Diagnosed with Muscular Dystrophy at age 12, Wife, Mother, and Nana Lori Hastings is the Founder of Lori's Voice, a non-profit that helps assist children with medical items that insurance doesn't cover. Welcome Lori to Powerful Women: Let's Talk.
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Produced by women, about women, “Powerful Women, Let's Talk” is a series of interviews with women who are trailblazers and have helped shape our world, transforming who we are and how we live. “Powerful Women, Let's Talk” is made possible in part by Family Fare, keeping it real.
Shelley Irwin: Wife, mother and ‘Nana,’ proud of her faith, diagnosed with muscular dystrophy at age 12, Lori Hastings, founder of Lori’s Voice, a nonprofit that helps assist children with medical items that insurance doesn't cover. Still married to the high school sweetheart. Welcome, Lori, to this conversation we call “Powerful Women, Let's Talk.” Hello to you, Lori.
Lori Hastings: Hi, Shelley, thanks for having me.
Irwin: I understand you and that sweetheart now spoil your nine happy, healthy grandkids, no doubt?
Hastings: Yeah, we sure do. Every minute we get, every chance we get, we spoil them.
Irwin: I want to bring the heavy discussion to the forefront, if I may. You admitted not coming into our studios because of the cold weather outside. How are you doing with your muscular dystrophy and what is a challenge you still look to overcome.
Hastings: Actually, Shelley, mentally and spiritually, I'm doing great. Physically, I’m trapped in a broken body, obviously, that continues to throw curve balls at me. And one of the biggest challenges I face is trying to stay warm. That's why I couldn’t come into the studio today. But, muscular dystrophy causes poor circulation and overcoming being cold is an ongoing struggle with me. I just try everything I can to stay warm but staying inside I find is the best thing for me, so that’s what I do in the winter, mostly, stay inside and try to stay warm.
Irwin: Yes, but we know you are outside most likely the three other seasons. What would you share with us about the silver linings of muscular dystrophy?
Hastings: Well, there are few silver linings and I see a lot of silver in my adult children. Growing up in a home with a physically challenged mom, observing daily struggles and successes, it seems to have molded my children into adults with extraordinary caring hearts. They're so empathetic toward others and I just love that in them.
Irwin: I’m going to even interject here. You have three healthy children where doctors told you you would not be able to carry kids with MD. You proved them wrong.
Hastings: I did, I did. It was just a great thing. My husband and I were married three months. Two doctors said that ‘you would never have children’ that we’d adopt. Boom, I was pregnant in three months and each child is very healthy and none of them were born with any kind of disorders so we're very blessed, very blessed.
Irwin: Lori Hastings, would you tell us about Lori’s Voice and why your passion.
Hastings: Sure. Lori’s Voice is the nonprofit that I founded ten years ago along with my husband and we assist many children with neuromuscular disorders, degenerative diseases and those with mobility issues. What we do is we help pay for medical items that insurance doesn't typically cover. some of these items are therapy, vans, home renovation, travel expenses for out-of-state hospital visits, special needs camps, community playgrounds, wheelchairs. We run this all out of our home. My office is actually in our sunroom and we have many volunteers that work with us to make it successful. Since we started, nine years ago, we've given over a million dollars to special needs children and their families, which is really exciting for us.
Irwin: Touching lives, giving back. Lori, what’s your advice to any of us overcoming obstacles?
Hastings: I have quite a few things on my advice for overcoming obstacles. One is to find contentment wherever you’re at in life and surround yourself with positive people. I find that positive people make me a better person. I always laugh at myself when I do something silly or stupid, or have a shortcoming, just laugh at yourself. Life isn't that serious and always have a grateful heart. I always tell everybody, don't be a victim or feel sorry for yourself, you know, count your blessings and find what you're good at. I think life is all a matter of perspective. When my kids were little, they would come to me and say this or that isn't fair. I would always respond, ‘life is not fair.’ There is a place where you show your pigs in the summer. But I always tell people to stay close to the good Lord by praying every day and he get us through in life. And he does me, so!
Irwin: Yes, as mentioned, you are proud of your faith. Talking about disability in general, let’s share how we are doing with acceptance, equality and opportunity, disabilities that we can see and obviously talk about disabilities we can't see.
Hastings: Well, I think it's much easier for us to identify certain disabilities that we can see. Obviously, they may need a wheelchair, a cane, or a hearing aid. And those who have invisible disabilities may go unnoticed, therefore treated differently because their disability may not have an outward sign, things such as chronic fatigue, Crohn's or personality disorder. I believe we’ve come a long way with acceptance but have plenty of room for improvement. For example, if you're a parent and you’re out in the store with your young child and you come across someone in a wheelchair. And your child shouts out, ‘Mommy, what's wrong with that lady?’ You hush your child and tell them not to stare. Please stop it, don’t do that. Allow your child to ask questions. Most folks are happy to give a simple explanation of why they may be in the wheelchair.
And regarding equality, since the American Disability Act was signed in, we have watched progression get better and better. Today we have playgrounds with special swings, different sensory equipment to those children with autism, transportation is also much more easily accessible. And as far as opportunity, there may be bigger hurdles for folks with disabilities, but we have grown by leaps and bounds with technology. I believe that opportunity is out there. You must be your own advocate and chase your dreams. We live in the greatest country in the world. Never be afraid to ask for help and always do your research, it helps so much.
Irwin: Lori’s Voice, your voice, Lori. How do young women find their voice?
Hastings: I believe that young women need to search their heart to figure out what their passion is and then put their voice to it. That's basically what I did.
Irwin: What’s the first step to following a passion just like you did and continue to do? What is that first step?
Hastings: The first step is figuring out what your passion is. Ask yourself, ‘what are you passionate about?’ Start today, don't put it off. Take it one step at a time. Surround yourself with positive, intelligent people who can help you and then follow that passion and make something out of it.
Irwin: Something that is consistent with my “Powerful Women, Let's Talk” conversation, the fun facts. You did fall in love with your high school sweetheart when you were 15. Tell me a little bit about that journey.
Hastings: Oh, it's been a wild roller coaster. My husband, Dave was 16, I was 15. He actually saw me walking down the hall in high school. Back then I walked, and I had a very noticeable limp. It wasn't pretty. And he said the first time he saw me, he heard a voice say, ‘that’s the girl I'm going to marry.’ And then we fell in love and we've been together ever since. He’s such a great guy.
Irwin: What about growing up on a dairy farm?
Hastings: Oh, it was so much fun. My dad and my uncle owned dairy farm and it was right up the road at my grandparent’s house. Lots of fun. Spent many days with my grandma in the milk house putting milkers together, walking down the lane feeding the cows, playing with the chickens. It was just a great place to be. Outdoors, lots of life on the farm. We were able to watch baby animals be born. It was just a great lifestyle; I wish every child could have an opportunity like that.
Irwin: Lori you also mentioned, of course, having three healthy children where doctors told you you would not be able to carry kids, and here we are. Nine happy, healthy grandkids that you love. What's that like?
Hastings: Oh, it is so wonderful, Shelley, I'm telling you. Raising your own kids, you have to have all these rules and discipline and structure and, boy, grandkids are a whole lot more fun. You have them over and you sugar them up and send them home and you play, play, play. And just the love they bring to you.
Irwin: Are they, Lori, aware of your – shall I say – disability?
Hastings: Absolutely, they're very aware and we have a Barbie doll with a wheelchair, a Barbie wheelchair. They play with that, they’ll talk, they’ll tell me, ‘Nana, you can't get out of that chair’ and they help me. They will pick up. One of our granddaughters, she's five, and she’ll push me in my wheelchair, for example, if we’re off to a park and she’ll say, ‘we can't go that way, there's no room for you Nana,’ meaning there's not a cut out in the curve for me to get in, and they'll find a ramp. They're very aware and I’m very happy about that I teach them different things.
Irwin: Every year, Lori, you host a private party, Camp David, what's this?
Hastings: Camp David is kind of a play on words because my husband's name is David and grandkids don't know that Camp David is the place, you know, retreat where the president goes. So, when we had these little grandsons - we have five of them - I started every year. We get together, we usually go to a park, and I have a theme. One year it was pirates and we have a lot of games, we have treats. They look forward to it every year. When we had the pirate theme, we had a pond and we went magnet fishing. Well, my husband went ahead and threw a bunch of metal in this pond and a treasure chest, kind of planted it under some rocks, he knew right where it was, and the kids found it and they're so excited. And we have pictures. Last year they threw a pie in my face. The past couple of years, we've incorporated their dad and even my dad so it's an all-boys thing. The little girls got a little jealous so we started to throw a princess party now every year. So, it’s just a fun thing, family memories.
Irwin: Lori, you still must have much on your bucket list. What’s still on the list?
Hastings: One of the biggest things on my bucket list - and I won't get to do in this life because I'm unable to travel - but I would love to go to the Holy Land and walk in the footsteps of Jesus. I just think that would be amazing.
Irwin: What's a recommended reading?
Hastings: I love the book ‘Epiphanies’’ by the Sisters of Life. It’s a really great book, I just finished it. It’s a meditation with scripture and it's all about different stories in the Bible and you walk through them as you're walking with Jesus. And there's just moments with God where he really reveals himself in the most subtle way. It’s just a really good book that I really enjoy.
Irwin: What's the future with Lori's Voice?
Hastings: We are always looking to do bigger and better things with Lori’s Voice. A big dream would be to have a Lori’s Voice Lodge somewhere in Grand Rapids close to the hospital where children could come stay, not have to pay. My vision is to have different rooms, each room decorated by a different child that we’ve helped, with a different theme. And families could stay there for free when they're traveling out of state. So that's my dream, I hope to see it happen.
Irwin: One has to dream. Thank you for joining me on “Powerful Women, Let's Talk,” Lori Hastings, founder of Lori's Voice and so much more. Appreciate your time.
Hastings: Thank you, Shelley, it’s always a pleasure to talk with you.
Irwin: And thanks for listening to “Powerful Women, Let's Talk.”
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