For the longest time after Ella started having her seizures, leaving the house gave me more anxiety than I have ever felt before. It honestly was crippling. I felt that if I stayed home and something happened the paramedics knew us and would get to our house quickly. Being away brought too many variables, so I didn’t take Ella anywhere. She only went to school with her nurse and came right back home to us.

Was I thinking logically? Probably not but having been through what we had been through logic was a not factor in any of my decision making. COVID helped, and for a long time was a good enough excuse to not go anywhere. Steve was working like crazy so family outings were scarce. I fell into a very comfortable pattern and life seemed “safe”.

Once restrictions lifted and Ella was stable and seizure free we started taking little trips out. By then I had a walking toddler to chase and tons of extra meds and equipment to bring for Ella, just in case. Loading the cars, bags, and equipment was time consuming, and by the time we left the house, I was exhausted. Taking Jack and Ella out alone was a risk and one I chose not to take often. It didn’t feel safe for Jack if Ella had a medical emergency and needed my full attention and if I needed to chase Jack leaving Ella wasn’t an option.

Last summer, a year after her intubation, Steve and I decided to take the boys on a trip to the beach. The car ride would have been way too long for Ella and without an extra set of hands the beach would have been too much for us all. Instead, she stayed home with Steve’s mom and had the time of her life. It felt wrong having fun and making memories without her, even though I knew she was being spoiled rotten at home. It was hardly a family vacation with one of us missing and I felt mom guilt the entire time I was there.

As the seasons changed and more help was available Ella started to venture out more. We did salon dates, lunch dates, shopping dates, and lots of trips to see family and friends. Ella was born to be social and loves interacting with the people around her. She thrives anytime we go out and people wanted to see her.

It’s been almost two years, a new diagnosis, and we have all grown and learned so much. We know when Ella is having rough days and what to look for as far as seizure activity. For the most part, she has been stable and we truly owe that to the team of doctors that is incredibly hands-on with her care. On those days she isn’t feeling her best, we give her the time to rest and let her body reset.

We have missed more parties, events, and outings than I can even count and most people don’t quite understand that hopping in the car with Ella isn’t as easy as hopping in the car with the boys. The what-ifs always have to be considered and planning is essential. Because of this, we have grown apart from friends we were once close to but have also formed some amazing new relationships.

Last weekend, for the first time, we took Ella down to the Bronx to see the Yankees play. It was a fundraiser for the foundation and it only felt fitting that she be part of the experience. The employees at Yankee Stadium could not have been any more accommodating and we had such a wonderful time. I look forward to continuing to venture out of my comfort zone and giving Ella more amazing opportunities to see the world and live her best life. Raising a special needs child is scary af but with the right support and mindset, it can be more beautiful than anything you ever imagined.

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