I have been wanting to share more than recipes and tips for dining in and out with food allergies and celiac disease. This blog has been a journal of sorts for me and has exposed a lot of the emotions I’ve experienced over the last nine or so years of motherhood which have been a perfect storm of incredible joy mixed with overwhelming fear and anxiety. I don’t think I’m alone in feeling this way. I believe as parents, many of us have a vulnerability that was beyond our imagination before we had children. Once born, these amazing little beings become our lives and every emotion we have becomes permanently intertwined with theirs. We thrive in their accomplishments and happiness and we ache in their sadness or pain.
My initiation into motherhood was a scary one as many of you already know. I was thrust into the delivery room at 29 1/2 weeks not knowing why my baby wasn’t growing. In the week ahead of Jake’s delivery, they placed me on hospital bed rest so they could check daily for signs of distress. The doctors prepared my husband, Jason and I for so many worst-case scenarios as to why and what would happen when he came out at 1 1/2 lbs (or 707 grams to be precise). The next 2 1/2 months in the NICU were spent in a fog. We moved closer to the hospital so I could be there all day and go back and forth with ease.
Day and night the sounds of life support machines beeped to heed warnings of a heartbeat that was too fast or breathing that had stopped. The alarms went off for all of the babies at different times and each time I heard them, my heart stopped and I held my breath, gripped with fear. We didn’t come out unscathed. It was tough.
By the end of each day when I was worn out and aching with anxiety, Jason would come in for the evening shift. His bright demeanor and enthusiastic “Hey, buddy!” to Jake would help me realize we needed to be positive and strong to help see him through the adversity he was facing at such a fragile age. It wasn’t how I’d imagined my baby starting his life. I had hoped he’d be born full-term and come home to a beautiful nursery. But, that wasn’t our reality. We had to make the best of it and hope to get him home healthy, as soon as possible.
It was an odd experience in the NICU. In some ways, you almost didn’t feel like your baby was yours. I had to ask permission to do simple things like hold Jake and give him baths. Overall, the nurses and doctors encouraged our bonding but it was still difficult the times they told me I couldn’t hold him because they didn’t want him out of the incubator for too long. When we left the hospital with Jake in a stroller, I remember constantly looking over my shoulder with the fear they were going to tell me I had to bring him back for some reason. They didn’t.
Jake has thrived beyond all of our expectations. He is my little hero and a reminder to me every day of how lucky we are for every little thing I might have otherwise taken advantage of had we not had the experience. I try not to sweat the small stuff with my kids. We have some bigger issues to tackle. When I get down and out about Jake and Jeremy having life-threatening food allergies, Jeremy and I having celiac disease and the fear of Jarrett also having these issues, I remember what Jason said when Jake first got diagnosed; “Jackie, if they told us, back when Jake was born, that he would be ok but he would have a life-threatening food allergy, we would’ve taken it and ran.” It’s true. We would’ve taken that trade.
So here we are and here I am. I’m trying to look at the positive side because what else can you do? We have these issues with food allergies and celiac but we also have a lot of happiness and definitely dodged some bullets early on. These issues don’t define us, they are just a part of a much bigger picture. They are also the reason why I am here on this journey sharing recipes, experiences and resources with you and why I advocate for food allergies in our school and in my day to day life. In upcoming posts, in addition to sharing recipes and experiences in culinary school, I will share some more personal stories like this one, including how I worked with our school to create an “allergy aware” policy and what that means, the signs and symptoms Jeremy and I had for celiac disease and how we were diagnosed as well as the emotional side of parenting and living with these issues.
I believe this may be helpful for some who are going through the same things. I also think it’s helpful for me to share them. If there are any topics you are particularly interested in, let me know and I will try to talk about them as well. Thanks for following, reading and being part of my journey.
Loved reading your story and appreciate your positive perspective. Thanks for sharing!
This was so powerful jackie! And as a mother of a severe allergic kid, I am grateful for your quest.
Thank you, Monica! That means a lot for me to hear.
Thank you for sharing, Jackie. Can’t begin to imagine what that time must have been like for you and Jason.