do? My intuition said to go back to the original restaurant I had chosen, so that’s what I did.

And you know what? I had one of the most blissful meals and experiences I have ever had! I was on the verge of tears, hoping the waiter didn’t come ask how I was doing while I had tears welled in my eyes. I was thinking, so this is what it’s like? I had forgotten

I’ve heard that this is a common experience with caregivers … We have forgotten what it’s like to have time to just BE. The second we leave our loved one we become confused and are not sure what to do with ourselves. I didn’t think it would be like that for me … I even wrote about giving yourself quiet time in my book, “D iz for Different”, in Chapter Q: Q is for Quiet … Now, I understand

…. And watch out because now my passion is welling to the point of overflowing to educate and help other Moms/Parents/Caregivers of special needs kids understand too …. to include a new project brewing over at the Turning Views Foundation and Different iz Good. Oh and you better believe that scheduling respite or a date day with myself or whatever you want to call it will become a permanent part of my life!

For those of you attending 19th Annual Chromosome 18 Conference, this is what I’ll be speaking about, Taking Time for You, in addition to three 15 minute Proloquo2Go sessions.

Stay tuned as I’ll be writing a post detailing a bit more statistics and facts about caregiving and respite.

*Who are Caregivers? 

Caregivers have often been called the backbone of America’s long-term care system. On a daily basis, family caregivers assist relatives and loved ones of all ages with routine daily tasks like bathing and homemaking to carrying out more complex health-related interventions like medication adminstration and wound care and managing complex needs of children and adults with disabilities.

In 2009, it was estimated that 29% of the population, or nearly 67.5 million people, provided some type of care to children and adults of any age, including the elderly, with special needs. These caregivers provided nearly 20 hours of care per week and often do so at the risk of great phsyical, emotional, and financial hardship. (Source: Caregiving in the U.S.: 2009. National Alliance for Caregiving/AARP, November 2009. https://www.caregiving.org)

*What is respite?

Respite is a key component of family support and home and community-based long-term services and supports. Respite services strengthen family systems while protecting the health and well being of both caregivers and care recipients. The Lifespan Respite Care Act of 2006 defines respite care as “planned or emergency care provided to a child or adult with special need in order to provide temporary relief to the family caregiver of that child or adult.” Respite services may be provided in a variety of settings, including the home, adult day care centers, or residential care facilities. (Source: Fact Sheet from The Lifespan Respite Care Program)