Facing Forward Stories shares real stories from parents and parents-to-be living with chronic illness and disability—highlighting both shared experiences and unique journeys. Through these voices, we offer connection, representation, and encouragement, reminding readers they’re not alone and that there’s no single way to keep facing forward.
After living with Crohn’s disease for nearly two decades, Natalie has navigated family planning, pregnancy, and motherhood while learning to balance chronic illness with the demands of raising three active children.
Through honesty, resilience, and a deep commitment to advocacy, she shares what it looks like to parent with an invisible illness—and why she believes chronic illness can foster empathy, strength, and perspective in both parents and children alike.
| NAME: Natalie LOCATION: St. Louis, MO, USA DIAGNOSES: Inflammatory Bowel Disease –Crohn’s Disease, IBS CHILDREN: 3 children (ages 9, 7, and 4 (turning 5 in July) |
What came first for you: chronic illness diagnosis or parenthood?
I was diagnosed with Crohn’s disease in July 2005 when I was 21 years old. I had my first baby March 2019, so I had been living with IBD a long time before my first pregnancy. At the time, I only knew one woman with IBD who was a mom, so I felt very isolated and alone making big decisions about family planning every step of the way.
What have been the biggest challenges you have faced as a parent or parent-to-be living with chronic illness? How have you adapted to those challenges?
Prior to becoming a mom, I had three bowel obstruction hospitalizations in 15 months that resulted in bowel resection surgery (18 inches of my small intestine + appendix). I was engaged to be married and surgery put me into remission for the first time in my decade-long journey with Crohn’s. My fiancé (now husband) and I knew we wanted kids and that we needed to capitalize on my remission so we started the family planning process with my GI while were engaged and luckily got pregnant one month after our wedding day.
I was very nervous about being on my biologic injection (Humira), but trusted my amazing care team and knew despite the mom guilt that it was keeping me strong to be a safe haven for my son. I worried about flaring during pregnancy and through postpartum. There are just so many unknowns. I am so grateful my three pregnancies were extremely uneventful and flawless. I felt fantastic during all three (despite having severe SI joint dysfunction and pubic synthesis dysfunction with my last two pregnancies), never had a contraction and all three of my scheduled c-sections went according to plan. I had one miscarriage between my first and second children, but that wasn’t believed to be related to my Crohn’s in any way.
One of the challenges of being a mom with chronic illness is how we can feel like a burden to our families on days we just don’t have the energy to leave the house and do something fun. Social media makes it appear as though most moms are doing all the things all the time, when in reality, it’s a highlight reel for most of us. Now that my oldest is nine, I have much different perspective. I’ve learned to believe that my kids are meant to have me for a mom and they never see me as less than or not enough. Kids who live with a parent or parents with chronic illness develop an incredible level of empathy from a VERY young age (before they can talk even), it’s amazing to witness. I know I need to listen to my body and not try to be a martyr. I keep things real with my kids and don’t sugarcoat my experience to them. If I need snuggles and a heating pad, they don’t think twice but to slow down and show me love.
What does a typical day look like for you and your family? Are there specific tips or systems that help your family function day-to-day?
Now that my kids are their current ages, we keep extremely busy with sports and activities. To give you an idea, the only free evening we have is Monday. Right now, we’re on a club soccer team, two baseball teams, and my daughter is in dance. Over the winter, we were on three indoor soccer teams, two basketball teams and dance. In the Fall, we were on four soccer teams and dance. My husband and I coach several of the teams, so it’s always a balancing act and we tag team often to get kids in different places at the same time.
It might sound crazy or overwhelming to some, but I really love this season of life. Being a coach, cheering my kids on the sidelines as they do what they love, really fills my cup and it’s be best distraction. Yes, there are times I’ve needed pain medicine to coach or attend their games or practices, but for the most part, since I’m in remission I’m able to do all the things with no problem. One of my major fears is being blindsided by a flare and missing their sports games and just the day to day life with them. I’ve been a stay-at-home mom since my oldest was born, while also being a patient advocate and freelancer, and it’s been the perfect balance. I haven’t missed a moment of their development or childhood, I’ve been able to slow down on days my Crohn’s is acting up, but I’ve also been able to contribute to our family financially, while doing what I love.
I keep a pretty regimented schedule for myself, I could tell you what I’ll be doing next week when it comes to getting the kids out the door in the morning. I do as much “prep work” as possible the night before–packing their snacks, washing their water bottles, charging computers, making sure homework is complete, etc. I typically wake up at 6:20 am, shower and get dressed, unload my dishwasher, make coffee, take my 13 month old puppy outside for a short walk, make all 3 kids breakfast, pack all their lunches, help them get dressed (mostly just my 4 year old), make sure everyone has brushed their teeth/used the potty/gotten allergy medicine or whatever they may need, do their hair, and then out the door we go for the bus around 8:25am. By having this structure, it takes the thinking out of things for me, and even if I’m in pain or fatigued it’s like a mental checklist that’s just second nature at this point
How do you talk to your children about your illness?
