Today we had a neurosurgery follow-up just to be sure everything is still well with Marley's shunt. Vincent was miraculously well-behaved during the almost hour long time that we sat in the waiting room!! There was an 8-year-old little boy there to keep him company. People go to neurosurgery for all sorts of reasons, and congenital hydrocephalus was not one of those reasons that I would assume the 8-year-old was there for, so when I started talking to his mother and she told me he had hydrocephalus discovered at 16 weeks gestation, I was a little surprised!
When I walked up to the seating area, this little boy was reading a children's book aloud. Amazing. I got to talk to his mother for a little over an hour, and learned more about their experiences, including the onset of epilepsy. When I asked her how old he was when that happened, she told me, "You don't want to know," considering it onset close to the age Marley is now. If it does happen to Marley, I will just do my best to handle it with as much grace as my friends have shown me, with unwavering faith. Until then, I'll (do my best) to stick with some of the best advice I've ever been given as a child: "Don't worry about it until it happens."
Anxiety is a tricky thing. I might sound crazy, but I feel like I'm constantly at war with myself in trying to control my thoughts and not let all of the "what ifs" creep in and destroy my day. I'm truly doing my best to take control of my own mind and choose to be happy, whether my body feels like it wants to be or not. This really has nothing to do with what's going on in my life, because I really have too much to be thankful for to let anything get me down. I know it's possible to do and I will!
The actual appointment went great. Marley has been really bashful to people she doesn't recognize straight away, and usually buries her head into my chest, but she reached right out to her doctor. I thought it was so sweet! The relationship with our neuro has changed quite a bit. As he compared Marley's MRI from December to her latest CT scan last month, he said "This is a drastic improvement. I'd say she has six months to a year for more brain growth until we need to turn the flow on her shunt down."
What wonderful news, all the way around! We won't need to be seen again (hopefully!) for three more months. He even gave Vincent a toy car when we left... how sweet!
I am overflowing with thankfulness for how the last 11 months have played out. It almost doesn't seem like reality. I don't want anyone to think I'm skipping along, rosy cheeks and all smiles as if I'm oblivious to some of the experiences others are facing. I'm praying for you and your little ones every day, and I wish I could take it all away from them myself, if only I could.