{"id":222298,"date":"2020-04-26T11:54:04","date_gmt":"2020-04-26T16:54:04","guid":{"rendered":"https:\/\/www.liveaction.org\/news\/?p=222298"},"modified":"2020-04-23T22:42:38","modified_gmt":"2020-04-24T03:42:38","slug":"special-needs-advice-parents","status":"publish","type":"post","link":"https:\/\/archive.liveaction.org\/news\/special-needs-advice-parents\/","title":{"rendered":"A special needs mom’s advice for other parents: ‘Embrace the present moment’"},"content":{"rendered":"
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Kathryn Casey of California is no stranger to suffering. The mother of five living children, she has experienced several miscarriages, as well as the stillbirth of a baby girl with anencephaly. When an ultrasound during her pregnancy with her now four-year-old son Peter showed a cleft lip and palate, she and her husband knew that corrective surgery would be required, but had no idea that that would be only the tip of the iceberg. <\/p>\n

At two months of age, Peter was hospitalized for failure to thrive. Casey recalled in an interview with Live Action News that he was actually below his birth weight when he was admitted. Doctors were puzzled when it eventually became clear that Peter’s body was not properly absorbing nutrients. After significant testing, the Caseys finally received a diagnosis. Peter has an extremely rare genetic condition called SPINT 2.<\/p>\n

In his first year and a half of life, he was hospitalized sometimes “every other weekend” for one serious, even life-threatening issue after the other. Now, it’s been over a year since Peter was in the hospital. Peter requires a specialized IV catheter for IV nutrition that runs 14 hours a day, and is created by a specialty pharmacy that mails weekly batches to the Casey house.\u00a0According to Casey, life is “stable, but never secure.” She also has suggestions for parents facing a new prenatal or postnatal diagnosis, as well as living and loving well when a child has special needs.<\/p>\n

READ: School paraprofessional adopts student with special needs: \u2018We are better because of him\u2019<\/a><\/strong><\/em><\/p>\n

Remembering her emotions after her daughter’s anencephaly diagnosis and Peter’s ultrasound, Casey stressed the importance of parents being honest about how you feel. “As pro-lifers, we so emphasize the beauty and dignity of every life that we may skip over the real loss that comes with a prenatal diagnosis,” she said. “Parents can feel self-imposed suffering because of ‘shoulds,’ but it’s important to acknowledge what you’re feeling and to work through the tasks of grief. Gradually, you learn to acknowledge that your child’s life may look radically different from what you thought it should, and to let go of your expectations.” <\/p>\n