Special Needs: Lilac’s Angel Visit

Lillian’s class participated in NaNoWriMo and she chose to write a collection of short stories. Reading her notebook brought my eyes to sweating … xoxo

Here’s one of them:

Lilac’s Angel Visit
Written: Lillian

Once upon a time, Lilac’s prince had died and Lilac was a poor queen but one night, Lilac had been visited by Lilac’s prince angel. He had said, “Respect all other angels like you do with me.” And so her father, stepmother, stepsisters, and their princes’ angels came along with Lilac’s prince angel and they had said, “Keep your confidence and hopefully you will strengthen your courage.” Then one night they stopped visiting and left Lilac alone because she had enough courage to be super-duper happy. To this day, she’ll tell you to keep confidence and you will soon build up courage to be super-duper happy.

She Flew Into the World on September 14 2001

……. And she Blew out all 12 birthday candles on September 14 2013 …

Lillian literally came flying into this world on September 14 2001. She wasn’t supposed to arrive here until sometime in October 2001, but I was induced a month early as “they” were worried that she had stopped growing and assumed my placenta had quit nourishing her. If we had known then what we discovered three years later (that she has a chromosome difference called 18p- or 18p deletion), we would have known why she was so small and not growing much.

I had planned on having a natural birth in the gigantic jacuzzi style tub at the Birthing Center attached to my Ob-Gyn’s office. I had my room all picked out and had attended all of the birthing classes leading up to the big event. I was the type that when I decided I was going to do something I put my all into it. I studied everything I could find and get my hands on about natural birthing. I practiced meditating and visualizing what would be happening in my body as the birthing process began and progressed. I read about and studied Natural Childbirth the Bradley Way: Revised Edition (amazon affiliate link) and was on my way to having this baby girl the exact way in which I wanted.

Then, one month before her due date at my regular check up, they were worried that she had not grown. I was sent to a specialist who put me on bed rest for two weeks to see if that helped her grow. I used to be a full blown Type A personality and this was devastating to me. I had planned on working right up until she was born so I would have more time off. I had planned on birthing her in the birthing center. My plans were getting all screwed up and I didn’t like it! (I DID get to have Thomas at the awesome birthing center and DID get to experience a water birth for him!! I arrived at about 9:00 pm on November 13, 2005 and went home a few hours later around midnight!)

After two weeks of bed rest, she was checked again for growth. There had been no growth so it was advised that I be induced right away. We agreed and I gave instructions that I did not want any medications as I still wanted to experience natural child birth, even if I wasn’t getting to experience it in the way I originally wanted.

I kept reading my books and studying right up until we checked into the hospital on the morning of September 14, 2001. I even took some of them with me! After we got settled, the pill was inserted that would induce contractions. Later that afternoon I began having contractions. The contractions didn’t have a pattern really .. coming and going with no consistency at all.

I was doing pretty good at not giving in to the pain, instead focusing on what was happening in my body and with that precious little body  and soul inside of me about to make it’s way out into this World. At times when I began to lose focus, Lillian’s dad did a really good job at bringing my focus back to what was physically happening instead of my mind focusing on the pain.

Of all things, I worked through each contraction by chanting the vowels. I know. Crazy! I had read about the chanting and just skipped over it as I knew that was just something I would not be doing! I went with it. It was working in keeping me relaxed and letting the contraction happen instead of tensing up. I also visualized what was actually happening inside of me. That helped a great deal also.

My Ob-Gyn visited one more time before leaving and told me I would most likely be there through the night and would birth in the morning. When she left, I looked at Lillian’s dad and told him there was no way in heck I was doing this for that long. I was going to relax and have that baby NOW!

The hospital did not allow water births. However, they did allow you to sit in the tub during contractions and up to the birthing moment. I got into the tub and it felt sooooooo good. The contractions sped up rapidly as I was able to relax more and relax into the contractions. We could see Lilian moving down the birth canal headed towards the exit! I had already decided that for me and my baby and our birthing experience, a water birth was the right thing for us. I am a rule follower too, mostly. So I stayed in the tub until I knew she was about to make her exit.

