Shining Star
Little Izaiah Carpenter has a special charisma. His mom, Jennifer, explains.
"Wherever we go, whether people know who he is or not, they want to see him and talk to him. We can be in a room with a dozen kids, and Izaiah is the one everyone wants to see."
After dealing with the shock that such an overwhelming list of disorders laid on her, Jennifer got immediately busy. First, she contacted the Carter Centers, an organization dealing exclusively with holoprosencephaly that links hospitals and health centers together around the country. They confirmed Izaiah's diagnosis through MRI and answered many of her questions.
Then she began perfecting the momma lion roar. With her baby's diagnosis of CVI (impairment of vision due to the brain's inability to receive images) she became an advocate, a role that parents of kids with special needs learn quickly.
"His first neurologist told us he was blind and just sent us home. I had to refer myself to a pediatric opthamologist and then I had to request vision therapy," she says.
She goes on, "He is not blind, he can track and make eye contact now! I was a lot less likely to speak up about things before Izaiah was born. My life was so easy, and I had no major worries to speak of. I had NO idea what some people go through and it gave me a whole new appreciation for special needs children and their parents."
Through Izaiah, Jennifer has discovered some important things about herself. She says, "I have learned that I am far stronger than I knew, that I have more patience than I thought I had, that I am a very independent person and that I can and will handle whatever I have to make sure he gets what he needs," she says.
"He has taught me to have a voice and speak up when I have a question or when he needs more than someone is willing to provide. He has also taught me what matters in life--it isn't the money you have or the possessions you have obtained, it is the little things that matter." She adds, " Izaiah has taught me to slow down and enjoy life and to NEVER take anything for granted."
Izaiah is doing well despite his global delays. At nearly two years of age he can prop sit, bear weight and take steps with help. He feeds himself and says "mom-mom-mom" and "hi". Pretty amazing progress for a little boy whose parents were told when he was born that his brain was "not viable for survival."
In October 2003 Izaiah will become a big brother. Jennifer is pregnant and the baby looks just fine, according to ultrasound. Baby number two is going to have a lot of keeping up to do with Izaiah around. He's one little boy who is out to surprise everyone!
Written by Carolyn Murray
Click here to read other profiles
