Ramble ramble. I am just so excited that Cecily's story may be the beacon of hope for some families that receive that startling diagnosis before a child is even 8 months old. I am passionate about spreading hope to others and to show people that a diagnosis is just a guide - you have no idea what your child, your unique and special child can do - unless you give them the room to prove everyone wrong!
There are nights when I question whether all the hard-work for Cecily's Closet is making a difference. Failed grant after failed grant it is hard to convey the value we provide to a Mom or Dad that may need help. But today - seeing that people have found us by searching for a success story I'm invigorated and excited!
Today Cecily screamed when in a hurry I didn't provide her the usual opportunity to pick out her clothes. I chose an adorable outfit and proceeded to get her dressed for school. I realized as she tore at the shirt that she was mad and she felt unheard. I stopped and told her big girls use their words or their signs. I reminded her how smart she is and that she needs to use her new skills to explain to silly mommy what is wrong. She said, in her beautiful voice, "no, that one!" OMG this is a gift! My little diva communicated with a tantrum over a clothing choice but then used her words to ensure I heard her when the tantrum just didn't cut it! I am so proud of her.
Almost four years ago when I was desperate for hope I googled and found a success story for Infantile Spasms. To think that some stranger in a cold, lonely hospital room may be doing the same thing and reading about our mircale child who is proving the impossible possible makes this all worth while and more!
Onwards and upwards!