Daily Diary
6:00 AM: I get up. Get my son ready. Get his lunch packed. Get him on the bus. About this time, my husband starts getting [my nine-year-old daughter], Josephine, ready. [She has a rare genetic disorder called Tetrasomy 8p Mosaicism, as well as autism.] When she comes downstairs, I take over.
7:00 AM: Once my husband is out of the house, it’s just Josephine and me. It’s chaotic. She’ll pick four different things she wants to eat at that moment, then change her mind. So there’s the mess of that. There are meltdowns, which often include a lot of combative behavior– pulling my hair, grabbing my arm, yelling, hitting. It’s a whirlwind for about an hour.
8:00 AM: After Josephine leaves for school, I have downtime. I have my coffee and breakfast and I decompress. I check Facebook, which is how I communicate with other parents of children with disabilities. I have a chromosome 8 page, so people find me through that. I’m also a Parent Ambassador for the Chromosome Disorder Outreach. When people get a new diagnosis, a lot of times they don’t know where to go or what to do, so they put them in touch with me and I try to help them. I talked to a mother the other day who told me, “Do you know that in this 45 minute conversation, I have learned more than any doctor has told me in the last seven years?” That’s why I do what I do. If I can help just one person, then I’ve done my job.
10:00 AM: Then my day is filled up with [my work as a real estate agent]: appointments, research, lunch meetings. I don’t make appointments earlier than 10:00 because I need that time. I don’t ever want to look unprofessional and nobody needs to know why I can’t do it. They just need to know that my next appt is at 10:00. I’m really careful, especially when I’m meeting new clients, about not letting them know what’s going on in my personal world. Some people won’t select you because of that. They think, “Oh, she’s got enough on her plate. She’s not going to be able to sell my house.” My staff will tell you otherwise.
3:00 PM: I have to cut everything off so that I’m done at 3:00. Josephine comes home at 3:15 and I can’t work until she goes to bed.
[Recently, we went into the city to be in a video for TDF, an organization that offers sensory-friendly performances of Broadway shows.] I almost cancelled. Josephine was having meltdowns and it was a rough day. I was nervous because I had to drive to Times Square, find parking and navigate the city by myself with Josephine and [her service dog] Ryder. I didn’t know what to expect or how she’d behave, because she doesn’t travel well. It was a lot, but I said, “You know what? I just have to do it. It’s important.” And I was so proud that I actually made it in and out of the city. Everything worked perfectly.
6:00 PM: About once a week, when my husband gets home, I rush off to a meeting for my volunteer work. I’m on the West Orange Public Relations Commission and the Downtown West Orange Alliance, which is an organization for the improvement of the downtown community. I’m also an out-of-district liaison for the West Orange Special Education Parents Advisory Council, an advocacy group for special need parents in our community. To me, that’s downtime. I get to communicate with other adults and get a little bit of myself back.
Once a month or so, we host a dinner for medical students from Rutgers University. They do a pediatric rotation where they learn about special needs and how to treat families. Then they come to our house and talk to us as a family and learn about the day-to-day stuff. I bring up things like, “Laugh a little. We have a sick sense of humor in the disability community and that’s OK. Let us enjoy that.” And I tell them, “Listen to the parents. You are the experts in your field, but we are the experts on our child. So listen.”
8:00 PM: Josephine takes anywhere from half an hour to three hours to go to bed. My husband and I switch off on putting her to sleep.
8:30 PM: I don’t work after 8:30. After that, if you want to talk to me about work, that happens the next day. So when my husband is putting her to bed, I’m relaxing or talking to friends or communicating with people online.
This past year was really about understanding my world and fitting my world into Josephine’s world. The moment I start engaging in something else and her, things collapse. So I do my best to be present and with her when she’s here. I had to learn to leverage my time and build in downtime. My mission this year is to [use that downtime] to bring more awareness to special needs on a different level. [I’ve mostly concentrated on] educating people about [rare diseases] and putting a positive spin on things. My goal for 2019 is to write regularly on our blog and Facebook page in a way that is more public, open and raw. I want to bring people into our world and educate them on how to help families if you see them struggling.
Captured January 2019