Owl always love you...
Hoot Hoot...meet this devoted Mom's precious night owl, Charley. Coming up for a theme for these two spaces was easy! Mom lovingly calls her little bug a night owl and so "Owl always love you" became the theme for her bedroom and play area.
Charley Elizabeth is a living miracle that entered this world in 2003 weighing just 2 lbs and 9 ounces. She defied all odds and proved the doctors wrong at every twist and turn and continues to do this today! After meeting her family we can tell that her life is so much bigger and better due to Charley's spirit and the amazing support she receives at home. Her teachers at school credit her parents with always advocating for Charley's safety and welfare. Mom has spent so much time and energy to research how best to care for her little angel, including recently starting a blog for parents of children with special needs. You can follow her blog here: http://mycharleygirl.weebly.com/
Mom was told early on in her pregnancy that Charley would not make it to full term. They gave her the option to terminate the pregnancy and she declined and opted instead for strict bed rest. With love, prayers, and lots of hope Charley slowly began to grow and grow! At birth Doctors told the family that Charley was blind, had two holes in her heart, dislocated hips, contractures in her hands and several more neurological issues that were larger than they had originally expected. Charley has a very rare genetic disorder called DeBarsy syndrome. Her geneticist told us it is so rare that most geneticists will never see a case. Her doctor said, "Charley sees numerous doctors and therapists and has had more medical interventions then most people have in a lifetime. Her limited
ability to communicate can make it harder for her to understand why she must go through all of it, yet despite her challenges she has tremendous spirit."
Charley's life has not been easy but you won't find this family sitting around complaining about her medications, doctor appointments, therapies, etc. etc. Instead, you'll find this family embracing everything Charley loves, like music, her two dogs, and lots and lots of cuddles.
We received several nominations from several different sources for this little angel and the volume definitely caught our attention! When we heard her story and how hard her Mom works to ensure Charley gets the love, attention, support and help she needs to grow and thrive we couldn't wait to get to work! This was our first attempt at a true sensory room. We wanted this space to put the fun in functional and truly help Charley with all areas of her development. After visiting with her therapists at Lindbergh Schweitzer we got a lot of fun and creative ideas to create a sensory room that worked with the owl theme.
Her teacher calls Charley a remarkable survivor. "If you had the opportunity to see Charley participating in learning with her classmates, you would marvel at the bright moments we share each day, even in the face of severe
multiple disabilities. Yes, Charley is challenged to perform tasks that her peers would accomplish without pausing to think carefully about the tasks, but she is learning and thriving in her special education classroom and in her home," she said.
Thank you to returning artist, Emily Dolton of Inside Emily Dolton's Head. This is Emily's tenth room with us... tenth! She is the most dedicated partner, artist, and volunteer. We love working with her on every project because she gives 110% and she is passionate about making a difference in the life of a child. Not only is Emily an amazing artist, she is a walking ambassador for Cecily's Closet and we are so grateful for her continuing support of our little organization. On this room Emily incorporated the family's wish list items, and made our very first sensory integration board. She gathered textures from all over and incorporated them into the owl theme. In addition, the beautiful tree on the wall is actually a ladder that Charley can use to hang on to - as well as touch the various sensory objects that hang from every rung! I have never met a person that donates more of herself to the community. We are so lucky to have her on our team and Charley and her family are lucky that Emily took the time to visit with therapists to ensure this room was right for Charley!
And a special thank you to Steve for serving as our general contractor on this space! He built the custom window frame so we could have safe and sturdy decor above the window. In addition, he mounted the sensory ladder so Emily could convert it into a tree and ensured that Charley's new swing in her place space was safe and sound and ready for her arrival! Steve had a long drive but he never complained! We are so grateful for his time and talent. He is a joy to work with!
And where would we be without the amazing friends and volunteers we met from UPS? Thank you Christina and Julie for joining us again on a room... and to our drill master, Hunter. He not only was the fastest tool finder but he happily played with Charley while we worked out some little hiccups in the room! We are grateful.
