Thank you to everyone who has donated and shared! We have surpassed the goal set we were able to comfortably enjoy the conference!! Now that we have returned to Reno, we're packing to move into a new and more affordable place. I've increased the goal amount for those who wish to continue supporting us. Any further donations will used to pay for the deposit in our new place, movers, and moving truck. I have been waiting for construction to finish on this new place for around 2 years now. It keeps getting bumped due to delays, but, I think it's finally nearing completion and we are set to move in September 9th. It is a unique/hybrid high end apartment community with 20 percent of the units set aside for working income families (us!). Meaning the rent will be much more affordable (about half of what it is now). Plus!! We get to move from a one bedroom, one bath into a two bedroom, two bath (which we've been in for 4 years now). This will be such a relief for all of us!
Help Lillian Spread Her Wings
Once a year she gets the opportunity to be amongst friends and those who get her, those who judge not. Once a year, she gets the opportunity to attend a life changing event. And, every year it does, sometimes a small change, sometimes a huge change. She chooses the time approaching this once a year event, and at the event itself, to conquer fears so as to have exciting news to share with friends.
Who I Am
I’m Camilla Downs and mom, to 17 year old Lillian Darnell. Lillian has a chromosome difference called 18p-. This means she is missing the short arm of chromosome number 18. She was diagnosed at 3 years old; although has had the condition since birth as it happens spontaneously as the fetus develops.
On the day she was diagnosed, through the internet, I discovered a non profit organization called The Chromosome 18 Registry and Research Society. This organization has been the hugest blessing to us. The C18 Registry hosts a family conference every summer at a different location as members of The Registry take turns hosting the event. We were finally able to start attending in 2008, when Lillian was 7 years old, as the conference was in Las Vegas (only an 8 hour drive from Reno).
Why I Created This Fundraiser
We have not missed a conference since then. Lillian’s only friends are those she has met at the conference. Those who get her. Those who do not see her differences as something odd, or weird, or a reason to avoid her. She feels welcomed and safe. She has shared with me that she is able to relax during the conference and not have anxiety. Attending the conference every summer, encourages Lillian to spread her wings.
This year's conference is in Colorado Springs and is being held from July 21-24th.
Leading to the 2016 Conference, Lillian chose to face her fear of stairs. She practiced for months leading up to the conference and she did in fact conquer that fear …..
Firsts and Fears:
At the 2018 Conference, Lillian went out to eat with a group of friends. Alone. Like. Without me. FIRST TIME she joined the self advocates doing anything! YES!!! Hallelujah!!
She typed her order in her phone before leaving so she can show it to the host. I put money in her name badge and texted her instructions for paying her bill after explaining verbally how to pay.
Another in 2018: Lillian has never participated in the self advocate panel!!! Listening. A first step!! Wahooo!!!!
2018: Fear of escalators: We’ve always had to use the stairs or elevator when Lillian was with us in the past.
No longer! Lillian rode the escalator on Friday, the 29th, at the Reno-Tahoe Airport! She held tight to me and was worried. Yet, she did it! The ultimate goal is to ride the escalator without me beside her. Wahoooooo!!!!xoxo
2018: Another fear bites the dust. In the past Lillian has chosen to walk throughout the airport attached to my arm. Not the easiest for me while pulling a carry on bag plus her bag.
When we got to the airport in Baltimore readying to leave, I explained I needed her not to hold onto my arm and to just walk beside me.
After sighing, she said “Okay”. And did just that. Throughout the entire Baltimore, Vegas, and Reno airport!
PLUS! This included the HUGEST fear at the airport ….. The PBB. She walked through the passenger boarding bridge NOT attached to me!!! She stepped from the PBB into the airplane NOT attached to me AND walked the aisle of the airplane NOT attached to me!
Hallelujah!! Ahhhhhhh …. Freedom for both of us!!!
2018: While in the airport on the way back home, Lillian went into the airport restrooms without me!! We went from the first traveling experiences all those years ago of having to travel with post it notes to cover up the automatic flush sensor, to going in alone!! Yes, Yes, Yes!!!
2016: The anticipation of and the attendance at the conference encourage Lillian to set goals and accomplishing them. At last year’s conference she got in the elevator, went downstairs, and waited in the lobby for friends .. all without my assistance or presence.
