Caring for IBD While Caring for Your Family
It's been one of those days as a mom with Crohn's disease. It's not even noon and I've had to pause while feeding my son, put him in the Rock N' Play and drag him into the bathroom multiple times. A little TV timeout, if you will. I always wait until the last possible moment to do this, feeling the guilt of making my son stop eating, all so I can make another trip to the bathroom.
He's almost nine months and has yet to cry when I do this. It's almost like he knows I'm trying so hard and doing my best. Rather than get upset when I pull the bottle from his mouth and drag him in a frenzy down the hall, he smiles and stares at me intently.
These are the moments where I pause and think, one day, I'll tell him
I'll tell him about the early days of being a mom and taking on Crohn's with him on my hip. When you're home alone with your baby and there's no one to turn to, there are countless moments where you have to muster up strength and pull it together, even when you feel like you're falling apart on the inside.
Today I talked to my son like he knew what I was saying. I apologized for the bathroom break and let him know that mommy has a disease that makes her go to the bathroom and gives her some pain. I also told him how I hope and pray he never has to succumb to this illness. Give me all the flare ups, keep my little boy healthy...please.
Just like life has different chapters and stages, so does our disease journey.
No matter what age you are diagnosed, you will notice how each experience along the way alters your perception and changes your course. Each decision you make, whether it's what medication to start taking or whether that friend who didn't contact you while you were hospitalized, is really worth your time. It's important to recognize that just like inflammatory bowel disease will always be a part of you (until there's a cure!)...your family will always be a part of you, too.
They are your safe haven. They witness your strength day in and day out. Just because they don't say it, doesn't meant they aren't inspired by your ability to carry on with a smile, despite the pain you are encountering. As my son gets older, he will be able to articulate what it's like to have a parent who has a chronic, invisible illness. Sure, I'll probably hide a lot from him. But, I will also be honest.
It's all what you make of it.
If you choose to take your disease and use it to empower others, you'll find in doing so you empower yourself, too. I know this is far from the last time I'll have to take my son on a little joyride mid-feeding, but something tells me he gets it. He knows I'm doing my best, and he loves me for it. Looking in his eyes is all the inspiration I need to take on each day and be stronger than the last.
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