About Me

United States
My fiance (Joe) and I (Caytie) just delivered our third child. We have a son named Dustin, age 4, a daughter named Aryanna, age 1, and our new little bundle's name is Mira, and she has been diagnosed with spina bifida. She has a myelomeningocele, a chiari malformation, hydrocephalus, and a club foot. She had surgery the day after she was born on her myelomeningocele, and surgery when she was 6 days old to place a shunt in her brain. She is facing more surgeries, a lifetime of recovery and monitoring, and we will all be facing the journey of spina bifida. Prayers and kind thoughts are always welcome, and if our story can help others, that would mean the world to us. Spina bifida is a fairly common birth defect, but there's nothing normal about facing potential danger with your child. So this is our story, the journey of spina bifida, as we live it.

Wednesday, January 30, 2013

Letting It Sink In

     Once the OB left, Joe and I took a moment, and then quite a few more, to gather ourselves, support each other, and tell each other it will be okay. We held each other, talked about the wonderful life we intend on giving her, prepared to leave, and then stopped and held each other some more. We repeated this a few times, and finally left the room to obtain the information from the secretary about the specialists we would be meeting with in Pittsburgh. She informed me they would be calling me to set up our appointment.
     As we were leaving the hospital we started making phone calls to family and friends to inform them of the news, which was a process that would last for the next couple of days. Each time I made that phone call, it never got easier to say the words out loud. I spent the rest of that day on the phone with loved ones, secretaries from Pittsburgh, and health insurance representatives.
     I kept thinking that while I was on the phone making professional phone calls, I would be able to control my emotions, but as soon as I got to the word "baby" or "Spina Bifida" I broke down every time. It is an uncomfortable situation, to be experiencing your most vulnerable moments while on the phone with a stranger who is just trying to do their job. To repeatedly sob to someone you will probably never meet and have never met before about the most life changing event you have ever endured. No part of me blames them for being awkward, or not knowing what to say; after all, what do you say?
     What seemed like an endless list of phone calls finally wrapped up once business hours for the day ended. This is when I started hitting the Internet to do research and find out as much as I possibly could before the Pittsburgh appointment, which was now scheduled for Wednesday, February 6th, 2013.

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