When I felt her head very close to emerging, we notified the nurse that Lillian was about to be joining us. They said they’d be right down and I will never forget the look on that nurse’s face when she entered the bathroom! She said, “Oh my goodness. You’ve got to get out of the bathtub!” My immediate response was “No” as I was about to have a contraction. She reminded me that I couldn’t birth in the water and I said I’d get out after the next contraction.

I didn’t even get a chance to get my gown back on before lying down, having one or two more contractions and that little girl flew out! Literally! My Ob-Gyn didn’t make it back in time and the attending doctor had just come into the room. He said, “Don’t push yet” and I said, “Are you freaking crazy? My body says to push!” So I did and out she flew still in the safety and warmth of her amniotic sac. He had to catch her. Nature did not care if they were not ready!

I felt absolutely amazing after that .. euphoric! I kept thinking, “Oh my good golly! I just had a baby. And I did it naturally!” I felt so strong and full of energy … Like I could do anything! It’s a feeling like no other and one I have not felt since then. I have come close but nothing can match that feeling.

I was ready to go home shortly after that and they would have released me after 24 hours but Lillian needed to get her temperature and blood sugar regulated. We still didn’t know at the time that she had 18p-. I was walking down the hall a few hours after delivery and one of the nurses said, “Who are you? You are something else!”

We stayed in the hospital for 4 days waiting for Lillian’s temperature and blood sugar to normalize. We were finally released and headed home with a beautiful little 4 pound 5 ounce fairy angel!

Now as I watch her dance around the room, singing words that only she understands, talking with her imaginary friends, I think back to the night that she flew into the World.

Lilian is 12 years old now and for the first time ever at her birthday party she blew out her candles on the first try .. ALL 12 candles! This may not seem like much, but because of the shape of her mouth and lips she has not been able to blow like you and I can … Until NOW!

Lillian’s brother, Thomas, was so excited for her! You can see him about to jump with excitement in this picture. He gave her a big hug afterwards. He couldn’t help himself! Lillian does not like hugs but I think she understood and was a little embarrassed with all the fuss that he and I were making in front of her friends! I kind of like that it’s blurry because I thought for sure I’d be taking more than one and didn’t steady my hand before taking this one. I didn’t get a chance to take another … She blew them candles out!!

Here’s a video of her trying to blow out a candle from January 2011. You can see how far she’s come with this skill!

A fairy angel FLEW into the World at 11:27 pm on September 14, 2001 and twelve years later she BLEW out 12 birthday candles. On. The. FIRST. Attempt! You Go Lillian Paige Darnell, You Go!! I love you unconditionally, forever and ever, to eternity, and to the moon and back!

Special Needs Book Review Interview: Hope and Guidance

Hope and Guidance to Parents of Children with Special Needs: Interview with Camilla Downs

Since her book’s publication, Camilla Downs has undergone her own professional transformation with a career change from social media consultant to special needs parent coach and mentor, offering hope and guidance to others parenting kids with special needs. Congratulations Camilla on all your achievements! Thank you so much for introducing your book, D iz for Different: One Woman’s Journey to Acceptance in a guest post you can find here. I am looking forward to learning more about Camilla Downs and her next book in this post for our Author Interview Series.

Lorna: When asked what is your book, D iz for Different: One Woman’s Journey to Acceptance about? What do you answer?

>> Camilla Downs >> In general this is a self-help book for anyone looking to reach acceptance of themselves, those needing to dig down deep for the courage within themselves, or someone looking for guidance on finding the gift in a situation or event. Specifically, this is a book for parents of children with special needs to reassure them that they are not alone and to encourage and inspire them. Each chapter is a letter of the alphabet and each chapter concludes with a Tip for the Journey. Read the entire interview by clicking here.

Thanks Lorna d’Entremont for the pleasure of having you interview me!!

Renown Scribbles Guest Post – 8 Tips to Smooth the Special Needs Parenting Journey

This Special Needs Parenting Journey is going to be full of up and down moments. I’ve put together a few tips in the hopes that you find a thing or two that will help smooth this journey. I realize these may not be helpful directly in the midst of a “down” moment. I suggest you put these aside and focus on them when you are having an “up” moment. Or, at least a calm moment in between the ups and downs ….. Click here to read the entire article.

