10 Minutes With: Jenna Gines
Meet Jenna, a huge advocate for people with disabilities and mom to three sweet kids: Lincoln, Jackson and Kennedy. Below, she shares Jackson’s story of life with an undiagnosed, rare genetic disorder and her continuous fight for inclusion. Read on to find our more about what Jackson loves most, how he bonds with his siblings and the amazing progress he’s been working hard to make over the past year.
MTEAM: Tell us a bit about yourself and your family.
JENNA GINES: Hello! My name is Jenna Gines. I was born and raised in Utah. I've also lived in Alabama, Mississippi, California, Kentucky, Indiana and Michigan. I have three beautiful children, ages 4, 3, 1 and a puppy named Teddy. Yes, it is a circus. Yes, I am right in the thick of motherhood and I love it. Everything in my home has a place, I love cleaning and organizing, change and exploring new places. I love empowering women through life, motherhood and life with a diagnosis. I'm a huge advocate for people with disabilities and love the light they bring to this world.
MTEAM: Your son Jackson was born with a rare undiagnosed genetic disorder. Can you explain a bit about how this manifests itself in his life? How are his needs different from his siblings’?
JG: My second son Jackson, who is 3-years-old, was a surprise from the very beginning. It didn't take us long to get excited to have two boys, 17 months apart. He was a beautiful, healthy baby. I remember telling my husband, there is something about this boy, I could feel it. A few of our family members started noticing that his eyes would shake a little when you would rock him. I hadn't really noticed it, but said that I would mention it to his pediatrician. His doctor said, "It looks like he has Nystagmus; do you notice anything else about him?" I thought, now that you say that, he's not sitting or rolling very much. That started the entire process... We met with a neurologist who suggested we start with blood work and an MRI and we went to see the eye doctor. We received a diagnosis in October 2016. Since that day, we have worked with a genetics doctor who can't find the gene or rare genetic disorder. So we don't know what Jackson "has" or why his body works differently than ours.
MTEAM: Tell us a bit more about Jackson!
JG: Jackson has glasses to help him see clearer and keep his eyes straight. He has low muscle tone and is currently learning to walk. He army crawls around or uses his wheelchair to get around. He's also working on communication. He says a few words and uses sign language. He loves his brother and sister, dinosaurs, cars, trucks, being outside, airplanes, making new friends, reading books, music and car washes. He also goes to preschool four days a week and loves it! He brings a light and happiness with him wherever he goes. We're a little obsessed with him and think he's just the best.
MTEAM: Tell us about your other children’s relationship with Jackson: what do they enjoy doing together? How do they bond? How has growing up with a sibling who has different needs played a role in the way your other children are growing up?
JG: Jackson loves his brother and his sister. He has been especially obsessed with his sister from day one. It's been so fun to watch. When she was a newborn, he would cry whenever I moved her away from him. It was so sweet and kind of funny! He LOVES her! He loves to play with toys with them and wrestle. Lincoln and Kennedy will grow up knowing that everyone is different and that we all have different abilities. They will grow up serving and helping their brother. I love seeing them all play, interact and the love they have for each other. I know Jackson was our surprise on purpose and he's in the middle of them for a reason! I LOVE that they're all so close in age and will experience everything in this life together.
MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Jackson so far?
JG: Some of the biggest challenges with Jackson have been communication and inclusion. I know it's so frustrating for him when he can't move like he wants and especially say what he wants. He understands everything we say, as much as any 3-year-old, but it's getting it out that is the difference for him. Also, not living in an accessible world is a challenge. You don't realize until you use a wheelchair or you have a child that uses a wheelchair. The world has come so far, and I feel like everyone is truly trying, but there are still so many ways to improve. Taking him to a park is a challenge, even "accessible" parks. A lot of the time there is nothing he can do. Having a ramp or making it wheelchair accessible, isn't good enough. We have to be creative to include him and I try so hard every single day to include him in our everyday and for every holiday, doesn't matter what it is, we find a way to include Jackson always.
MTEAM: What advice would you offer to other parents who have a child who has a different needs diagnosis?
JG: One of my life's missions is to empower momma's who receive a diagnosis for their baby or child. I don't want them to be sad and constantly living in a state of wishing their child wasn't this way. There is such power in accepting this new life! I want them to know it's going to be okay. That their baby is still their baby and they will still do amazing, incredible things. It's just a new, different life. It's okay to mourn the baby you thought you had and mourn the life you thought you had. And then accept this one! Because it's oh so good. You will meet people you never would have met and you will learn things you never would have learned.
MTEAM: How would you like to hear other parents respond if their own children notice and ask questions about Jackson’s physical differences?
JG: I love when children notice Jackson’s glasses or his wheelchair and ask about it. It's okay to notice the differences and it's okay to talk about it. Please don't hush your child; instead talk about what is different, talk about what is the same, and encourage them to make a new friend.
MTEAM: What key changes would make this a more inclusive world for medically complex children?
JG: For me, inclusion is huge! Including Jackson in everything makes the difference for me. My heart breaks when he can't play on the playground, not because of his disability, but because of the way the playground was made and designed. My heart just about bursts when we go to an all abilities playground and he can play just like all the other kids or when we find a way to include him, no matter what it is. All parks, children’s museums, etc, should be made and designed for ALL abilities. This means having activities that a child who uses a wheelchair can do and play with, having ramps close to the stairs, not down the street. When all abilities are remembered and accounted for, that makes a difference!
MTEAM: Share a memory of one of the times you’ve been especially proud of Jackson.
JG: Just this past year Jackson has come so far! My husband was laying by him and saw Jackson cover his eyes and thought, is he playing peek-a-boo? My husband started saying, where's Jackson? And he started playing and having so much fun! Since then he sings interactive songs, does pound it and high-fives. You can ask him what a dinosaur says. He's sitting so much taller, pulling himself up on lower furniture and making so much progress. I'm so proud of him for constantly trying, working hard, for being happy no matter what life throws at him and for not giving up. He tries and he tries and he tries. I think he teaches us more than we teach him.