What I Wish I'd Found When We Googled 'Intestinal Failure'

When the surgeon came out of the OR after having been in there with our newborn son for several hours, he told us the super rare disease he had said not to worry about was now our new reality. He had confirmed the intestinal failure diagnosis with biopsies mid-surgery and had just stepped out to give us the news before returning to finish the operation.

I remember looking around at our immediate family. I remember watching them all pull out their smartphones and start to Google the name of that rare condition. We all wanted more — more information, more insight as to how this happened and most of all, how we could fix it.

I wish when we had all Googled his condition we had found real life stories of families’ experiences with the disease instead of medical journals. I wish we would have found something that spoke to the emotional side of this disease — the anxiety and worry and awareness of the fragility of life — that my young son would soon have. I wish it would have told us he will have dozens of surgeries and procedures over his lifetime and that because he is so rare, many of these surgeries will be innovative and new for his medical team. I wish I would have seen articles about what it’s really like to be a full-time mom and nurse to a child with a rare chronic illness. I wish I would have seen photographs of happy children laughing and playing instead of the images in my mind of our beautiful sick baby with tubes and wires all over him. I wish I could have Googled how many friends and family members we would have pull away from us over the years as they grew weary of our son’s journey. I wish I could have Googled cases as rare as our son — so rare and complex that he will be affected severely by his disease for his entire life — instead of the cases we read about being “cured” after one or two surgeries and only a few weeks of treatment.

I wish I could have Googled how difficult this journey would be, about the nights I would spend in tears searching for interventions and ways to help our son, about the worry I would have and the hope I had for him to live a happy, fulfilled life. I wish we could have found articles about the effects of chronic illness on siblings, and I wish we could have known how strong their bond would be — how protective his younger brothers would be of him and how they would be the absolute best of friends. I wish we could have found articles about the advocacy role we would have to take on, about the phone calls and letters we would write, about the barriers we would need to help break for our son as he grows. I wish I could have found articles about my broken heart and how it would slowly start to heal over time, that it would never ever get easier to watch my son in pain but that I would learn to cope and appreciate each milestone big and small.

I wish I would have seen articles about how incredible, strong and brilliant my son would be despite all of these hurdles and challenges that he would have to face in his lifetime. I wish I would have been able to read about how lucky we were in so many ways because we were going to learn a lifetime of lessons from our son and his siblings and have a deeper love and appreciation for them than we could have ever dreamed. 

I wish I would have been able to find something that would have told me that we would be OK, that he would be ok… that in spite of the lifelong battle we were beginning to fight we would come through stronger, more resilient and more in love with each other and our children than I could have ever imagined. 

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.