One Family's Journey: Medical Home and the Network of Supports It Offers Children and Youth with Special Healthcare Needs: Community Resources: Part Four

By Wood, Margie; Gretz, Sharon et al. | The Exceptional Parent, December 2007 | Go to article overview

One Family's Journey: Medical Home and the Network of Supports It Offers Children and Youth with Special Healthcare Needs: Community Resources: Part Four


Wood, Margie, Gretz, Sharon, Gatto, Molly, Walker, Deborah, MacDonald, Sarah, The Exceptional Parent


Amita had heard that you could get used to anything. She still was not sure. She had gotten used to some of the challenges that her daughter, Anjali, presented. They finally managed to get into a regular routine. The six months since Anjali's premature birth had been a blur of doctors, nurses, social workers, and other medical professionals. Amidst the medical chaos, Amita had one point of stability: Sunshine Pediatrics.

All of Anjali's care was coordinated through Sunshine Pediatrics. Amita adored Dr. Werner, Anjali's primary care physician. Even when Dr. Werner seemed frazzled and busy, the practice's care coordinator, Laura, was always available to answer Amita's questions. These days, Amita felt as though she were always asking questions.

Amita was glad to have those first few precarious months of Anjali's life behind her. Now she had more time to think and more time to worry. Amita knew that Anjali was a little behind in her development. Even though the expected developmental milestones had been adjusted for Anjali's early birth, Anjali was not doing all of the things she should be for her age. Amita also worried about other aspects of Anjali's care. There were so many specialists to see and so many insurance issues to sort out. If that was not enough, Amita worried about her career. She had planned to go back to work after Anjali was born, but she could not even think about working now.

[ILLUSTRATION OMITTED]

Thank goodness Amita's parents arrived from India! Amita's mother was so excited when Anjali was born. She insisted that everyone immediately call her Naniji, the Hindu word for grandmother, even though she had not even met Anjali yet. Her husband said he would wait to meet Anjali, and then he could be called Nanaji, the Hindu word for grandfather. Naniji and Nanaji had been visiting for one week now. Nanaji was still intimidated by Anjali's small size and feeding tubes, oxygen, and nasal canula. Naniji jumped into her role as grandmother feet first, eager to learn everything about her granddaughter. A few nights earlier, she and Nanaji even babysat Anjali so Amita and Samir could go out to dinner! That evening, Naniji marveled at Anjali as she rocked her to sleep, singing the Hindi "Lori"(lullaby), entitled, "Nanhi Pari ab sone chali," which means: "The little fairy is going to sleep."

Sunshine Pediatrics had become a source of comfort for Amita and Samir. They knew they could call anytime they had a question or Anjali needed something. Amita especially enjoyed the support of Cheryl, a parent partner at Sunshine Pediatrics. Cheryl was also the parent of a special child with special healthcare needs. She could relate to Amita as a parent, but she also had a role with Sunshine Pediatrics. Cheryl and a few other parents share the parent perspective of caring for a child with special healthcare needs with the pediatric staff to help make the office more supportive and the care more comprehensive. Their role was titled, "Parent Partners." Amita had already decided she would like to become a Parent Partner at Sunshine Pediatrics, just as soon as she felt less overwhelmed with Anjali's situation.

Amita glanced at the refrigerator. In the center of the door, she had secured a bright postcard from Sunshine Pediatrics. It was an invitation to the semi-annual resource night. Laura, the care coordinator, had called Amita before she could R.S.V.P. to see if she was coming to the event. Laura explained that twice a year Sunshine Pediatrics invited representatives of various community resources to come and share information about the services they could provide to children and youth with special healthcare needs and their families. There were several representatives attending that Laura felt would be especially helpful to Amita and Samir.

Amita and Samir were looking forward to the resource night. They both wanted to meet more parent partners, and Samir had some questions about their insurance plan. …

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