Being in control. Knowing what tomorrow brings. Understanding why. Unfortunately, when it comes to inflammatory bowel disease, we don’t have those abilities or those answers. This week, a guest blog from a California mom of six girls named Cait. Her 13-year-old daughter, Natalie, was recently diagnosed with Crohn’s disease. I connected with Cait on Instagram and look up to her as a mom who’s trying to navigate her daughter and her family’s new normal.
As a mom, I always want to have the answer or know just the right thing to do to help my kids along their own path. So, when all of that seemed to crash around us in May I felt lost. I felt alone. I didn’t know which way was up. This wasn’t in my plan nor did I wish for Natalie to journey it.
But here we were. Months and months of tests and researching late at night on my phone. Was it a tummy bug? Was it a parasite? Was it a food allergy surfacing? Mono? So many questions and not enough answers. The one test we all felt Natalie needed, our insurance denied us.
We could not keep watching our precious daughter fade. Something was terribly wrong. When we saw her doctor one last time in hopes of finally knowing a reason, it was still unclear and we all decided it was best to go to the Children’s hospital so this could finally be resolved.
Long nights, early mornings, no sleep, tests after tests and the same questions asked over and over again. It was exhausting. I have never felt so helpless. I tried to stay strong, encouraging her, supporting her, talking to the doctors and being by her side while my husband and both sides of our families cared for our five other daughters. Our family came to visit as much as possible, but the drive was far. I sat alone with Natalie when she went for her first scope. I sat alone with the doctor and received the awful news. But I was somehow relieved in those early moments. We finally had a name for what we were dealing with. Crohn’s disease. We now had a team of people who wanted to help us manage and get her disease under control. Such relief to no longer feel alone.
There have been hard days, and really hard days and then days it seems nothing ever really happened. And although we are so new to all of this, there are some things I have been learning along the way.
It’s ok to cry with them. They need to know they are not alone. I tried to stay strong, but being able to weep with her was soothing for both of us.
Keep the lines of communication open even when they are hurting and may say they don’t. Those thoughts and emotions have to be worked through. This is a tough diagnosis.
Find ways to laugh. In the hospital everything was so depressing for us. So when we got the results we made a Snapchat video to share it with everyone. Somehow it lightened the mood and helped us embrace our new reality.
Soak up these moments of bonding even though we all know we would rather bond over coffee dates and shopping trips and not hospital stays and long trips to see her specialist.
Do research and don’t be afraid to go with your gut (no pun intended). You know your son/daughter better than anyone else. Respect the doctors, but don’t be afraid to ask questions and have a voice in their treatment. You are your child’s best advocate.
My biggest encouragement is this, stop looking back. As a mom I want to turn back time. I want to fix it somehow. I want to change it all. Looking back only brings unnecessary guilt, sadness and regret.
Look forward. Find things to be thankful for. Do your best to give them the brightest future and speak life over them. Cherish every moment. And help them plan their future–which can be as bright as any other child.
To follow Cait and her family’s journey, check out her blog.