It 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.
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 firstname.lastname@example.org. 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.