It’s the season of gratitude, which can often be difficult to come to grips with when you’re dealing with a chronic illness like Crohn’s and ulcerative colitis. But, hope—hope is a vital part of each of our patient journeys. Hope for brighter days. Hope for feeling symptom-free. Hope for a year without a hospital visit. Hope for figuring out a way to manage our disease. Hope for a cure one day. The list goes on. This week—a guest post from a resilient mom whose son, Jake, was diagnosed with ulcerative colitis in 2014, at the age of six. Sharon Pevsner of California shares how reflection, renewal, and readjustment helps her take on the unpredictability and the challenges IBD brings to her family. I’ll let her take it away…
In 2014, my 6-year-old son, Jake, had just started kindergarten and joined his 9-year-old sister at the same school. To say he was excited would be an understatement. He took to kindergarten like a fish to water. He loved school; his friends, recess and more recess. This Mom finally had one drop off and several uninterrupted hours alone!
Several months into the new school year, Jake’s teacher found him doubled over on the playground. We didn’t make much of it at home until the day I noticed blood in the toilet. The blood set off alarm bells and a run to the pediatrician whom in turn sent us to the GI. He was confident that it was a case of internal hemorrhoids and Jake would be fine after a colonoscopy. After the procedure, the doctor came out and nonchalantly said “it’s not hemorrhoids, I think he has ulcerative colitis.” I had never heard of that before and was stunned. What exactly is that? What does this mean? A quick search of Google and my head was imploding. I had more questions than answers and my heart raced. The doctor was convinced that a course of sulfazaline would put him into remission and never mentioned diet, complications or anything else. Life went on for six months like usual. Until Jake started to bleed again.
Six years later
Since diagnosis, Jake has been hospitalized six times for a total of 60-plus days. As his mom, I have learned so much about IBD, diet, medications, extra manifestations of IBD, persistence, patience, gut feeling, anger, despair, love, faith and most of all, hope.
We have come a long way in six years. I clearly recall one day when my son was so ill and we were in the ER of our local Children’s Hospital. He was doubled over in pain and the doctors didn’t have a diagnosis for what was wrong. Jake looked me square in the eyes and said, “Mom, don’t you know I’m just trying to stay alive.” He was eight-years-old. I felt the wind leave me and held onto everything I had. The diagnosis? C.diff. Another piece of the IBD puzzle I knew nothing about. That hospital stay left me emotionally broken.
How do you hold onto hope when everything feels like it’s falling apart?
When I look back on our journey, several things come to mind. For me, hope and faith have gone hand in hand. I believe there are better days coming and that there is a cure on the horizon. Like faith, I believe hope comes in a variety of ways. Just as the sun rises each day, I take that as a moment to work my three R’s: reflect, renew and readjust.
Reflection: I need to see how far we have come. Each day that my son makes it to school, is a small victory. Slept through the night? Another victory. There was a period of months that our lives were thrown upside down. My son started suffering seizures two years after his IBD diagnosis. While we are not in remission today, we are far from those frenzied ER days and even if we were to encounter that again, the knowledge we have gained will keep us steady as we navigate rough waters.
Renew: You must take care of yourself in whatever means possible. This journey doesn’t just affect the sick child, it effects the entire family unit. Therapy, exercise, massage, friends, a night away. The reason airlines tell you to put on your own air mask before helping your child is because if you aren’t stable, your child won’t be either. I have bad days. Labs that are horrible can throw me into despair. I go back to faith. In Hebrews 11.1 “Faith is the assurance of things hoped for, the conviction of things not seen.” I allow myself a day to be sad and angry and then I rise again. My son is a warrior and I will be too.
Readjust: I have joined countless Facebook groups on IBD, epilepsy, diet and other therapies. I need to make sure that what I get out of the group meets or exceeds my expectations. Early in our journey I was in a group that gave me anxiety every time I read a new post. I realized that that particular group wasn’t for me and I exited it and found others that fit our philosophies and experiences. I have had to adjust my expectations of friends (they mean well, don’t they?) and even have had to take a step back from some friendships that don’t nurture me. My goal is to get my son into remission and give him as normal a childhood as possible. Celebrating the “moments’ that happen in a day rather than waiting for the perfect day or the perfect lab report. Adjusting your attitude to celebrate individual moments brings everything into perspective.
IBD is a marathon, not a sprint
Hope arises in new advances that are being researched every day in the cure and treatment of IBD. Hope is in the latest clinical trial that posted that includes children. Hope is watching my son with a fecal calprotectin of 2700 hit the ball to the outfield for a double.
Hope is in the simple things. As long as I have hope, I have the ability to change tomorrow for my son and for myself. We all do. You are not alone in this journey. I wish each and every IBD family peace, love, faith, and hope on their journeys.