I’ve always been pretty open about my Crohn’s disease; I feel it’s important to be age appropriate with how you go about sharing. I’ll never forget being out for Mexican food with my family last year and I had never said the word “Crohn’s” and my stomach was hurting me. My oldest out of the blue asked me if it was my Crohn’s… I was pretty amazed he knew that’s what it was called.
I feel well most days, but last year I had a little flare that required 3 months of budesonide, my kids witnessed that and we had more conversations about how I feel and how I treat it, etc. They cheer me on during my bimonthly injection and are very desensitized and strong about getting vaccines themselves. They are constantly soaking up everything and learning, even when you don’t think they are. Like I said previously, my worst fear in motherhood is being extremely debilitated and hospitalized for a long time. They are used to how I manage the household and take care of things for them, and I feel like it would be a huge wake up call to everyone if I went down.
What kind of support has made the biggest difference for you?
I have a wonderful network of support of family members and friends who I am extremely grateful for, but honestly since becoming a patient advocate and connecting with thousands of people online with chronic illness who get this reality and know what it feels like to live with an unpredictable and challenging disease, that’s been the biggest source of support for me. If I’m having a “bad Crohn’s day” I always tell my husband and my mom, but there’s a unique camaraderie that arises when you tell that to someone who knows exactly how that feels and what that means. Those words carry weight only someone who can personally relate will understand.
What is something you wish more people understood about parenting with chronic illness?
Being a chronic illness parent with Crohn’s, it’s invisible, I look healthy and just like everyone else. So, unless I say I have Crohn’s—they would never know. I think because it’s chronic, people tend to struggle with understanding the severity and complexity of it. Unless you have cancer or something people broadly understand, I’ve found most people to kind of downplay the struggle.
As chronic illness parents we are expected to do exactly what a perfectly healthy person is capable of. One of the hardest parts of my IBD mom journey was exclusively breastfeeding my youngest while doing colonoscopy prep and being on a liquid diet for five days leading up. I did that while having a four and two year old and no help. We often are forced to put on a brave face at school pick up, the PTO meetings, at school parties, when maybe we are struggling to stand up straight or didn’t eat that morning because of fear of having to run to the bathroom. There’s a lot more than meets the eye.
If you could go back to the day of your diagnosis, what would you tell yourself?
Gosh, that’s a powerful question. If I could tell 21-year-old Natalie anything, it would be that everything is going to play out how it’s meant to. You will land that dream job working in TV, you will find love, you will have the kids you dreamed of, you will get to experience motherhood, you will do all the things. The journey to get there is going to have many twists and turns and setbacks, but your Crohn’s will go from being a scarlet letter in your eyes to a badge of honor. I would give myself a big hug. I was so upset and devastated to be given a chronic illness diagnosis two months after college graduation. My white picket fence fairy tale life came to a screeching halt. I went from being a healthy athlete with dreams of working in TV news to being wheeled out of a hospital in a wheelchair on 22 pills a day. I would tell myself that God gives his toughest lessons to his greatest teachers and that this disease would actually transform my entire purpose and perspective on life in the best way.
What does “facing forward” mean to you?
Not being ashamed, not being fearful of what’s to come. Giving parenting with chronic illness a face and a real life story. Showing others all that’s possible.
Here’s where you can connect with Natalie online!
- Website: Lights Camera Crohn’s
- Instagram: @natalieannhayden
- Twitter: @nataliesparacio
- Facebook: Natalie A.Sparacio
- LinkedIn: Natalie (Sparacio) Hayden
| 🌿 Facing Forward Moments: Natalie’s Recent Parenting WIN! 🌿 That’s a tough one, I am always so grateful for the mundane. If the sun is out and I feel well and I’m with my little guy at the park, that’s a win. If I’m taking my puppy out for a long walk and I’m pain-free, that’s huge to me. Getting to be a mom day in and day out is the greatest gift. Yes, there are hard moments, but now that my kids are 9, 7, and 4, I feel like I’m witnessing just how fleeting this time is with them young, so I’ve really been trying to savor it all. My kids are my greatest motivation to take care of myself so I can be there for them. |
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✍️ Read Natalie’s Article: Navigating IBD & Pregnancy – Difficulty Deciphering Aches and Pains
