I Wish I Wasn’t An 18p- Girl: Moment of Defeat – Take Two


I’m pretty sure Lillian has said something like this at least once in the past. I’m not sure exactly why, but this time it felt like a punch to the gut.

Lillian falls frequently due to depth perception and balance issues. She fell pretty hard on the tile floor tonight, and this is what prompted her to make the, “I wish I wasn’t an 18p- girl” statement. She’s okay. Got one heck of a bruise on her elbow. I told her it was okay to feel like that and to wish she didn’t have 18p-. I also told her that 18p- is not who she is. I told her she is Lillian, and 18p- is just a special quality she has. She smiled and said, “I know.” Twenty minutes later she was fine and had forgotten all about her comment.

I didn’t though . . . Guess you could say this is my Moment of Defeat – Take Two.

The moment after she was in bed, I had that “time standing still” feeling and the tears began flowing. I began to question everything I’m doing, my belief system, my thought processes. I had the “Who do you think you are?” and “What are you doing?” thoughts in the mix too. The last time something like this hit so hard was in May 2010. I wrote about it here: A Moment of Defeat.

Why? Why did this statement, on this particular night, this particular week have this impact on me? Maybe partly due to the book I’m about to release in which I share about myself, my past, my thought processes and my belief system. I’m on the edge, facing some fears and taking hold of that vein of courage within me. Then, I’m sucker punched by one little statement from the little girl who inspired me to “be” where I’m at and to write this book.

Maybe partly due to needing a break from this beautiful young lady. Maybe partly due to feeling a bit guilty as I’ve not shown patience lately in understanding what Lillian is trying to say to me. Guilty because there are times when I cringe when I hear her begin to speak to me. I know I will not understand half of the words she speaks and I will have to focus 100% on what she’s trying to say and it will take double or triple the amount of time to understand one little sentence . . .

**LOVE OFFERING** If you find this content helpful, I invite you to toss a tip in the love offering bowl. With oceans of gratitude … Camilla ….

love-cards-in-a-basket-october-2016

Yep, this one hit hard. Only for a moment though (well, okay, maybe a few hours!). I remind myself that I DO exhibit patience more times than not, I DO choose to have a sense of humor and laugh about it with Lillian. I remind myself I KNOW why I wrote this book. I KNOW that my belief system and thought processes are right for me as this is what brought me to the acceptance and happiness that has always been right here within me. I remind myself that I am sharing it with others in the hopes that something I’ve written will give someone hope, encouragement and inspiration. I remind myself that just a few hours earlier a little girl with wisdom filled eyes looked in mine and said “I know.”

 

O is for Observe

Camilla and Lillian

“Most people see what is, and never see what can be.” -Albert Einstein

Observing, paying attention, being aware of the present moment.  What’s happening, who you are with, are you having a conversation? Are you really being present for the conversation or are you thinking about all those bills that are due or what you’re making for dinner or what happened on the last episode of your favorite show.

Observing and paying attention are keys to our own happiness and success.  In addition, they are crucial in our function as special needs parents.  Have you noticed that many with intellectual disabilities are more intuitive than us typical folks.  They can sense insincerity, they know when someone is not being present, not listening to them, “faking” kindness. {Just had someone point out that they think we ALL sense insincerity.  I’m thinking I didn’t use the proper words to describe what was going on in my head! From my perspective, as Mom to Lillian, I have noticed that Lillian is super sensitive to adults in her charge who are insincere – even when I sometimes don’t initially sense it.  I’m also not saying that those with intellectual disabilities are “more” than those of us who have all of our genes.  I believe some who are missing genes have a heightened or increased awareness in some “areas”.}

How will we guide our kids with special needs into a fruitful, happy and successful future if we are not present for them?  Observe their likes, dislikes, what are they good at doing, favorite hobbies and maybe they have topics or interests they seem obsessed with . . . the weather, the time, making lists, making a plan and sticking to it.  Observe these and then use these qualities to their advantage in life.  They like these things for a reason.  It’s not up to us to figure out why they like or don’t like something or why they are obsessed with a topic.  Let’s observe, be present and give them every single opportunity we can to blossom and use the special and unique gifts they have.

