Tell us about your family. If your child has multiple diagnosis, feel free to share them.
Let's see! Charlie, my oldest, is the one diagnosed with hydrocephalus. It's part of a constellation of diagnoses he has that all involve the brain--cerebral palsy, hydrocephalus, and epilepsy. I gave birth to twin boys in June who were a tad premature. My husband is an engineer who works very hard so I can stay home with all three of my guys.
Tell us about the moment you were told your child had hydrocephalus.
It was actually several months before we knew definitively that Charlie had hydrocephalus. The doctor showed me the scans of his brain and I knew that we needed to have surgery. Even so, I did a lot of crying and soul searching in the days before surgery.
How has hydrocephalus affected your daily life? Maybe give one "real life" example.
I actually don't believe that hydrocephalus has affected our daily life, but it does come into play on a fairly regular basis. With any illness, it's always in the back of your head that it could be shunt failure. We also have to make special plans for hurricane season. While we are not in the mandatory evacuation zone, we always plan to evacuate because we would hate to be trapped in our homes and have an issue with the shunt.
Share a moment when you were frustrated or discouraged
I think it's always frustrating know that there's something in your child's body that could go wrong at any moment. It feels like a ticking time bomb from time to time.
Share a moment when you found joy or hope
Actually, I was blessed to meet a young man with spina bifida/hydrocephalus one day while we were waiting for an appointment with our neurologist. He was in a wheelchair, but he was an articulate high school graduate with friends. It was wonderful to see how much he'd managed to accomplish with his life despite having a diagnosis that would frighten many.
What do you do to keep your sanity? How do you take a break?
Well, blogging is definitely a wonderful tool for keeping my sanity! I take lots of little breaks--my husband lets me sleep in on Saturday mornings, my MIL babysits. I'm very lucky to have a supportive family who helps me stay sane.
What advice would you give to a family who has just received a new diagnosis of hydrocephalus?
I would tell them not to spend too much time worry about the future--it will get here soon enough. Instead, focus on what needs to be done now, and enjoy the baby period because it end far too quickly.
How do you deal with difficult questions from onlookers?
I always try to answer questions--I believe understanding breeds acceptance.
What is one thing you wish families with typical situations realized about families dealing with special needs?
I just hope people realize that a disabled child is not a tragedy. I love my child as much as anyone and I think that our lives are different, but not less.
What is your dream getaway (either family, couple, or by yourself. . . or all three)?
We have a beautiful time share on a beach in Florida and that is definitely my dream getaway--I'd stay for weeks if I could. But if I'm dreaming, I'd like to bring a sitter with me!
What is your child's favorite toy/therapy tool?
Definitely his iPad! We're still working on getting him to use it as a therapy tool and not just a toy, but we're already seen major improvement in isolating his pointer finger as a result of using it. He's also gotten a lot better at asking for help, which was actually a goal for his first year of preschool.
What is your favorite coffee (or coffee alternative) drink?
Gosh. I drink Diet Coke in the morning and water the rest of the day--not terribly exciting.
A theme on your blog seems to be acceptance, both personal and from onlookers. How has parenting Charlie challenged your expectations for parenting? What are some ways that you have sought acceptance and understanding from those around you?
Maybe I'm a pessimist, but I always expected parenting to be challenging, and it is. What I have found is that it's challenging in ways that I didn't anticipate. Charlie has taught me that it's impossible to look into the future. It's impossible to know what lies ahead. So instead of worrying about those things, it's best to just face the right now and let the future take care of itself.