In Good Company

It's officially surgery week. The thing that once seemed so far away has crept up on us - the reality of it all now facing us head on. I feel like I'm a wide-eyed 7 year old again riding Big Thunder Mountain. The start of the ride isn't very threatening. I kind of knew what was waiting just down the rail but I was distracted, my attention held captive. The next thing I knew, we were slowly climbing up a steep slope. That's where I am today. I feel like I am once again in the dark, climbing slowly, anxiously wondering when I will drop. Although we have known about this particular condition and surgery for months, we have been distracted by the busyness of each day. Some being the typical care required for babies and some very atypical- like unplanned surgeries. Typical issues like feeding woes, fussiness, and sleeplessness tend to be amplified by Caroline's many health concerns. Still, our life is pretty normal, or maybe we are starting to change our definition of normal.

Friday was one of those days where you feel like you have been on a seemingly eternal roller coaster ride. I was still feeling a high from the day before. Caroline and I had coffee with another mama and her baby who are also on this craniosynostosis roller coaster. As much as I hate it for these sweet new friends, I am also so thankful to be sharing the ride with them. Maybe Caroline enjoyed the outing more than she showed because the next day was a great one for her. She was taking her whole bottle at each feeding without any choking which is a huge victory for her! Then I checked the mail. Josh can tell you I rarely check the mail. I don't know why, I think because I don't like surprises- particularly in the form of bills. Anyway, I decided I would venture to the mailbox and found two pleasant surprises. Well, they weren't totally surprising since I ordered them but you know what I mean. One was a care package from an organization called Cranio Care Bears. This organization was started by two "cranio moms" to provide support to other families journeying through the diagnosis and treatment of craniosynostosis. In addition to answering questions and sharing encouraging success stories, these wonderful ladies also put together care packages for babies and their parents. They try to include items they know will be helpful before, during, and after surgery. The anticipation of opening the package felt a little like an early Christmas. Just thinking about the families who donated items that were carefully put together by these "cranio moms" made me so grateful for those who have made it to "the other side." So what was inside our package? Well, Caroline received new pj's, a stuffed animal, fuzzy blanket, pacifier, and a cd of lullabies and prayers. Mama and Daddy also got some goodies including travel-sized toiletries, snacks, fuzzy socks (it's freezing in those hospital rooms), and a prayer chain filled with verses and words of encouragement.

Thank you, Cranio Care Bears!

Our next surprise came from an organization I encountered through Cranio Care Bears. A "cranio mom" started Cranio Angel Network. Her "cranio baby" was born with the same type of craniosynostosis as Caroline- which is not a very common type- so of course I have enjoyed reading about their journey. Anyway, she makes headbands and pirate hats for babies that are designed to help conceal surgery scars. Here is Miss Caroline sporting her new accessory.

See the pillow? I didn't even notice it until after I took the picture. A quote from one of my heroes, Corrie Ten Boom.- and such an important reminder for this ride.

Friday was a day full of emotions. I had knots in my stomach thinking about the upcoming week. What would the next Friday be like? At the same time, I also felt gratitude at being a part of this "cranio community." Even though we are only starting this part of the ride, we have assurance that we will eventually be on the other side. This roller coaster will end and as we are getting off, I hope we can encourage those just boarding the ride.