I met one of the cutest little girls I have ever seen at a family support retreat last summer. Her name was Marielle, and her Mom and Dad are equally as special as she is. I know you will enjoy meeting them as much as I have!
Tell me a little about yourself and your family.
Barry, Marielle and I live in Northern Virginia, about 15 miles from Washington D.C. Barry is a computer guru by day and musician by night. He’s been sharing his love of music with Marielle since the day she was born and bought her first instrument – a drum set – when she was 17 months old!
Tell me more about Mari’s disabilities. Did you know when she was born that she had disabilities. If not, how did you feel when you discovered it?
Marielle was born with a severe bilateral sensorineural hearing loss. It was caused by a recessive genetic mutation neither of us knew we carried. We found out when she was six weeks old. I was too busy dealing with the logistics of it all to really deal with the emotional issues. I just dove right in and knew there was no time to waste. I quickly became a thorn in the side of many providers!
You blog a lot about Mari’s issues, and that is so valuable to me and I’m sure, to others that read your blog. How did you go about making the decision to blog about her? What do you personally get out of blogging?
I started blogging during my pregnancy. It was a great way to keep my family updated without having to call or e-mail all of them constantly. Once she was diagnosed with a hearing loss I started a second blog (http://babybeethoven.blogspot.com). I didn’t want the regular blog (http://cootiechronicles.blogspot.com) to seem like hearing loss was the defining factor in her life. Plus I knew a lot of the families that might be interested in her hearing loss wouldn’t really care to hear about things like our contractor woes or my breastfeeding challenges!
What is a typical day like for you and your family?
I own my own event planning company which gives me a lot of flexibility. I work from home and stay with Marielle as much as possible. We do lots of playdates with both hearing and hard of hearing/deaf children. When she was younger and I was nursing she traveled with me to all of my conferences. Now she’s a handful and gets to stay home with daddy instead!
It’s very hard to find good childcare providers who understand things like the importance of talking to her constantly. We’ve even had a babysitter break a hearing aid. I’ve done my best to find qualified help. We’ve even had some that sign and one that’s a speech therapy grad student. I’ve had to pay a lot for good help, but it’s been worth it. Thank you, Craigslist!
Marielle turns two on December 15 and will start a half-day preschool program at a local cued speech elementary school. We’re so lucky to have a hearing impaired center that meets all of our needs. They’ll pick her up on the bus and bring her home. I’m looking forward to having a few hours free a day rather than having to cram a full day’s work into a very short and unreliable toddler’s naptime!
How have Mari’s disabilities affected you as a person and as a mother?
Some days are really hard. I think how much easier life would be if I didn’t have to juggle all the medical appointments or worry if I was talking to her enough. I get bitter that my family and friends haven’t made more of an effort to learn to sign OR to cue. I would be elated if they did either, but the majority don’t.
Most days I realize it’s really not so bad. I have met so many amazing people that I never would have been exposed to otherwise. Barry and I always joke that we would have been much worse parents if Marielle had turned out “normal.” We have learned so many things from her wonderful Teacher of the Deaf.
What did you do right? What do you wish you had done differently?
I don’t take no for an answer. When the school district tried to restructure the hard of hearing preschools and postpone Marielle’s entrance for a year, I fought for 3 months until they finally caved. I think they were all just tired of me and said yes to shut me up!
I wish I had somehow found a way to take more time for myself. I feel like the first 2 years of her life has revolved around her deafness.
What do you want other parents to know?
You have to be your child’s advocate. Keep calling and calling until you get what you need. No doctor or provider will take on the “medical home” role. You will have to be the person keeping copies of every test result, every insurance form, every bill. I suggest lots and lots of large 3-ring binders!
Make sure to visit Monica and her lovely family at either of her two blogs, http://babybeethoven.blogspot.com or http://cootiechronicles.blogspot.com.
Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.