Menu
6Nov

Journey to Special Needs Parenting – Part 1 of 2

By , November 6th, 2012 | Parenting | 13 Comments

Team TLCIt began one December evening in 2004 while we were eating dinner. The phone rang. I saw that it was my daughter’s pediatrician so I answered it. She apologized for calling so late; but she had received the results of Lillian’s blood tests. She went on to tell me that Lillian had a deletion of the short arm of her chromosome #18. Her condition is rare and does not have a name. It was referred to as 18p- since she was missing a piece of the short arm of #18. I cannot recount the details of the rest of the conversation except that she was listing all of the specialists we should see to ensure Lillian did not have medical issues that needed to be addressed. I broke down, began to cry and could not talk to her anymore. I handed the phone to my husband … and so began this Journey, the Journey of being a parent to one with special needs. A Journey that seemed daunting, overwhelming, scary, and unwanted on that evening and the few months after that call.

This one phone call changed the direction of my life. It landed me in a different place than I had ever planned, or dreamed I’d find myself. Following that call and the days after, Lillian’s current and future life saturated my mind and thoughts. Expectations I had built since the moment she was growing in my belly disintegrated and vanished.

I knew Lillian was delayed in several areas, with her walking, talking, crawling, sitting up, and such. I just kept telling myself it was because she was born a month premature. The pediatrician urged genetic testing to rule out any other issues. I was convinced that the test would come back fine. I was not accustomed to being proved wrong. Life was about to teach me a lesson … which did, in fact, turn out to be a GOOD lesson.

About Lillian
18p- is most noticeable in Lillian’s speech. She talks a lot, but simply cannot articulate words in a way that can be understood. Lillian is delayed in the development of her gross and fine motor skills, and needs a great deal of work with her proprioceptive system. She has balance and depth perception issues, and many sensory issues, fears, worries.

Lillian’s strengths are in spelling, reading and her use of computers. She likes making a schedule and sticking to it. She also loves to create and write her own stories, poems and jokes. Lillian is a genuinely happy person. Her smile lights up an entire room. She has a warm, loving heart, yet she can be one stubborn hard headed little lady.

To be continued Thursday, Nov. 8. 

Camilla Downs is an advocate of Living an Adventurous, Inspired & Different Life, a Special Needs Parent Mentor, Motivational Speaker & Author of ‘D iz for Different – One Woman’s Journey to Acceptance’. Camilla is Mom to 11 year old Lillian and 6 year old Thomas. Lillian is a child with special needs who was diagnosed with 18p- when she was 3 years old. They call themselves Team TLC and share their journey on the Team TLC website (http://www.TheTeamTLC.com). She is also available for freelance writing opportunities and guest blogging. Camilla can be reached via email to camilla@camilladowns.com. To learn more about Camilla and the book visit her website at http://www.CamillaDowns.com. To learn more about Chromosome 18 abnormalities visit http://www.Chromosome18.org.

13 comments so far

  • Camilla Downs Says: November 14, 2012 at 11:12 am

    Absolutely Teresa .. The more we open up and share the more we come together … Thank you for continuing to support the special needs community. Bless you Teresa!

    Reply
  • Teresa Says: November 10, 2012 at 7:24 am

    Thank you, Camilla, for writing this blog. Sharing our experiences helps us realize we aren’t alone. I lost my 18q infant son this summer but I still enjoy reading the stories of other children on this journey. God bless.

    Reply
  • Camilla Downs Says: November 9, 2012 at 5:33 pm

    Thank you Robin!! I’m so happy that Team TLC inspires you … that’s why I do what I do … Thank you for continuing to support us!!

    Reply
  • Robin Says: November 8, 2012 at 10:31 am

    Camilla, I’ve had the pleasure of getting to know you, your children, and your story. You are a true inspiration and I adore you all! Thank you for continuing to share.

    Reply
  • Camilla Downs Says: November 8, 2012 at 10:00 am

    Thank you Tele and Mary Clare …. I’m truly blessed to have realized that sharing my/our life with others is my purpose. Everything I put out there is created with tons of love … Grateful to both of you for stopping by!!

    Reply
  • Mary Clare Tarpley Says: November 7, 2012 at 9:13 pm

    Thank you so much for sharing your story with us Camilla. You inspire me. Can’t wait for more entries!!!

    Reply
  • Tele Raack Says: November 7, 2012 at 9:09 pm

    It is truley a gift for you to share your family’s experiences for the benefit and growth of others.
    Love the warmth and genuiness that you do it with!

    Reply
  • Camilla Downs Says: November 7, 2012 at 12:25 pm

    Thank you so much Kat for your input and encouragement. Love the left instead of right analogy!

    Thank you Clare for your encouraging words! So much appreciate you taking the time to read the post!

    Thanks Kimberly!! It’s only gonna get better from here … The special needs community is stepping up and advocacy continues to grow!

    Thank you Wendy!! In preparation I reached out to my Chromosome 18 family for personal accounts of their initial feelings … You are so right! There is a definitely a common thread amongst us!

    Thank you Susan!! I’m happy and grateful that by sharing our lives with others we encourage, give hope and bring a smile to their life!!

    Reply
  • Susan Says: November 7, 2012 at 8:59 am

    Rock on Camilla and Lillian. We are better because of you both (and Mr. T). :)

    Reply
  • Wendy Grossman Says: November 7, 2012 at 7:48 am

    This sounds so similar to so many who have experienced this! Thank you and I look forward to the continuation.

    Reply
  • Kimberly Phipps-Nichol Says: November 6, 2012 at 5:54 pm

    Thank you Renown for sharing such relevant and first person stories as this with our readership. We need more parents of kids with different abilities to understand the support and love that is available to them if they know where to go. Much respect!

    Reply
  • Clare Dreyer Says: November 6, 2012 at 5:47 pm

    Thank you Camilla for sharing the story of your Journey. I am sure so many parents can relate to your initial shock of finding out that you were a mother of a child with special needs. You are truly a role model of how to move through this Journey of raising a special needs child successfully!

    Reply
  • Kat Simmons Says: November 6, 2012 at 2:37 pm

    Wonderful, inspirational and heart warming. Sometimes when life gives us a left, when we were hoping for a right, the ride and scenery turn out much different than we had expected, but end up helping others on the same path. I will look forward to hearing more about this story, and what she has done on her unexpected, but amazing journey with Lillian.

    Reply

Leave a comment

Make sure you enter the * required information where indicated. Please make sure you enter the * required information where indicated. Comments are moderated and must be in line with our social media guidelines.