Thank you to our donors, family and friends for making Charley's Sweet Dream room makeover possible! (And ps. Thank you Dad for making a 2nd trip to make sure that tricky shelf stayed put!"
Charley Elizabeth is a living miracle that entered this world in 2003 weighing just 2 lbs and 9 ounces. She defied all odds and proved the doctors wrong at every twist and turn and continues to do this today! After meeting her family we can tell that her life is so much bigger and better due to Charley's spirit and the amazing support she receives at home. Her teachers at school credit her parents with always advocating for Charley's safety and welfare. Mom has spent so much time and energy to research how best to care for her little angel, including recently starting a blog for parents of children with special needs. You can follow her blog here: http://mycharleygirl.weebly.com/
Mom was told early on in her pregnancy that Charley would not make it to full term. They gave her the option to terminate the pregnancy and she declined and opted instead for strict bed rest. With love, prayers, and lots of hope Charley slowly began to grow and grow! At birth Doctors told the family that Charley was blind, had two holes in her heart, dislocated hips, contractures in her hands and several more neurological issues that were larger than they had originally expected. Charley has a very rare genetic disorder called DeBarsy syndrome. Her geneticist told us it is so rare that most geneticists will never see a case. Her doctor said, "Charley sees numerous doctors and therapists and has had more medical interventions then most people have in a lifetime. Her limited
ability to communicate can make it harder for her to understand why she must go through all of it, yet despite her challenges she has tremendous spirit."
Charley's life has not been easy but you won't find this family sitting around complaining about her medications, doctor appointments, therapies, etc. etc. Instead, you'll find this family embracing everything Charley loves, like music, her two dogs, and lots and lots of cuddles.
We received several nominations from several different sources for this little angel and the volume definitely caught our attention! When we heard her story and how hard her Mom works to ensure Charley gets the love, attention, support and help she needs to grow and thrive we couldn't wait to get to work! This was our first attempt at a true sensory room. We wanted this space to put the fun in functional and truly help Charley with all areas of her development. After visiting with her therapists at Lindbergh Schweitzer we got a lot of fun and creative ideas to create a sensory room that worked with the owl theme.
Her teacher calls Charley a remarkable survivor. "If you had the opportunity to see Charley participating in learning with her classmates, you would marvel at the bright moments we share each day, even in the face of severe
multiple disabilities. Yes, Charley is challenged to perform tasks that her peers would accomplish without pausing to think carefully about the tasks, but she is learning and thriving in her special education classroom and in her home," she said.
Thank you to returning artist, Emily Dolton of Inside Emily Dolton's Head. This is Emily's tenth room with us... tenth! She is the most dedicated partner, artist, and volunteer. We love working with her on every project because she gives 110% and she is passionate about making a difference in the life of a child. Not only is Emily an amazing artist, she is a walking ambassador for Cecily's Closet and we are so grateful for her continuing support of our little organization. On this room Emily incorporated the family's wish list items, and made our very first sensory integration board. She gathered textures from all over and incorporated them into the owl theme. In addition, the beautiful tree on the wall is actually a ladder that Charley can use to hang on to - as well as touch the various sensory objects that hang from every rung! I have never met a person that donates more of herself to the community. We are so lucky to have her on our team and Charley and her family are lucky that Emily took the time to visit with therapists to ensure this room was right for Charley!
And a special thank you to Steve for serving as our general contractor on this space! He built the custom window frame so we could have safe and sturdy decor above the window. In addition, he mounted the sensory ladder so Emily could convert it into a tree and ensured that Charley's new swing in her place space was safe and sound and ready for her arrival! Steve had a long drive but he never complained! We are so grateful for his time and talent. He is a joy to work with!
And where would we be without the amazing friends and volunteers we met from UPS? Thank you Christina and Julie for joining us again on a room... and to our drill master, Hunter. He not only was the fastest tool finder but he happily played with Charley while we worked out some little hiccups in the room! We are grateful.
Thank you to our donors, family and friends for making Charley's Sweet Dream room makeover possible! (And ps. Thank you Dad for making a 2nd trip to make sure that tricky shelf stayed put!"
