Laying in bed almost three years ago, trying to get the energy to get up, I just couldn't get over how tired I was. Something wasn't right. Well two little pink lines later and our world changed forever!
Emma Hart Gillaspie was born on October 24th, 2016 with the most amazing full head of hair. She was the most beautiful thing I had ever seen. Nothing could have prepared me for the joy I would feel becoming a Mom. But life threw us a brutal curve ball, and three months into our parenting journey we noticed some strange “crunching” movements and episodes where she would hold her breath and turn pale. The pediatrician almost sent us home with a diagnosis of reflux until they watched Emma stop breathing in their office. That's when the vibe in the room became tense and we were rushed via ambulance to the Children's Hospital of Colorado.
Throughout all this I was convinced everything was going to be okay. It never crossed my mind that something was seriously wrong, and had never considered that these were seizures. The next morning when the doctor came in to check on us, I overheard him mention to the nurse that the EEG was concerning. Sure enough…a group of neurologists walked into our room, sat down with the saddest faces and delivered our first Diagnosis Day…Infantile Spasms. “Little Seizures, Big Consequences”. They don’t look like much but they cause a lot of destruction to a little growing brain. We started treatment immediately and were reassured when it initially worked. But Emma relapsed quickly. Then another medicine helped…then another relapse. And on and on. Each medicine we tried had worse and worse side effects. The steroids we pumped into her little body made her so swollen that liquid oozed from her stretched skin. Her immune system took such a beating that she ended up with pneumonia that took her a two-month hospitalization to recover from. And we still have yet to meet a milestone. But from these hardships came a strength and love that I never knew existed. Before Emma I didn’t realize how much weight I put on things that mattered so little. I didn’t know how much excitement I would feel at the tiniest bits of progress. I didn’t know what it meant to fight until I watched her fighting for her life multiple times. Emma still struggles. Her life is hard. But she is SO LOVED and I know she can feel that.
A year and a half into our journey, and after extensive genetic testing all came back normal, we were excited to start growing our family.
Abby Elizabeth was born October 16th, 2018. Almost two years to the day after Emma. It was another love at first sight moment. My heart grew with love in a way I didn't believe was possible. At 6 weeks old, we saw an all too familiar movement that made our hearts jump. Surely these were just typical baby movements. All babies crunch their body in half involuntarily, right? Even admitting our concern and saying the words out loud took every ounce of bravery I could muster. I wanted to look the other way, pretend it wasn’t happening, make it go away. It was impossible for this to happen a second time! But an ER visit and overnight EEG confirmed our worst fears. Lightning had struck twice. Abby was diagnosed with Infantile Spasms…our second diagnosis day. Our experience with Emma taught us a lot, and there are so many things I would go back and change about the treatment protocol the doctors used. I believe its Emma's gift to her little sister that we learned how to better and more aggressively treat and therefore Abby has been less affected.
I thought a fire had been lit inside me after Emma was diagnosed, but having two daughters go through this turned that little flame into a full blaze. I've been full steam ahead ever since trying my best to navigate the world of genetics and ensure we do everything possible to give these precious sisters the best life possible.
Lightning may have struck twice for our family, but LOVE conquers all!
Emma and Abby are FIGHTERS! Now its our turn to fight for them.