When Jacqueline Tafoya’s daughter Emma was diagnosed in utero with several medical complexities including clocal exstrophy (OEIS), she was nervous, afraid, and felt completely alone. Jacque and her husband were apprehensive and scared about what the future would hold for their baby girl.
Emma had a rough start, spending seventy-six days in the NICU where she experienced many medical complications. This was an incredibly stressful time for the family. When Emma was almost a year old, Jacque reached out to Raising Special Kids seeking support and guidance. She shares, “After a year or so, I let myself feel things again and no longer be the emotionless robot I had become. My anxiety and PTSD became real at this point. I felt like no one understood what I was going through until I was connected with Raising Special Kids.”
Because of the support and care, Jacque received from Raising Special Kids she was inspired to volunteer for the organization. “I became a mentor and finally found my place and my people. RSK provided me with a sense of community. I was able to help other parents, which also gave me a sense of self and purpose again. I love being a special needs stay-at-home Mom, but it is lonely.”
Jacque has been a parent leader for several years at Raising Special Kids and has been a tremendous source of support for other families as they have needed hope and help from a parent who understands what they are going through. Jacque is grateful for the chance to give back and help others. Jacque shares “Without RSK, I wouldn’t have been able to bounce back and be the fighting Mama Bear that I have become. The support I’ve been given and the friendships I have made provided me with a community that understands me. I no longer feel lost or alone. I have a family of parents just like me, and that feeling is truly priceless. Without Raising Special Kids, I don’t think I would be ok. Having a special needs parent tribe has made all of the difference in my life, and in my family’s lives. I no longer feel sad and alone, I feel supported and understood. We are bonded forever, and that is a powerful feeling!”