I recently returned from the Chromosome 18 Conference and I was humbled by the young adults.  {The photo above is Lillian and I at Reno/Tahoe airport headed to the conference in Indy.} One of the last conversations I had with my Chromosome 18 family was in the hotel restaurant having lunch with 20 year old Kati. Kati’s mom, Deb, and I began talking about movies and I mentioned the Lion King. Kati said that was the first movie she had ever seen.  Then she proceeded to tell me the second movie, the third movie, the fourth movie and on and on up to the Last Harry Potter movie she had seen.  She remembers this about books she’s read also.  I don’t know about you; but I find that pretty darn amazing.  I was in awe of this young lady.  How many of you remember every single movie you have seen beginning with the very first one.  Kati loves to plan events and trips.  She is planning a trip to Vegas for her 21st birthday which is a little less than a year from now.  She loves horses and wants to travel to New Zealand and Florida.  This young lady is amazing and look at the unique and special qualities she has been gifted.

I was also intrigued by how many of the young adults have as a dream working with animals and/or children.  It seemed to be a very common thread.  I asked my friend, Catherine Burzio, if she thought it was that each was simply picking up or borrowing what the previous young adult had said.  She said “No, that’s not it at all”.  It’s the unconditional love that animals and young children give.  I fully understand that for one reason or another there are reasons that some of these young adults cannot work as a vet or even a vet assistant or in a child care facility.  But, do you think if we observed them more and were present more we and possibly a coach and our community could find or create just the right fit for them.  A fit that gives them the opportunity to do what they love and enjoy and are good at and earn money for themselves.

I don’t know and I’m not at all saying this is the right technique for everyone . . . I’m just thinkin “out loud”.  What do you think?

{Wanna ask your Facebook friends what they think? Press here to share it with ‘em and/or if you liked this post press that little ole like button below! Thanks!}

A Moment of Defeat

On Wednesday, I watched my daughter, Lillian, as she got off the school bus, struggling with her backpack and walking to her destination in the back of the school.  My heart sank as I stood watching all the other kids bouncing around running and walking normally with their backpacks with not a struggle in sight.  Tears welled in my eyes; it was just one of those days.  She absolutely refuses to wear a backpack on her back and thus ends up carrying it by the little loop on the top.  It’s almost as big as she is.

As I drove home, it seemed as if time stopped for about 15 seconds and I felt so completely and utterly alone.  I chose to feel sorry for myself for a minute and welcome a wave of defeat ~ sorry that I was not blessed with a “typical” little girl.  A little girl that a mother can share life’s little moments with, talk with, have an actual verbal conversation with, hug and snuggle with, watch grow and blossom like most other girls.

I and moms like me have a different life with our daughters.  We watch them struggle with something as simple as carrying a backpack to class, struggle to speak and talk in a way that can be understood with mounting frustration because their little mind is overflowing with all the right words and phrases; but, the mouth, tongue and lips do not work as they should so we can understand.  We watch them struggle to dress themselves, struggle to open things, cut things, play on the playground.  We must listen to their complaints of tummy aches, this and that aches and not know why and add that to our list to try and figure out.  We don’t have the typical “How’d your day go and what’dya do with your friends today honey” conversations?  Ours are “How was your day today?”  And we get a thumbs up or thumbs down. Conversation over.

Only a minute though . . . .

I have a beautiful daughter who shines like no other.  She has a warm loving heart.  AND she is one stubborn hard headed little lady.  I am blessed beyond blessing that she is stubborn and hard headed.  This means she keeps on trying and keeps on trying and doesn’t give up as quickly on whatever she is trying to accomplish.  I have had moments with her that made my heart feel as if it would burst with happiness and joy.  When a speech impaired child tells you for the first time “I Love You” and says “Momma” for the first time, it is a feeling like no other.

**LOVE OFFERING** If you find this content helpful, I invite you to toss a tip in the love offering bowl. With oceans of gratitude … Camilla ….

love-cards-in-a-basket-october-2016

This beautiful little lady, who is a self proclaimed fairy, will and does touch the lives of whomever she encounters in such a beautiful way that cannot even be described.  I am her mother for a reason and she my daughter for a reason.  Lillian has a beautiful soul and had some lessons to teach me and will continue to teach me.  She does at times help me to stay grounded.  I find myself wanting and feeling I should be doing more for Lillian; but know that whatever I need to do will happen as it should and I should not force anything.

It is my belief that I need these 15 minutes of feeling sorry for myself and moments of defeat to enable me to come out on the other side stronger and more focused on the path I am on and headed towards.  What about you? Do you feel moments such as these (for whatever reason) are needed and helpful?

Go here to read “A Moment of Defeat – Take Two”

I Wish I Wasn’t An 18p- Girl: Moment of Defeat – Take Two

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.

Latest Articles: