Epilepsy Stars - Daniela and Lulu
A shining epilepsy star mom sat down with us this issue to tell us about her life and her family's life with epilepsy as well as how they are all pitching in together to face epilepsy head on. As you will see when you read the article, "epilepsy picked the wrong mom to mess with".
Tell us a little about you, your family. How did epilepsy come into your life?
Epilepsy showed up on our doorstep in August of 2009 a few days from my 32nd birthday. I was at work and my mother was watching LuLu, then 22 months old. She wound up calling me after she called 911 and attempting to give her CPR not knowing how to handle the situation. LuLu had her first seizure, it presented itself along with a high fever. Febrile seizures, seem to be a launch pad for many with this journey. I blew every red light to get to Hackensack University Medical Center and got there before the ambulance did. The universe was no match for my mommy strength that surfaced during this emergency. Once we were settled in the emergency room and the nurses navigated the situation, I had no idea that it was going to be a labyrinth of trying to find that perfect medium going forward to keep her from seizing and keep her away from "stress" . Also to keep her so well rested that we couldn't sleep another minute in the day. (I loved all the cuddly naps I got to take with her though) It wasn't until fall of 2011 that we received the official diagnosis. We would go to a few Doctor's before finding our very capable and qualified superstar Doctors at NEREG. Her diagnosis, Absence Epilepsy, with a twist. She doesn't only deal with staring seizures, where she clicks in and out of parts of her day. She has had 4 other Grand Mal seizures to date that present themselves with fainting, extreme pain in her head, disorientation and ultimately leave her exhausted. It took about 2 years of tracking her, journaling what was happening and going for a few one hour EEG's, an MRI, a cat scan, blood work, simple neurological testing, 3 different Doctors and what feels like hundreds of hours searching Google and reading medical journals, speaking to other people whose children had similar experiences to find NEREG and truly understand and navigate this windy path with clarity.
Tell us a little about Lulu's life with epilepsy and some of the treatments you have tried?
She is a vivacious, sassy, strong willed, very funny little Kindergartner. She is cognitively where she needs to be. Her teacher is pleased with her school work. Lulu is learning how to read and doing well! She is different than the other kids in some ways that I often wonder are only obvious to me. She gets tired more quickly, she cannot stay up late otherwise the next day we see breakthrough seizures more prominently. She gets impatient and I often wonder if that has to do with the fact that she missed something and is frustrated or is it because she is 6? She has walked into a wall during a seizure, I have had to pick her up from school because she walked into a table twice and was disoriented. Her good days outweigh her bad days but my radar for her and as a mother of a child with Epilepsy never gets turned off. She is not over booked with activities as that affects her poorly. She takes piano and occasional goes for horseback riding lessons, is a Daisy and we attend a kids Zumba class from time to time. As far as treatments go? WE HAVE TRIED SO MANY THINGS! Where do I start? She is on her 4th medication since this journey began. Right now she takes Lamictal and although she has seizures still, it has helped tremendously with controlling them. We have done Cranial Sacral Therapy, Reflexology, Aromatherapy, Biodynamic Feedback, Nutrition Therapy, Energy Healing and Yoga. These all helped slightly, but with her being so young it was hard to see which one was best for her. I will revisit a few of these again as she gets older and can sit still longer.
Tell us about the challenges you have faced and the helpful things that have happened along the way?
The "mommy" challenges are almost daily, but that is ok with me. LuLu knows she has Epilepsy and she knows she has seizures. She knows she takes medicine, which we call "brain vitamins". My main challenge with this is to make sure I raise her with confidence and age appropriate knowledge about what makes her, her. That she knows we are all built differently and it doesn't make us any less beautiful or significant than anyone else. Overall, I want to teach her to support the Epilepsy community and learn all she can about herself and other kids that live with it as well. I have a tremendous group of family and friends that are on this ride with me. My second cousin has Epilepsy, she is a senior in high school. She is off to college next year and she and I speak about it too. Her parents have helped me a lot as well. We all talk about it and they donate to my various fundraisers and I am forever grateful. What helps the most is when someone connects me with another parent who has a child with a seizure disorder and I call a complete stranger and we talk to each other about our experiences. It is the best form of support. I have a client with a daughter in her 20's with Epilepsy and I've broken down crying and I know she genuinely understands. She has helped me a great deal see that LuLu will also one day be in her 20's and taking the world on by storm. Albeit possibly with seizures, but still leading a healthy, productive, positive life. I feel like I'm learning how to do this with the support of other women, moms specifically and that has helped the most.
Tell us about the children's book your husband wrote and how the two of you used it to raise epilepsy awareness and funds?
Chris wrote, illustrated and self-published, "How Do the Animals Live?" in 2013. The book is about LuLu and her fantastical adventures with different animals and their habitats. It is a children's book and has sold over 1,000 copies to date. He dedicated the book to LuLu, who is his stepdaughter. We got married when she was 3. We were supposed to have our first date the night of her first seizure. Obviously I cancelled but it all worked out in the end. :) Anyway, he has helped with all of the fundraising efforts throughout the years. From designing flyers for local fundraisers to walking in Seaside Heights and also last year at the National Fundraiser in Washington DC., we were there as a family. He is a big part of her day, helps with meds, has been the 911 dialer on various occasions and has truly been a source of strength during this journey. When his book came out, he donated $1 for every book sale for a period of time to the Epilepsy Foundation of NJ. He has another book coming out next month and has already expressed wanting to do the same fundraiser again. There is a poem in the new book that touches on the subject of LuLu's Epilepsy. It is called "Time". He also wrote another poem entitled "Wheels" about a little boy in a wheelchair and his new friend who is a turtle. The book is called "Wishes for Fishes" and is a collection of short stories. He has expressed that in his new book, there is a general theme of ignoring what could be viewed as misfortune and highlighting the positives with whimsical ideals. When we had to take LuLu for her 4 day EEG, he helped fill the days with art, play-doh sculpting, puppetry, etc. He donated a copy of his book to the Epilepsy floor for other kids to hopefully enjoy as well.
You have been an active epilepsy advocate for years-tell us some of the other great things you have been up to in the past?
I will continue to be an active epilepsy advocate. I don't think that will ever change, it is too large a part of our lives. I own a spa in Bergen County and have hosted fundraisers for many different causes. Most currently, I developed an internship program with Children's Aid and Family Services for teen girls in the foster care system. One at a time we have an intern work at the spa for a period of time to see what skills surface and how we can help nurture them. One intern had exceptional skills as a budding makeup artist and hoped to pursue that later in life, another intern flourished in the clerical department and later went on to enroll in business administration courses. My staff and I work together to make this happen, I could not do it without them.
What plans do you have for the future and epilepsy?
Chris and I are in the process of pursuing adoption, so hopefully there will be another child in our home this year! Lulu has a baby brother at her father’s house and is ready for a kid sister or brother here and super excited about it. Although she does say "Boys are a lot of work, I want a sister" Little does she know.... HAHAHAHA!
My plans for Epilepsy? A friend said after learning about LuLu and her diagnosis, "EPILEPSY PICKED THE WRONG MAMMA TO MESS WITH!!!". That mantra will keep me forever fueled. I am planning to be a member of the committee for the first ever 5K for Epilepsy in Liberty State Park in the fall. I am also hoping to actually run (maybe walk a little) the whole thing too!
I recognize Epilepsy is multi layered and the challenges for other families go deeper, I would like to let them know, that I am fighting for them too. Our children need us and we are all doing a great job! Thank you to you Dr Myers, you are the Epilepsy's biggest cheerleader and of course to Northeast Regional Epilepsy Group for making us feel at home.
We are given this gift, this life - it has been my choice to feel passionate about something and make it better. Through art, community services, personal connections and simply, love.
So grateful!!!
