As Havens surgery date inches closer and closer so does my lack of sleep and the never ceasing buzz in my mind of thoughts and questions. So many keep saying that Havens going to be a different child after this, and as hopeful as I am for that it also terrifies me. I love my child, and as hard as life is somedays I love THIS child. This stubborn, strong willed, sometimes pain in the ass beautiful child. As hopeful as I am and everyone keeps convincing me to be, I am also sad. I’m sad that I may loose my child as I know her. I’m sad that so many people are looking forward to this “new child” I’m just so, so sad. What if she’s worse? That’s easily my biggest fear besides complications from such a scary surgery. I think guilt, blame, and second guessing would consume me at that point. It brings me to tears to even consider. What if nothing changes? 20% of surgeries don’t take and show no improvement, these are usually unsuccessful surgeries done by inexperienced surgeons though, our neurosurgeons words verbatim. What if we still have our same, doesn’t fit in the worlds ridiculous Box Haven? But what if that always smiling, happy baby that I once knew returns? And now I’m balling. Haven had such a fast down hill regression that it is hard to remember the days she wasn’t like this. She used to be SO happy. So full of life and love. Her first word was “hiiiiiiiii” she was seriously so sweet, she would just sit on my grandmas lap when she was so sick for hours. Everyone lit up when they saw her. Then one day it all started to change, her doctors guess that around that time she hit a growth spurt and her pain began. Unable to tell us and having to live with constant pain sent her into a downward spiral. It breaks my heart to think of the pain and struggles she’s had in such a short time.
I really have no idea what the future holds, it’s crazy how the unknown is seemingly always lurking ahead. What I do know is I am going to cherish every single day with Haven that we have until her surgery, and Mia too obviously. I am going to try to embrace the hard days even more than usual and celebrate all the good ones. I’m going to watch her sleep, take way too many pictures, and squeeze as many hours and fun into the day as we can. I’m going to fully enjoy my Haven I have now and the life we live while preparing for whatever Haven will be ahead.
Some details about the surgery and recovery because many have asked. The surgery itself is about 3 hours, due to the other two procedures before it will be about 5-6 hours total. Haven will be in the Pediatric ICU the first couple of days until she is stable and her pain is well managed, no visitors are allowed there. Then they will move her to the normal unit, where she will be allowed visitors as long as she’s feeling up to it. Havens full recovery is estimated at 2 months. I will be off work with her the first month (unpaid, yay thanks Applebees for my 8 loyal years) they said be prepared for good and bad days. We have to be very careful of her incision, infection, and keeping it clean. She’s such a wild one this will be the hardest part. She will probably get worse before she gets better. We are hoping to have her happy and healed and ready for life in our new normal just in time to start pre-k. As always thanks for the thoughts, prayers, and love.