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Darling Sophia Hi. For those of you that are new to this site, my name is Sophia Karin Doebbert. I was diagnosed with SMA type 1 when I was six months old. It was a very difficult time for our friends and family. Through prayers, love, and encouragement we have been getting stronger. Please take a few moments to view my pictures and sign the guest book. If you would like a detailed history of events, please read the journal as well as the journal history.
Journal
Tuesday, February 2, 2010 8:31 PM CST Hero of the Day
Yesterday I left Sophia & Evelyn in the bedroom for about 10 seconds to grab something in another room. When I came back, Evelyn was about to fall off of the bed, and Sophia had positioned her powerchair to “catch” her fall. She then proceeded to tell me, several times, “Don’t do that again Mom”. It was an effortless save by Sophia, she acted instinctively to prevent her baby sister from getting hurt. She was so proud of her actions, telling everyone she saw today about what happened to baby Evie.
Lila received the ultimate five-year-old birthday gift from her Godmother Cassie. Cassie took her to dance class last Saturday and then to the Mall of America. They stopped in front of the American Girl Doll store, where Cassie told Lila “Happy Birthday! You get to pick out your very own doll!” Lila’s eyes got huge, and they proceeded to cover the entire two floors of the store before she made her final selection. She decided on a “Just Like You” doll: dark skin with dark, beautiful curls. Cassie pointed out to Lila that the doll had darker hair than hers, but Lila said “that’s the color of my hair in the bathtub”. So Lila is now the proud owner of her very own American Girl Doll. Thank you Cassie!
Sweet baby Evelyn now has two small teeth. She is chewing like crazy (just like puppy Winston) and reminds us of a small, gnawing animal. She is so good tempered and fun. Sometimes I wish there was a pause button I could push just to be able to savor this 8-month-old phase. She is simply a delight, and I love watching her every discovery and expression. She is truly a blessing.
Sophia continues to nuture her love of music. Music has emerged as a very powerful medium in Sophia’s life. She completely loses herself listening to a song while dancing in her chair. She will hear a tune and then hum it right back. She even uses music to clarify speech; if I can’t understand what she is saying, she will sing a few notes of something associated with that word or phrase. “Dancing” becomes the theme from Angelina Ballerina; “cake” equals the Happy Birthday song: and Michael Jackson’s Billie Jean becomes, well, the entire song hummed by Sophia. Sophia also enters a magical world by watching videos on youtube, especially those romantic ones by Taylor Swift and Michael Buble. She will watch them over and over, moving the slider back to her favorite parts when she is one the computer. She will then freeze the frame (such as Taylor Swift kissing the boy in the video) and then print that page about 20 times.
Sophia’s favorite song of the moment is The Climb by Miley Cyrus. I love watching her dance to it, she closes her eyes as she spins around the living room. The lyrics are so fitting for our young hero that now of think of it as Sophia’s song:
I can almost see it. That dream I'm dreaming, but There's a voice inside my head saying You'll never reach it Every step I'm takin' Every move I make Feels lost with no direction, My faith is shakin' But I gotta keep tryin' Gotta keep my head held high
There's always gonna be another mountain I'm always gonna wanna make it move Always gonna be an uphill battle Sometimes I'm gonna have to lose Ain't about how fast I get there Ain't about what's waitin' on the other side It's the climb
The struggles I'm facing The chances I'm taking Sometimes might knock me down, but No I'm not breaking I may not know it, but These are the moments that I'm gonna remember most I've just gotta keep goin', and I gotta be strong Just keep pushing on, but
There's always gonna be another mountain I'm always gonna wanna make it move Always gonna be an uphill battle Sometimes I'm gonna have to lose Ain't about how fast I get there Ain't about what's waitin' on the other side It's the climb
Keep on movin' Keep climbin' Keep faith baby It's all about, it's all about The climb Keep the faith, keep your faith
God Bless, Andrea
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Links: http://www.fsma.org Families For Spinal Muscular Atrophy Website http://www.smasupport.com SMA Info & Support Group aldoebbert@comcast.net Andrea's E-mail Address
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