Changing Perspectives – Embracing Little Victories

Having a child with a rare diagnosis can often be isolating and overwhelming. Sometimes family or friends may not understand, and it can be stressful navigating everything that a child with special health care needs requires.

When Tricia Burke reached out to Raising Special Kids for guidance and support on her son’s feeding issues, she was grateful to be connected with a family support specialist who understood what she was going through. Tricia shares “We talked about the feeding and g-tube issues a bit, but mostly we discussed the challenges associated with having a medically complex child. It felt less isolating to know that, even though our children were different, I was not alone in having experienced tremendous challenges with my son. Beyond that, this connection was helpful to me because the family support specialist was open and expressed gratitude for her own experience. Until that point, I had been so focused on the challenge, struggle, and grief over his diagnosis. My family support specialist changed my perspective, taught me to try to embrace the little victories, and to recognize and value the beauty in our unique experience.”

Tricia also had a parent-to-parent connection through Raising Special Kids and found it especially comforting and supportive as she prepared to have her second child. Tricia worried about how she would balance her son’s needs along with a new baby and felt anxious about how her family would adjust to the change. Tricia was connected with a Parent Leader who provided much-needed emotional support, and advice from her own experience having a baby as well as a medically complex older child, and eased the fears Tricia was experiencing. She began looking forward to their sibling relationship rather than focusing on the challenges of meeting both of their needs.

Because of the support Tricia received, she was inspired to volunteer as a parent leader at Raising Special Kids, mentoring other parents as they travel along their own parenting journeys. Tricia is just beginning her parent leader experience and cannot wait to connect with other parents and to give back to an organization that has truly helped her and her family!

“Raising Special Kids has been a wonderful way for me to connect with other parents. I feel less isolated as a parent to my medically complex child and have been able to gain valuable perspective and insight from my parent connections. Their kindness, support, and encouragement have been authentic and valuable to me in my parenting journey and for that, I am truly grateful.”

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