I had always been a woman of faith - especially when things were down. If my kids were sick, I always felt they would recover ok.. and they did. If we were about to overdraw our account and I was worried about bills, I would just have faith and somehow, a random check from some random music gig I'd done would "show up" in the mail to cover us until the next payday. After a few days of Meagan's diagnosis sinking in... I honestly had this strange "peace" that came about me and I just felt like everything was going to be ok.
I will never forget after Googling "congenital hydrocephalus" the feeling I had in the pit of my stomach. I decided to do a little more ' in depth' research on the diagnosis. I found a website called www.fetalhydrocephalus.com written by another Hydro mom along with doctors. For the first time on this journey, after reading through her site, I remember having peace of mind. Michelle's son, Owen, also had congenital Hydrocephalus. She, too, found the "Google" information scary and put her head together with several doctors to write this site for future Hydro parents, like myself. Her website covered absolutely everything - from intitial diagnoses, to possible complications from the condition, to equipment or things we may need for Meagan down the road, to anything and everything a Hydro parent could possibly want to know. Among the most valuable pieces of information was the link about the stem cell infusions Duke University was doing for Hydro kids. Michelle is the very reason Meagan ended up accepted into the Duke program and is able to receive these valuable cells. Without Michelle's site, we may have never learned about this new hope for children with Hydrocephalus.
I decided to search among baby websites as well and see if there were any other personal stories out there. My search brought me to a website where they had several message boards on a variety of topics. I remember typing in "hydrocephalus" and holding my breath - praying a message board would come up with the subject I was looking for...and sure enough, one did. I clicked on it, and brought up the page. I decided to leave a message and see if anyone would answer. In less than a day, a woman named Amy messaged me back. She was the mom of Parker, a little girl also with Hydro. She talked to me right off the bat as if I were family. She told me of her story, guided me to her family blog, and gave me a lot of great information about Meagan's condition. She also was one of the first people who gave me great hope as a mom. She was one of the first people that made it personal.
Amy also sparked an idea in my head - she had a blog. I wondered how many other Hydro families also had a blog? I started to google fervently and searched for hydrocephalus blogs, blogs with hydro, etc.. anything I could think of. I searched and searched and happened to come across a blog by a woman named Lisa. She had a beautiful blog and I noticed she also had two older girls, besides her youngest, Elisabeth, who was her Hydro girl. On her blog, there was a letter to all future Hydro parents, and an invitation to email her. I took her up on it. I emailed Lisa that day and detailed our story to her. She wrote me back the next day and this is some of what she said:
So don’t spend too much time worrying over the details of the future. Just know that she will be yours and you will be hers and that’s all that really matters.The other things will work there way out. You’ll learn more about her abilities and disabilities and figure it out one step at a time. And if you ever need advice from someone who’s been there before, you can always ask me
Words to live by.