The way I consumed information started to change. I joined a few Facebook groups for craniosynostosis searching for comfort from others who had gone through the same experience as us, and yearning for the reassurance of positive outcomes. While I didn’t actively participate in these groups at first, I did constantly read stories, feedback, suggestions as much as I could. Real stories, real outcomes, real successes. It was here that I learned of an amazing organization, Cranio Care Bears [please check them out at CranioCareBears.org] and donate if you can!
Cranio Care Bears is an organization started by two mothers of cranio children. They send out care package donations to children who are scheduled for cranio surgery. When I first heard about this organization and their packages, I thought it was amazing. Little did I know that the one of the founders would later become one of my strongest sources of strength during Taryn’s surgery. More to come on that later….
Once we had our date, I signed up to receive Taryn’s care package online. It was the one positive thing I looked forward to in this journey associated with her upcoming surgery.
Days passed by one by one as we neared our December date. One of the fears we rarely express out loud is the fear of death. Ultimately, I would be lying if I said I didn’t worry about that potential outcome. It plagued my thoughts all the time leading up to surgery.
I scheduled family pictures, yes, because we were past due for our annual family picture session. But also, because I knew I wanted pictures of the entire family together. What if something catastrophic did occur? I wanted to be able to remember the joy we all had together for years to come in addition to the memories in my mind. Doesn’t that sound morbid in some ways? It’s hard even sharing this now and being so brutally honest about it. It is the deep down darkest fear, we don’t even dare to say out loud. I was constantly telling myself, “Jessica, your fear is irrational. These doctors do this all the time. Don’t think such horrible thoughts.” But they haunted me constantly, they were real, and I was scared, no matter how are I tried to pretend I wasn’t.
I received a call the first week in November, just over a week before our pre-op (remember the pre-op was set 1 month before the actual operation). Children’s had a cancellation and they wanted to know if we wanted to move Taryn’s surgery up to next week, November 18, the day directly following the pre-op. When I received the call I politely told the scheduler I would consult with my husband and return the call. In my mind, I thought there is no way we are moving this up to next week. I’m not ready. Not at all.
I called George, and his quick response was an emphatic “Yes, let’s get it over with! We’ll be home before Thanksgiving if all goes well, and everyone will have a more enjoyable Christmas. Think of all we’ll have to be thankful for. This will all be behind us. Let’s do it.” Instantly, I filled with tears. ….all this waiting, and I wasn’t ready. I called my mom, my dad, my boss… anyone I could think of who might tell me that moving the surgery up wouldn’t be a good idea. Everyone agreed with George, and I knew deep down inside, this was the right thing to do. So, after a long cry, I called the scheduler back and confirmed November the 18th.
Everything did easily fall into place in terms of time off of work, and planning. However, I was honestly upset that I wouldn’t receive my Cranio Care Bear package in time for surgery. It may seem like a silly thing to cry over, but at this point everything made me cry…. That night I received a Facebook message from Shelby, one of the founders at Cranio Care Bears, that looking back now, clearly was the doing of a higher power putting her, an angel, into my life.