Coping | IBD
It’s nights like last, where I am constantly reminded that I am a mother to a child that is chronically ill. We make huge strides only to be kicked down at our knees, leaving us at the bottom of the battle once again. ”Brush those skinny little knees off, stand up and push forward. Keep the sun shining on your boney little shoulders and baby, we will find our way. We must stay the course and not let the darkness blind our path.”
I keep these little mantras going in my head and hers constantly. Of course there are days when we feel all is lost and we have used all of our resources, but we have only just begun.
I never dreamt that I would quickly fall into the role of being my child’s advocate, for all the most difficult reasons. Fighting for her health and well being, fighting for her to have a normal childhood, any kind of normalcy is all we wanted. This would prove to be much harder than I could have ever imagined; the rabbit holes of waiting rooms, the explanation of her symptoms, over and over, only to have the doctors staring blankly back at me, the countless blood draws, the fighting to find better medical attention, rummaging through an over packed backpack praying I packed a pair of back up clothes to the back up clothes we already changed her into from an earlier accident, the sleepless nights on the internet trying to find that one missing link that would be my “ah ha” moment, all while trying to raise a healthy son and holding on to my marriage. It would take years and six thousand miles away from our little island home until a diagnosis would present itself. Just shy of her third birthday, Iris Ann, was diagnosed with Crohn’s Disease.
I remember feeling relieved. We could now start the healing process! A process in which I had no idea would be so grueling. I was scared, but determined. We started her on a biologic. Sinus infections soon became the norm. Her eczema had returned in full force. Her body was so frail and weak. She was not growing and quite frankly looked worse than she ever had. After six months of this mess, I put my big girl panties on and told the doctor we were done. We could no longer use this medication as it was making her so sick. We needed a plan B and I wanted it before we left the office. “Our next step is to remove her colon.” This was coming from a GI who never once looked at her scopes that had previously been done at a children’s hospital on the east coast. “Remove her colon?” My jaw was on the floor. “There is no time to waste. Next week.” He replied. I was shocked. Furious. Seeing red. “Breath Stacey”. Deep breathes I kept telling myself. I calmed myself down and asked about gut rest. (I read about it on the internet. Why was this not a plan B?) His reply, “okay, great idea, we will start her on liquid therapy.” To say I was floored would be an understatement.
We had a tube set and the next leg of our journey began. The tube feeds would buy me time. I quickly went to work. I had to get her off this island and into the arms of some one willing to fight for her as hard as we were. I put together a portfolio of the hospital I wanted a referral to and presented it to her pediatrician. She got the GI on board and together they placed the referral. Our insurance company denied us the next day. Resubmitted it. Denied. Again. Denied. Again. Denied. I was so scared, but determined. At this point, Iris had completely lost her ability to walk. She was disappearing. She was a shell of what she once was. “Don’t worry mom, you’re going to fix me.” She would say this when I could hide everything except the emotions she could read through my worried eyes. I remember taking multiple showers a day just so I could cry. I’d look in the mirror at the face staring back at me and say stay the course. Stay the course.
After four months of being denied the care we so desperately needed we were approved and on a plane three days later! Once at the hospital, I met her team and they wasted not a single second. The colonoscopy revealed very active Crohn’s, but nowhere near the point of removing her colon. Thank god! We did extensive nutritional therapy and began her on a new biologic. (I did not want to take that route again, but I had to trust the process. I just had too.) We stayed at the hospital for three months. Two weeks in patient and two and a half months at the Ronald McDonald House. One morning Iris woke up and said “Mom the sickness is gone!!” We were able to reach remission for a long blissful 8 months with not a single hiccup. She was able to attend a full year of preschool where she thrived so beautifully!
But, Crohn’s is tricky. Likes to give you subtle reminders that it has not gone anywhere and sometimes it’s not so kind. Knocking you down at your knees leaving you back at the bottom. There are no two days alike. The healthy days are not guaranteed, but on the days that are close, we celebrate! My job is to teach her as much as I can about this disease. This is is the life she has to learn to navigate and as long as I am by her side I will teach her as much as I can. We discuss the importance of whole food nutrition. We exercise and talk about the mind, body and soul connection. I include her in every doctor visit and I always make sure the doctors speak to her and not me particularly. I mean she is the patient right?
I want to take a moment to high five and hug every single one of you who are battling this disease or if you are caring for someone else. It changes us forever. I am so thankful to the Crohn’s community that has taken my hand, guided me, and kept me on course. The long talks, the laughter, the ugly cries and the silent rays of light that shine ever so brightly on Iris and my family have been nothing shy of brilliant. I started an Instagram account, @thegutsymom, to share our journey. It has been a great place to connect and reflect with others struggling with Crohn’s and other autoimmune disorders. Not even sure I could have been this brave without the support from every corner of the globe. So, here’s to you moms! Between tube feedings, bag changes, breakfast, lunch and dinner. Between bathroom sessions, injections and IV’s, give yourself a hallelujah! You are making it happen. Stay the course.
Stacey Haines is a wife and mother of two living in Kapaa, Hawaii. She is a Certified Integrative Health Coach and stay at home mom. Stacey’s daughter Iris Ann was diagnosed with Crohn’s disease right before her third birthday. Stacey’s instagram, @thegutsymom, documents her life as a momma to a Crohnie!