Friday, April 8, 2011
It has been many months since I've last blogged. Life simply caught up with me and there just wasnt enough time in the day. Sophia is now 16 months old and over all she's in good health. This little girl, as tiny as she can be, is the strongest person I have ever known. Talk about durable! She's rolling over, doing some small babbling, loves to drink from a straw or open lid cup, plays with her toys, and her smile can light up any room. She still cant sit unattended, she enjoys standing but cant do that unattended either, she cant eat textured foods, has a hard time drinking juices but she can eventually get it down. This morning, while looking at a Pampers coupon we had gotten in the mail yesterday, my husband asked if seeing things like that make me sad. On the cover there is this mother laying in a field of flowers with her toddler gentling touching her face with the palms of her hands. My answer was a simply "NO." I have accepted this life. I accept Sophia for who and what she is. If we get caught in that realm of saddness then our lives will not move on. We would simply exist in life and not live this life. Sophia reaches out and touches my face on a daily basis. Her soft and gentle touch is something I will never take for granted. I try not to think about the what if's and the what could have been's because that is not reality. My reality is Cornelia De Lange Syndrome. It's doctor appointments, therapy sessions, medications, procedures and surgeries. It's really high highs and very low lows. This diagnosis does not make Sophia who she is. It is a part of who she is but Sophia is Sophia. She is the little girl that refuses to sleep in a crib, bed, or bassinet. She is the girl that must sleep in her swing all night, everynight. Sophia is the girl who communicates with her eyes and simple noises instead of words. She is the girl that loves to play at the park and be outside. She dances with her chicken elmo, smiles back when she see's a smile, tries to walk, and loves to cuddle. She must at all times see someone or she pitches a fit. She will put her head on your shoulder and pat you on the chest. Sophia loves her brothers and really enjoys playing with them. Sophia is Sophia. Sophia is not CdLS, she has CdLS.