For IBD mom, Suzy Burnett, reflecting on the past year and half of living through the COVID-19 pandemic causes her to feel flooded with emotions. She knew having three children under the age of five at age 41, while dealing with the ebbs and flows of Crohn’s disease, would be challenging. She delivered her son, Guy, just as COVID cases were starting to soar. Now, she’s able to look back on how her family adapted and thrived, despite the difficult circumstances of living through a global pandemic with a chronic illness. I’ll let her take it away…
Like many families, we’ve worn masks, stayed at home, literally have seen no one except our wonderful neighbors, and made sacrifices to ensure the safety of ourselves and others. We made the difficult decision not to send our 5-year-old to kindergarten, rather, enroll her in virtual 4k from the confines of our home. Our 3-year-old also didn’t attend preschool a few mornings a week like we had originally planned. We have noticed the lack of socialization has impacted her the most. Our 15-month-old is just now meeting family and friends for the first time. He takes stranger danger to a whole new level, but we know he’ll warm up in due time.
My husband, like so many others, started working from home. What was once thought to be a temporary safety precaution, has become a permanent situation. He continues to work in a room without doors while the wee ones race around playing superheroes. Noise canceling headphones have become a lifesaver. All of us together at home, day after day, month after month. Our bond has grown deeper, and our Burnett Party of 5 has survived. I can honestly say we live fuller, laugh harder, hold each other longer, and love deeper.
Dealing with the lifting of the mask mandate
Just as we were beginning to get used to our personal version of Groundhog’s Day, the mask mandate was lifted. This is a huge milestone, but with that brings excitement along with anxiety. My husband and I are both vaccinated, but our 3 young children will have to continue to wait their turn. To say we’re trepidatious about starting to acclimate back into society is an understatement. We’ve been in our little bubble on Welcome Drive for more than a year. I don’t think things will ever get back to “normal,” per say, but we’re looking forward to what our “new normal” will be. It’s a new beginning, a fresh start to be more present, and we have the opportunity to give precedence to things that matter most in life. Things will be a little different than before, and we will always remember and carry the weight that was and will forever be COVID.
We will continue to have our groceries delivered as well as basic necessities, because it’s unclear who is vaccinated, and I’m not going to rely on the honor system of strangers to keep my kiddos safe. However, I am beyond the moon ecstatic that our girlies will both be doing outdoor soccer and playdates with other vaccinated families. My husband will continue to work from home, but this is a change we welcome and greatly appreciate. It has given us time as a family we never knew we were missing. Our oldest daughter, Lucy, will finally be attending kindergarten…….wait for it….IN PERSON. I am so proud of her. She’s sacrificed so much these past several months. She’s handled herself with grace and class far beyond her years. We’re planning our first family trip in over two years, and I am completely overwhelmed at the mere thought of the happiness this will bring.
Coming out stronger than before
It has been months of peaks and valleys, but our mountain remains strong. On top of enduring the pandemic, we lost our family cat, Miles. He was a furry friend to our littles when they couldn’t see their own friends. My dear Grandma Connors was called amongst the angels, and now she protects us from above. I also recently almost lost my sister due to a post birth hemorrhage, but now she rests safely at home with her baby boy. And I am recovering from a nasty bout of C.difficile. Yes, the one time I left the house I picked up a bacteria from the hospital. Through it all though, we’re stronger than ever before because of our strong family foundation.
My point in saying all of this is that we all go through our own struggles. Life is so unexpected, and often we can’t choose what we’re dealt. We can, however, choose how we handle the storm. We’re so grateful for our health, happiness, and each day we’re given. Take NOTHING for granted because every day is a gift. Everyone has been impacted one way or another these past few years, and now it’s up to you to see where your ship will go as you navigate life with IBD and in general. As the tides of the ocean swiftly change, so will the moments in life. Savor the moments.
Connect with Suzy on Instagram: @crohniemommy
Check out her blog: Crohnie Mommy
We know our bodies, we know our triggers, and we are the ones who are ultimately going to have to pay if symptoms arise. Comments like “Oh, I didn’t think you could eat that?” or “Isn’t that going to land you in the bathroom?” are completely unnecessary. Focus on passing that side dish of mashed potatoes rather than giving us the side eye at the dinner table.
Bringing “safe” foods or eating ahead of time at home provides comfort and allows us to enjoy more of the party. Please don’t take offense if we eat very little, or nothing at all.
Please trust we know the side effects of the medications we are on; we know the risks of the surgery we may have to get; we know it all. Please don’t tell us to start taking a supplement you found online. Yes, we’ve heard of: CBD oil, turmeric, probiotics, the list goes on. Please don’t question the safety of our biologic. Our disease is our reality. Unless you live it, it’s not yours.
Just as with food, everyone with IBD responds differently to alcohol. We understand a glass of wine here or a beer there at a celebration may not seem like a big deal, but one drink can be enough to cause us extreme abdominal pain. Feel free to ask us, but if we decline the offer please don’t pester us, ask us if we’re pregnant, or try and make us succumb to peer pressure. We’d much rather be sober and present at the party without pain.
It was a brisk January morning. Tears filled my eyes as I was overcome with emotion. Our rainbow baby is here, safe and sound. Another pregnancy behind me, a pregnancy that silenced my Crohn’s disease and provided sweet reprieve from my chronic illness. It was time to take Sophia home and start our life as a family of four.
Each time I have a procedure or deal with painful symptoms, I see their faces, I say their names in my head, and it brings me a sense of calm. My goal when Reid was born, was to stay out of the hospital until he could walk, luckily that’s been the case. He’ll be two in March. Now, I have that same goal following the arrival of my daughter.
Motherhood and IBD can be a difficult and challenging balance. Some days the fatigue and symptoms are so debilitating you feel like you’re falling short. At the same time, the days where you’re feeling well, remind you that you are so much more than your disease. Just because you have a chronic illness, doesn’t mean you are robbed of experiencing the beauty of life and what it feels like to have your very own family.
It all starts with recognizing where you are in your patient journey and then determining when your symptoms and body are in the best shape to get pregnant. While everyone’s disease experience is different—the worries, concerns and fears associated with parenting and chronic illness are often the same. Always know you are never alone. Communicating these feelings with those around you, makes all the difference. Lean on our patient community and all those who’ve lived your reality.
When Sophia Shea entered the world January 14, 2019, our family received a wonderful gift. Between our son Reid and our baby girl, we could not be more blessed. My chronic illness has given me such an appreciation for health and for life in general. With the pregnancies behind me, I often reflect on where I started back at age 21 in 2005. At that time, in my eyes, I was Natalie and I had Crohn’s disease. There was no telling what my future would hold. Now, nearly 14 years later, at age 35, I’m so much more. I’m a mom to two under two. I’m a wife. I’m a daughter. I’m a sister. I’m an aunt. I’m a friend. And I also have Crohn’s.
I’ve also been blessed with a beautiful wife and life partner, as well as four amazing children (10, 7, 3, and 9 months). This takes an already difficult situation, and adds more “life” responsibility as well. 
Take the time to get to know a father with IBD, and you will meet one of the most courageous strong willed people in the community. As a man, we can sometimes let ourselves down because as an individual, it just impacts me. But as a father, that is not an option. We must persist, have faith, and fight the fights every single day, so that we can continue to mold and shape our children, and provide support and guidance for our families that mean absolutely everything to us. 
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