I am terribly saddened by Roaring Mouse’s loss of her husband and my heart is going out to her right now. I debated about posting this because my mind really is on Roaring Mouse. However, she is such a disruptor and advocate, I thought this would be a great post to honor that advocacy. Her husband was also such a sweetheart about Robert and recently sent his best to him during Robert’s most recent hospitalization and wanted to be kept apprised of updates on him (Roaring Mouse shared this with me). This meant so, so much to me. Roaring Mouse, I’m so sorry for the loss of Greg and promise to continue to advocate and disrupt and think of you while doing so. You are an inspiration to me.
This is my latest on advocacy:
It came about so unexpectedly and quickly I barely had time to think much less write about it. I received an email from a producer on a Tuesday evening asking if Robert and I would be interested in participating. After getting over my initial skepticism that this was a spam email or someone selling something, I couldn’t believe my good fortune and was stunned I was being asked to talk about the working caregiver. I took a deep breath, composed a reply email (and proofed it several dozen times) and calmly responded we would be very interested.
Inside I was jumping up and down doing my happiest happy dance.
Once all the dancing was over and I shared my good news with my hubby and daughter (who were doing their own happy dances), I mentally prepared a quick checklist of things to do before the television interview:
- Talk to Robert to be sure he wanted to do this (given his life purpose is to spread awareness about epilepsy I was confident of his answer);
- Research the best colors to wear on television;
- Review my list of facts and figures on epilepsy and working caregivers;
- Lose ten pounds (hey, if the camera adds 10 pounds, I need to lose 10 pounds to counteract that effect!); (side note: Kathy gave me a tip for next time: Spanx!).
The producer responded to my reply the following day (Wednesday). He was happy we could participate and would like to film footage at my office, with Robert at his Day Program and some at our house (thankfully we just had the house cleaned so I don’t have to add that to the list!).
Excellent! Just let me know when you’d like to film and I can make the arrangements.
Um, tomorrow? As in, the day after today? (Crap – so much for losing those 10 pounds!).
Doing the interview so quickly actually was a good thing because I realized I would have turned into a bundle of nerves if I had to wait weeks to be interviewed. (I was nervous enough with a day’s notice!).
I talked to Robert and asked him if it was okay he was interviewed the next day. He gave me his usual, “that sounds good” response but laughed when I told him he would be a star and he would have to give people his autograph. He was on board!
Day Program and my office were equally agreeable to my unexpected request. (Thank you!)
Since I’ve never done anything like this before, I didn’t know what to expect. The experience was actually quite fun and the producer, the sound and camera guys were absolutely terrific to work with. They eased my nerves and were so friendly and kind to Robert.
The segment was focused on the working caregiver as well as the limited definition of family under FMLA so I was happy to discuss this topic since it is so important to me and closely affects my care of Robert.
The end result was broadcast on our local channel KVIE2. Our cable company actually doesn’t carry it so I didn’t get to watch it on television but our segment is on the “Inside E Street” website and can be viewed here.
(The day after this was filmed Robert was hospitalized with pneumonia and sepsis which definitely put my working caregiver hat to the test!).
I have to express many thanks to the Inside E Street show for focusing on this important topic and to the producer and his crew for making this such a positive experience for Robert and I (and for their excellent editing skills!).
Once this was available to view on the website, I showed Robert the video and he declared it “excellent.”
Now I just need his autograph . . .