Living with a chronic illness causes you to become painfully aware of your good days and your bad days. It causes you to understand that “good health” or “normal health” is never something to be taken for granted. On the days I feel “healthy”, which for me is far from truly healthy.. but for my baseline of normalcy, I do what I can to take advantage of that time, especially when it comes to my presence with my children. Everyday I try to savor the minutes I feel well enough to do activities with the kids; but I struggle. I struggle to find the balance of being the best mother I can be, while dealing with a chronic illness. I struggle to accept the mother I have to be versus the mother I want to be.
Every minute of everyday I am striving to do whatever I can to be present for my kids, to be the mother I want to be. Yet, despite everything I am doing, I have to succumb to the downward slope of my health. One minute I am standing at the top of the highest mountain, and the next, I am rolling down the slope with zero control. I continue to try to stop rolling down with every force I can muster, but it is never enough. I must give in and let myself reach the bottom, so I can work my way back up to the top.
This is what it is like living with Crohn’s Disease. To be more general, any chronic illness. You fight and fight your way against the gravity that is forcing you down that mountain until you can’t fight anymore. All the while, my kids have to watch as mommy rolls down that hill as my oldest, Bradley, comforts me, waiting for me to feel better so I can resume being the mother he knows and wants there for him. He sees me struggling and asks me if my tummy is feeling any better? I have to explain myself to him so he can understand that mommy has something in her body that makes her tummy sick and it isn’t going to go away, some days I will feel okay, but some days I will be sick. His response is usually the same. He looks at me making an angry face and says “I’m just so frustrated that you don’t feel better. You go to the doctors and you make a better face but then you get sick again.”
All of the kids are young yet, and for them they have grown accustomed to mommy being sick. Having to abruptly leave places so I can get to a bathroom quickly. Bradley having to care for the 2 younger children because I am stuck in the bathroom. Having emesis bags around the house because without notice I start getting sick. Never actually having a holiday on the correct day because mommy is in the hospital. Frequent trips to the doctors office for blood work. This has all become “normal” for the kids.
The kids are young. They can’t understand the frustration and aggravation that I feel that I am unable to be the mother I want to be some days. They can’t understand how it breaks my heart they have to miss out on fun activities because my body won’t allow me to be away from a bathroom long enough. They don’t realize that it breaks my heart when they ask me to play a certain way and I simply can’t because I have to just lay down.
The other day, my dad so sweetly asked if he and my mom could take Bradley to the zoo for a fun day trip. I expressed how I wanted all of us to go, so I could experience this with him too. He quickly brought me to the realization that it would be very far from a bathroom while walking the zoo and that I may end up in too much pain to continue walking the zoo. This brings me to tears. I feel I am constantly missing out of important moments of the kids growth because of this disease. I’ve missed my daughter walking, my son’s first loose tooth, countless holidays, this list goes on. I am filled with guilt on a daily basis. It’s not fair to the kids that they miss out on things because I can’t partake. It is so selfish of me to keep them from doing activities because I can’t be part of it, but I am angry, that I have to miss these moments because of Crohn’s.
Balancing motherhood with my disease is hard. It is the hardest thing I have had to do. Parenting in general is difficult enough. I hope one day my kids will understand. I hope they understand that mommy did the best I could. I hope one day look back and recognize all the sacrifices I make as a mother battling a chronic illness. I hope they can see how hard I fight everyday to be there for them, to hold them, to love them, to give them everything I can muster. For now, that’s all I hope, and it’s that hope that keeps me fighting everyday to get back to the top of the mountain.