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‘They gave us hope’: Grandmother raising child born addicted grateful for support

Click here for the story featured in the Exeter News Letter – written by Lara Bricker

50 years of RMCC: Meet Jim Kaplan, one of first alumni

 

Click here for the story featured in Exeter News Letter – written by Lara Bricker

 

 

A Mother’s Day Message: “Diagnosis is not Destiny”….Cordelia’s Story.

 Elizabeth is a strong, articulate and well-informed advocate for early intervention. And she is a grateful mother who credits RMCC for creating a true partnership back in 1985 in which she felt deeply respected and her voice clearly heard. Elizabeth’s daughter Cordelia was born 15 weeks prematurely in Boston, weighing 1 pound, 9 ounces. Since that time, many life-changing advances in neonatal medicine have impacted and improved the care and prognosis for premature babies, but at the time, Elizabeth found herself in largely unchartered territory. She and Cordelia’s father Peter had to forge their own path forward. They turned to the Richie McFarland Children’s Center for help. 

“It was such an emotional roller coaster. We were so frightened. Cordelia was at risk for congestive heart failure, her lung status was problematic, and she was on a respirator in a Neonatal Intensive Care Unit (NICU) for many months. The standard milestones of infant development simply did not apply. I didn’t even know what the term ‘early intervention’ meant. I was referred to Richie McFarland Children’s Center and everything they did for Cordelia built a foundation of support and confirmed for me that my own instincts could be trusted.

The RMCC staff who were involved with Cordelia were so supportive, showing us such thoughtfulness, care and sensitivity. And they were creative! For example, Cordelia had eating problems, and sucking was difficult. Peggy Small-Porter, an OT at the time, modified a sippy cup by hand cutting a larger hole to make access easier, and showed us how to use a washcloth to gently rub around Cordelia’s mouth prior to feeding to stimulate her muscles. Along with Peggy and Sue Ford, another therapist who was so helpful was Pat McClean. She was the first person who used the term ‘brain plasticity.’ Neuroplasticity was not a very well-known concept in 1986 to say the least but the concept of brain rewiring is now documented. The critical importance of early intervention has been well researched and the sooner that babies and toddlers with potential and actual delays are identified, the better the long-term outcome can be developmentally.

As she grew, Cordelia was introduced to sign language and – with therapy to stimulate her muscle development – could hold her favorite doll. Our safe space was RMCC. They took such delight in her progress. They lived with the understanding that the parent knows their child best. They teach you how to advocate. They listen. They care.

The parents who started RMCC were truly visionary pioneers at a time when the concept of special education – and laws supporting it – had yet to be written. The founders ‘paid it forward’ and it meant that in 1986 when we brought Cordelia home from Boston, we were able to get the early supports she needed in our own community. While her medical needs continued to be addressed at Children’s Hospital, the local support of RMCC gave us the foundation as parents to know how to care and advocate for our child. The confidence instilled in us by the therapists and educators at RMCC let us know that we could be capable and insightful partners with the doctors we relied upon to help our daughter. We were not medical specialists or therapists by any means, but we were specialists in Cordelia, and that knowledge was critical as she grew and we continued to adapt to her needs. Our time with RMCC up until transition at age three gave us the foundation to be our daughter’s best advocates. As her mother, I was using those skills in different ways to support her until her final illness. Throughout her life, Cordelia valiantly struggled with health and other issues. She died on her 34th birthday in 2019.

RMCC is now burned in my brain in the most positive and grateful way. They are just there for you, being hopeful but also being realistic. I know firsthand that there is no way to guarantee outcomes: the future is unknown. But the angels at RMCC are meeting families at their most vulnerable point and instilling this simple message: diagnosis is not destiny.”

Interview and story by Judy Wilson