Kara and Jim Swierz’s daughter Zoey was an easy baby to adore with her big blue eyes, her cherubic facial features, and blond hair that shone like the sun. It didn’t take long for Kara and Jim to recognize that her muscle tone was low and that she had limited head control and gross motor delays. By the age of 10 months, Zoey had been to several specialists. With every new test came additional clues into the root cause of Zoey’s symptoms. Some information was insignificant and some was devastating and difficult to hear. Kara shared, “We are on a long curvy path to determine the cause of her global delays, short stature and hypotonia. We have a lot of support in the medical world but our adventure continues as we keep searching for a true diagnosis for Zoey.”
While preparing to move back to Arizona from New Hampshire where the family had moved shortly after Zoey’s birth, Kara came across the Raising Special Kids website. She recalled her first conversation with Raising Special Kids, “I immediately connected with a gal who provided me with recommendations and resources to prepare for the impact that moving from out of state would have on my daughter. She has made a lasting impact on our family. I still call on her for guidance, to shed some tears, and above all, to have a good laugh.”
Once they arrived in Arizona, Kara quickly faced challenges with Zoey’s out-of-state IEP and getting her approved for the Arizona Long Term Care System. She shared, “I was uneducated and quite overwhelmed.” Throughout the entire process, Raising Special Kids was there for her. “I was given websites and books to research, seminars and webinars to attend, advice on how to organize documentation and the tools I needed to effectively advocate for my daughter. Raising Special Kids helped me find my voice.”
Kara also talked about the positive support she received from Raising Special Kids when she has felt frustrated, desperate or isolated, “Raising Special Kids support comes without judgment or criticism but instead, with a soft voice of encouragement and inspiration. Even when I have made mistakes, I am welcomed with grace and guidance.” She appreciates that the people who work at Raising Special Kids also have family members with disabilities, “They have their own unique perspective on challenging situations. Raising Special Kids can empathize and get it. Raising Special Kids has helped Kara find humor at times of great sadness or frustration. “I think laughter is the greatest medicine and goes a long way to help me persevere.”
Persevere she has. Kara is now a Raising Special Kids Parent Leader mentoring other parents and participating on parent panels. “As a mom, I feel my voice is the greatest when I am advocating for Zoey. It is an honor I will never outgrow.”
Though she says it has been a tough year, Kara has found that moving to Arizona has been a blessing for the entire family. “We have come a long way and though the road has been long and not every day has it been paved with roses, I now know I have the strength, connections and resources to endure.”