Renown Children’s Hospital Scribbles …. Journey to Special Needs Parenting

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Tweet I recently got the privilege of guest posting on our local children’s hospital blog. Head on over to the  Renown Children’s Hospital Scribbles blog to read the full posts y’all! Part 1 – It began one December evening in 2004 … Continue reading

17 Easy and Free Ideas on How to Rejuvenate Yourself

I know I’m not alone in having those times (far too many) when my shoulders and neck have made themselves at home nestled right under my ears. Now, although my shoulders may be happy there, the tension this creates is not happy news for me and my brain!! I also know I’m not alone in having zero to very low funds to invest in rejuvenating activities so I’ve put together this easy and free list in the hopes that you find a thing or two that works for you.

  1. Laugh!
  2. SMILE … even when you don’t feel like it … smile especially at those you love.
  3. Feeling overwhelmed, angry or sad? Take deep breaths and drink a big glass of water.
  4. Step outside for a few minutes of fresh air.
  5. Turn on your favorite music and DANCE for a few minutes … or more!
  6. Go outside and gaze at the moon and stars.
  7. Clean for a few minutes … this ONLY works if you clear your mind and solely think about your task at hand.
  8. Keep a Happiness and/or Gratitude Log … Whenever you have a few minutes write in it …
  9. If you have a flower garden, step outside and SMELL THE FLOWERS!! Smell them, touch them and admire them. Think about ONLY the flowers.
  10. Spend a lot of time in your car? Listen to inspirational audio recordings. Better yet … make your own, recorded in your own voice.
  11. Stop and stretch for a few minutes. Stretch your arms to the sky, bend over and touch the floor. Open your arms wide and stretch.
  12. In the thick of an unpleasant situation, say to yourself, “I am forever undisturbed.” This helps to create a buffer between you and whatever is happening.
  13. After everyone’s in bed, instead of escaping with television drama, try this instead … read 10 or more pages in an inspirational, self-help or humorous book.
  14. When a friend or family member gives you a break to run errands or go to appointments for yourself, build in an extra 10 minutes. Go for a quiet walk with those 10 minutes. Sometimes a 10 minute walk is all you need to recharge.
  15. While waiting in lines, try not to read the tabloid headlines. Take deep belly breaths. Release all worries, thoughts of yesterday and tomorrow … completely empty your mind with each exhale. Do this at least 3 times. Next, breathe in peace and joy. Think of yourself as a sponge soaking it in.
  16. While waiting for your child at therapy appointments, try not to sit in the lobby. Go sit in your car or outside somewhere. Use all of your senses. Just sit and listen to the sounds of nature. Feel the breeze or the rain or the grass. Look around you and think about only what you see. Do you see flowers or trees? Think about the shape and color of the flower and/or tree and whether it’s smooth or rough, etc.
  17. Print this list and keep it in your purse and your car …

Now that you have a starter list, add your own ideas and personalize this list. Be creative and have fun with it. What do you think? See some on this list you plan on trying right away? Please share your thoughts for easy and free ideas for rejuvenation!!

Lillian and Being Different Presentation

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Tweet It’s that time of year again … Lillian’s Birthday!! Happy Birthday Lillian!! Every year, except last since I homeschooled her last year, I give a “Lillian” presentation to her classmates. This began in the first grade because her classmates … Continue reading

Spreading Acceptance and Kindness

I’m so excited!!! Prepping for my annual “Lillian Presentation”. Every year I present to Lillian’s classmates about her differences. This year I’ll have a larger audience as all of the 4-6 grade teachers want me to present to their students instead of just Lillian’s class! WOW!! I’m thrilled to be given the opportunity to have these little minds to inspire and educate … My desire is that I say just the right thing, in just the right way to inspire at least one of them, hopefully more, to accept themselves just as they ARE and to carry that forward to acceptance and kindness towards those with differences … The magic happens this Friday, the 14th … not just any Friday and not just any 14th …. It’s a very special inspiring little ladies birthday that day too …. Rock on Ms. Lillian … Keep on shinin girl …. ♥ ♥ ♥

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. http://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)

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 . . .

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.”