We Were Really Shocked and Didn’t Know What to Do

The night their lives changed course, Brittany Miller and her husband Ryan were settling into life with three daughters, having welcomed tiny Brooke just five weeks earlier. During one of their first family outings with their baby, Brooke began having seizures. Once at the hospital, Brittany and Ryan quickly found themselves in an emergency consultation with the neurologist on-call. That neurologist diagnosed Brooke with Aicardi syndrome, an extremely rare genetic disorder.

Recalling the two weeks they spent in the hospital with Brooke following her diagnosis Brittany shared, “I had 5 year old, a 2½-year-old and a baby with all these needs. We were really shocked and didn’t know what to do.” Among the information Brittany was provided by her hospital social worker was a flier for Raising Special Kids, but for her, it was just not the right time to connect. “Her first year was very scary. We weren’t sure she was going to make it. She was having hundreds of seizures a day. It was just very stressful!”

A couple of years later, Brittany attended a Raising Special Kids presentation on transitioning from AzEIP to preschool. She was impressed with the quality of the information she received. “Even though it’s only preschool, Brooke has a lot going on! Raising Special Kids gave me the right language I needed to advocate for her. It made me feel empowered when I went to the IEP meeting.”

Once Brooke was in preschool, Brittany began connecting with other moms of children with special needs on Facebook and joined the family advisory group at the hospital where Brooke receives care. Brittany attended an IEP training at Raising Special Kids with some of the moms from her Facebook group and once again, she was impressed. Soon, Brittany became a Parent Leader at Raising Special Kids, helping other families whose children have diagnoses similar to Aicardi syndrome. “I still connect with a lot of the parents I’ve spoken with as a Parent Leader. It’s so interesting how my life has turned out because I have a child with a disability. I’ve met so many people I would never have met. It’s pretty cool.”

Often, people tell Brittany, “I don’t know how you do it.” Brittany just replies, “You would do it too because you love your kids.” Brittany adds, “I definitely have my own anxiety and stresses dealing with life but we still try to do the busy happy family life. We just have these medical things that come up. We’ve come a long way as a family. My girls Juliette and Audrey are wonderful with Brooke. They’ve learned a lot being special needs siblings. It has changed us in ways that are good. We know we won’t have Brooke forever so we cherish the time we do have with her.

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