This is not our first rodeo…we’ve been in this boat before, and will be again. Many people ask if it gets easier. The answer? Yes and no. A fellow mom said something along the lines of, “The known is so much worse than the unknown.” When Callie Anne had her first skull surgery at 9 months old, it was hard. Likely, crazy hard, on all of us. We had seen post op pictures and talked to other families, but until you’ve lived it, you really don’t know what you’re getting into. This time, we know. We know too much. On one hand, it will probably be good in that we won’t be shocked at how awful the first 2 or 3 days post op will be. On the other hand, we KNOW how awful the first 2 or 3 days post op will be.
I’ve been working up a new blog post in my mind for a while, but things just kept happening; like CA getting the flu on Monday and me going into full blown meltdown mode at work. So, I kept thinking, “When things calm down and we have a better picture of what’s going on, I can write about it.” Well, that’s kind of a joke because things will never truly calm down. So…when thinking about this surgery coming up, this is what I know:
I know that in 5 days, we will hand our baby off for the 7th time to a surgeon. I know that we will sit in a waiting room and make idle chit chat for 5+ hours while skilled craniofacial and neurosurgeons cut our daughter’s head open. I know that her skull will be opened up, her skin pulled down to allow access to the forehead and nose. I know that her skull will be taken apart and put back together in a way that will add room for her precious brain to grow and develop properly.
I know, unfortunately, that I won’t be the nicest person to be around that day. In the face of severe stress, I struggle to hold my composure. I lash out at my loved ones and tend to be easily irritated. Each time, I try to do better. I know I will try again next week.
I know that there are risks. Countless risks to this surgery. And I know that David and I have a level of faith that allows us not to dwell on the risks, but to trust the capable hands of her surgeons. After all, “Worrying does not empty tomorrow of its troubles. It empties today of its strength. ” – Corrie ten Boom
I know that we will be reunited with Callie Anne in the PICU Tuesday evening and she will look extremely different that when we handed her off to nurse Cindy. And I know that will be hard to swallow, but it will be ok.
I know that on day 2 post op, her eyes will be swollen shut. She will be in pain, scared, and pretty ticked off. Last time, on this day, I sat in a ball and cried while my mom and husband took care of her. This time, I will do better. I have to.
I know that the swelling will take weeks to completely go down and it won’t be until then that we will know how our sweet girl’s appearance will be affected by this necessary surgery. I know that it will be hard, just as all the others have been, to see her change so drastically.
I know that my family will be there to help every step of the way. I know that my husband will, once again, turn into the rock on which I will lean. He will go into his super daddy mode and make me fall in love with him all over again. I know that my mom, who is simply an extension of myself in these times, will seamlessly step in when I need her.
I know that David and my parents will halfheartedly attempt to get me to leave the hospital and get some rest. They try it every time. It never works and they are starting to just let me be my stubborn self. I know that I will not leave my baby’s side. It will be long, sleepless nights for both of us, but I know that when her eyes open, I will be the first person she sees.
I know that we will not have the burden of the expense of travel costs or booking fees on this trip because our amazing friends and family have held fundraisers and made donations that will allow us to do what we need to do. When the bills start coming in, we will be ok.
As if all this wasn’t enough, here are a few more things I know:
While there are risks, Callie Anne will be wrapped in the grace of God and I trust that she will be just fine.
While we will be emotionally and physically exhausted, somehow we will find the strength we need to be there for CA. We always do.
While the week after surgery will be more miserable than I can ever put into words, it will only be a week and will soon be just a memory.
While Callie Anne will be more aware of what is happening this time than ever before, she also has favorite things now that will serve as comfort. (even though we may want to throw Mickey Mouse out the window by next weekend)
While only our parents (CA’s grandparents) will be with us in Dallas, we know we will have thousands of supporters around the world praying for our baby girl and watching for updates.
While I’m already exhausted from spending weeks getting the financial pieces in place for this surgery (and let me tell you insurance is getting harder and harder to deal with), from this week of dealing with CA being sick and not even knowing if she would be able to have the surgery, and from the emotional toll of preparing myself for another big physical change…I know that we will get through this.
While it is all scary and stressful for us and extremely painful for her, after this surgery Callie Anne’s brain will have more room to grow and she will continue to amaze us with her development and successes!
Surgery is scheduled for 1:00pm on Tuesday. I will update the Facebook group, Prayers for Callie Anne, throughout the day.