Cecily's Story
We have to say we have been torn about putting this information out into the universe. We don't want to violate the privacy of our baby girl - or the rest of our lovely family. However, Cecily has a wonderful story to tell. A story of hope and love. She has impacted our lives and the lives of those around her for the better. Her story is what inspired us to create this non-profit and it seems like the greater good is gained by sharing how Cecily is beating the odds - despite some bumps and bruises along the way.
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Cecily's BlogFollow the ravings, rantings, stories, and challenges of a Mom of three as she attempts to see everything with the glass half full! Who knew being a Mom could be so much fun and so much work! Warning... this blog does not come with spell check...Read more
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And so the story of Cecily...Cecily Judith was born on March 7, 2009. She looked perfect and the doctors gave her a clean bill of health. As the pregnancy had some hiccups we were relieved. We thought we had dodged a bullet! We thanked God and looked forward to moving forward. Fast forward to Cecily's 2-week check-up when we were told it might be a good idea to see a geneticist. (hmm... what?) But truth be told I had a pit in the bottom of my stomach during that appointment and I wasn't really surprised. As a Mom I had a suspicion that something was different with Cecily. Fast forward through many developmental evaluations and specialist visits. At the end of the day the conclusion seemed to be the same. We were told we'd just have to wait and see how Cecily progresses but that she would benefit from Physical and Occupational therapy. Fast forward to October 2009, our second (of what would be many...) hospitalization at Rady Children's Hospital in San Diego.
Cecily was just seven-months old when were given some very grave news. The neurologist came into our baby girl's room and sat my husband and me down. He said he didn't want us to have to wait all night for the information. My heart sank and I felt like I was having an out of body experience. We found out that Cecily was suffering from infantile spasms. The little body jerks that Cecily had started were not a passing phase but rather a form of childhood epilepsy. The prognosis is not favorable - especially if a child presents with developmental delays prior to the seizure onset. We were given so much information that night. Information about drugs with side-effects. Information about brain damage. Information about information about information. My husband left to take care of our precious son and I sat with my blackberry googling everything and anything about children who suffer from this childhood form of epilepsy. I started to have a pity party. I cried. I looked at Cecily as she continued to seize and I wanted to scream. I wanted to pick her up and make it stop. And then I heard a helicopter landing. I heard a call to the Trauma team. I stood looking at Cecily and I thanked God that I could reach over and pick her up. I could see her breathing, sleeping and she was going to be ok. I picked up my phone and again I started to Google. I found a success story for a child that was diagnosed with infantile spasms and I stopped reading. I had hope. I sent a thank you email to my parents, my husband and my sister for being a source of strength for me over the last seven months and I tried to sleep. I'm not going to say every day since then has been easy... but whenever I start to stress, panic or worry I remember how lucky we are and we give thanks as a family for all the positive things in our lives. We thank God that we have three children, all special, and all perfect to us in every way. Cecily is a trooper. Her brother is a patient supporter. Her younger brother is a love bug. We were told Cecily may never walk, talk or have the quality of life you dream about. Cecily continues to defy the odds and with every passing day she surprises us. She walks with authority, she has more than 100 signs, she is sharing her sweet voice and after a three week intensive feeding program at CHOC in Orange County in 2013 she is now eating by mouth! We still have the g-tube but she is on her way! She loves to ride horses, dance and wrestle with her brothers. She communicates with her eyes, her touch and her heart. She is seizure free. She smiles and giggles and loves to be silly. She gives kisses and hugs and enjoys her life despite some painful bouts along the way. She is a success story. The doctors are amazed with her progress. She is proving the impossible possible. We are happy. We remain optimistic. We have hope. Onwards and upwards! |
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