Easter Seals Capper Foundation Donor Appreciation Video

"Motherhood: All love begins and ends there." I'd like to share the story of a little girl named Jocelyn, and her resolute mother, Angie, whose unending love, persistent determination and positive nature has touched each of our lives. I am sure this story, in Angie's own words, will capture your heart, too.
"I am a nurse and my husband, Justin, is a helicopter pilot currently on deployment with the Kansas Army National Guard. We were excited to learn we were going to be parents and I was in the best physical shape of my life.
My baby never moved vigorously and at twenty weeks I called my doctor because something didn't feel right. My blood pressure was creeping up and I began retaining fluid. Suddenly at twenty-four weeks, everything went black in one eye, which I reported to my doctor. We agreed to carefully monitor my health as I continued to work. Four weeks later, I became very concerned as I hadn't felt my baby move for close to 24 hours despite my attempts at varying my activities every thirty minutes, hoping and praying for a response. My doctor ran tests and I learned the only way the doctor knew Jocelyn was still alive was seeing her tiny heart fluttering. An emergency C-section followed and our beautiful baby, Jocelyn, was born 12 weeks prematurely, weighing just 2 pounds, 3 ounces.
Our hospital had no neonatal intensive care unit (NICU) so our little girl was transferred ninety miles away -- Justin and I did get to see her before she left, but I needed to surgically recover before I could be with her. Two days later, when we arrived, I told Justin, 'Mothers just know...something is wrong with Jocelyn's head.' Tests revealed fluid on her brain so twice each week, doctors drained the fluid until she was strong enough to have a shunt inserted, allowing fluid to drain into her abdomen. Her pediatrician remarked, 'She's a fighter!'
Jocelyn spent two months in the NICU and one month in special care. Justin continued working and would join us whenever he could. I was one of those moms who they couldn't get out of the NICU, but I knew that Jocelyn needed me! Jocelyn was diagnosed with quadriplegic spastic cerebral palsy, chronic lung disease,
reflux, which required a feeding tube, difficulty with communication and vision impairments for which she recently had surgery.
I believe God gives you children and they are your legacy. I sometimes think, 'What do I want my legacy to be?' I don't care what Jocelyn's diagnosis is, it doesn't define who she is or who she is going to be. And with the help of Easter Seals Capper Foundation,
she is making miraculous progress!
Jocelyn receives physical therapy with Capper pediatric physical therapist, Kim Coker. Together, Kim, Jocelyn and I are working to strengthen Jocelyn's abdominal muscles so she can begin to sit by herself. Like most little girls, Jocelyn loves looking at herself in a
mirror and she is very social. We use a mirror in therapy to help Jocelyn crawl, chasing her image in the mirror. After hearing me exclaim, 'You Did It!,' Jocelyn squealed with delight, 'I Did It!'
Jocelyn play with toys. She has always been interested in people's faces; I think because of her vision problems, she couldn't focus on toys so never really showed an interest. Now we are working on having her grasp and focus on toys. I don't think people realize that for some children, play skills need to be taught. This is so important and our goal is to help Jocelyn become independent -- play, drink from a straw and cup, and ultimately feed herself. She just had thirty Botox injections to reduce the spasticity in her muscles. I noticed this has improved Jocelyn's vocal sounds. We are teamed with pediatric speech pathologist, Julie Erb, to develop a communication system so that she can be understood, including sign language and perhaps some technology.
I have never seen someone so loving -- she is just smiling all the time!
My husband, Justin and I agree that our lives have always been
challenging and believe those trials prepare you that much more for life. We have a good communication system even though he is so far away. And I have always been a spiritual believer. With my husband gone and family far away, when I do have those occasional melancholy moments, it seems that's when Jocelyn will do something new! I believe it is God's way of saying, 'Job well done.'
We are so very thankful for the loving and caring staff at Easter Seals Capper Foundation. I don't know that I've ever been in another place where I've gotten this feeling. Our shared goal is to always give Jocelyn the independence, confidence and chance to be the best that she can be and it's so important, as a parent of a child with special needs, to know that you have people in positions that are willing to give so much. My husband and I and Jocelyn truly appreciate you!" -as told by Angela Powers
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