She used the hand dryer and automatic toilet also. About a week ago she walked across the pedestrian bridge alone, without holding onto my arm. Two days ago she climbed two stairs holding onto my arm and plans to reach the top of the stairwell before we leave for the conference. All of these are huge accomplishments for her … “
Lillian Wants to Help Every Year
We have been fortunate to have local non-profits and agencies help us with attending the conference every year. We are a family of three. Myself, Lillian, and her younger sibling, Thomas. As you can imagine, it is incredibly expensive for a family of 3 to fly to the destination, pay for registration, pay for the hotel, pay for the outings, and have money for food. I have been single parenting Thomas and Lillian for the past 12 years and we live frugally. We have lived in a one bedroom/one bath apartment for the past 4 years, we don’t often go out to eat, we don’t go to the movies, and don’t attend events (but we have lots of fun enjoying the outdoors).
Every year Lillian desperately wants to help raise funds to attend the conference. She and I brainstorm for creative ideas. This year she is creating custom poems for any donation amount the donor chooses. Here’s one she created for a lovely supporter in Tasmania ….
Stars shine bright
as diamonds in the sky.
Stars dance all night long
like a bird flapping its wings.
Stars wink at the Moon
like the ocean waves to the Sun.
The moon shines down
as silver in the night sky.
The moon brightens at the Sun
like gold glimmers in the sand.
The Sun glides gracefully
as a swan swimming.
The Sun Blushes when the Ocean
shows the Sun’s reflection
as bright as sparkly snow.
The ocean gently whispers
into my ear like a seashell.
And one for a supporter in Mississippi ….
Unicorns dance like clouds
Leaving little rainbows everywhere.
Unicorns prance happily
as a wave of rainbows everywhere.
Unicorns chase their tails like
dogs shedding pretty
Unicorns watch over us
Like guardian angels.
The unicorn flies into my dream
As I sleep.
A local non-profit donated the bulk of the money to cover this year’s conference. Yet, we are still short. The money was not enough to cover flights for the three of us, so I am driving the 16 hour drive from Reno to Colorado Springs. Our car is 18 years old, yet, in pretty good shape, so it should work out fine. I don’t mind doing this, as long as Lillian gets to be there. And, Thomas too, as there’s an entire track for siblings. He gets much out of this also …. an opportunity to be amongst siblings who get where he’s coming from.
The Chromosome 18 Family Conference
The conference has tracks for each member of the family. Parents and caregivers attend sessions having to do with therapies, planning for the future, mental and emotional health, and many more. Siblings have a track that is led by older siblings. And, the self-advocates have a track as well with topics ranging from self-advocacy, cooking, and entertaining sessions too! A sibling panel presents to parents and caregivers to authentically share their feelings and thoughts surrounding being a sibling to the self-advocate. The self-advocates panel presents to everyone with an opportunity to share their emotions and triumphs. There is a mom’s night out, siblings night out, self-advocate night out and a group outing as well. It is a wonderful and well planned event for the entire family.
How Funds Will Be Used
We just need a bit more to cover a few more nights hotel stay, for food and for outings during the trip. And, it would be great if I could get a new windshield for our car before leaving, as she has a huge crack that runs across and up and down the length of the windshield. Thank you so very much.
How 18p- Manifests for Lillian
Lillian has difficulty articulating words, so she is hard to understand.. This is largely due to the physiology of her mouth and all the parts needed to create speech. She is petite and short for her age. She is 17 years old and most people think she is around 12 years old. Lillian has depth perception and balance issues, so she trips often and falls at times. She has chronic pain that is with her near daily. She also has great difficulty processing strong and unlovely emotions. She is prone to have huge and lengthy meltdowns due to this and from anxiety. She is largely inflexible with her schedule and how she has planned things. And has a difficult time with changes to her schedule.
On the flip side, she is blessed with a beautiful imagination, a gorgeous smile, and loads of silliness! She has an innocent and lovely view of the world that is deeply inspiring. And, she and her brother have been the two greatest gifts and teachers for me. They changed my life, for the better.
With deepest thanks and blessings to all who take the time to read this ... Much love to you .... Camilla