Angels in Action
Shea teaches himself to read ! By Carol Pulver of Florida Angel Mom to Shea 22 years old , AS Del +
Shea ( pronounced Shay ), our youngest , weighed a whopping 6 ½ lbs at birth . The largest of our 4 sons ; his delivery followed an unremarkable pregnancy and he was born close to my due date . Shea ’ s Apgar scores ( the tests done shortly after birth ) were all normal / high . He had all his fingers and toes and everything was wonderful . Problems began in the next couple of days when Shea had difficulty nursing . He continued to have problems feeding and was back in the hospital at 6 weeks with “ failure to thrive ” ( the catch all phrase ). While in the hospital , a visit from a speech therapist alerted us to the low muscle tone in Shea ’ s cheeks and his tongue thrust causing the inability for him to sustain a suck for more than a few seconds . At home , as we worked to make sure Shea received the nourishment he needed , we began to notice some sensory issues . Moderately loud noises were very upsetting to him , he seemed to startle easily and he wasn ’ t meeting the milestones we were expecting in his development . The pediatrician told me I was worrying needlessly , that Shea was just a little behind in his development . Seeking a second opinion from another pediatrician , I was told to immediately schedule a neurology consultation , get an EEG and do blood work to check for abnormalities . Up until this point , though my mother ’ s intuition was telling me something was not right , I still trusted our family pediatrician to know more than I did . I was wrong . I learned to listen to that intuition ; to act on it . Through the visit with the neurologist and the blood work , we received some answers .
I remember the day we got our diagnosis of Angelman Syndrome ( Shea is deletion +). Shea was about 2 years old . The neurologist gave us copies of articles from an early ‘ 80s medical textbook , describing Angelman Syndrome . He told us that our son would never be able to walk , to talk or to function as our other children and that we might as well “ find a place for him ”. The doctor painted a very bleak picture of the future . After leaving the office , my husband and I sat together in our car ( as we cried ) wondering what to tell our families ; feeling quite hopeless . We knew Shea ’ s “ place ” would be with us , as long as we can take care of him . We decided that we would do everything in our power , provide every opportunity , for Shea to be all he can be . Our journey has not been trial free , but the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear .
I want to share some of the things we ’ ve learned along this journey : 1 . Always trust your intuition . No one knows your Angel ( s ) as well as you do . 2 . Never put a limit on your Angel ’ s abilities .
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