GUEST POST: What It's Like To Be a Mom of a Young Person With Crohn's Disease
I often get asked what it is like to be the mom of a young person with Crohn’s Disease, and to be honest I don’t know what motherhood looks like without it. My firstborn daughter, Jadyn, started showing symptoms of IBD when she was just a few weeks old. I noticed some blood in her stool when I was changing her diaper and immediately called her pediatrician. He said that blood in the stool can be somewhat common in children and not to worry unless things got worse. Soon after, her symptoms progressed and she started experiencing nausea and weight loss, and eventuality landed in the hospital with failure to thrive. This sparked the investigation that led to a Crohn’s Disease diagnosis just after her first birthday.
Prior to this I was not too familiar with IBD, so I thought we could easily get it under control with medication and go on with life as normal. However, I soon realized the meaning of chronic illness. It wasn’t that simple, so we learned to take it one day at a time. Even though Jadyn was diagnosed so young she has always had a warrior spirit in her and handles whatever comes her way with grace. As her mother, I know that I need to be her biggest supporter and advocate. I never want her to be defined by a diagnosis, and I also don’t want her to be ashamed of it.
Some things that people might not know about mothers with a chronically ill child is that a lot can go into any given day. We have to stay on top of prescriptions, doctors' appointments, therapies, and insurance authorizations. If our child is in the hospital, we spend our days/nights there and then come home to other children who need their Mom too. I sure have learned a lot about perseverance. As crazy as it sounds, I can honestly say I am proud of the mother I have become due to this disease.
How I Stay Hopeful:
First and foremost, my hope is found in God. I trust that He has a plan for Jadyn’s life, and often the difficult things in life are the very things that mold us into who we are meant to be.
I am also very thankful for all of the research being poured into IBD. I often hear about new treatments coming down the pipeline which is exciting.
Tips for Moms of children with IBD:
Focus on today. It can be overwhelming when we try to look too far down the road. Take care of the things that need to be done today and worry about tomorrow, tomorrow.
Set aside time for yourself. Too often mothers suffer from a case of burnout. Even if you can only take 15 minutes, use that time to rest and regroup so that you can take care of your family.
Find community. One of the great things about social media is that I have connected with some amazing mothers in the IBD community. I would love to connect with you on Instagram @grit.to.grace.