The alarms on my phone go off, reminding me of the adventure planned for the day. A nice subway ride to the museums with lunch at the new Harry Potter cafe downtown. He’s been looking forward to it for weeks. His NASA space suit is all laid out for the Apollo 11 exhibit, his wallet is stuffed with allowance for astronaut ice cream treats, and his favorite Hogwarts t-shirt is ready for later in the day. He has never been on a subway, and the excitement brewing around the mystery of the train is almost overwhelming for him. He has charged all of his devices and external batteries. The backpack is packed with comfortable earbuds, as well as new books from the library to read on the way and, later, over butterbeer-inspired decaf lattes.
The alarm continues to go off. But I cannot stop it, I cannot reach it. It’s on my nightstand, in my darkened room. I am several feet away, in the bathroom. My third trip since midnight. Now the sun is rising, and I knew that a change in plans needed to be made.
But how would I tell my little astronaut?
Chronic Illness Brings a Different Type of Mom Guilt
The simple act of making plans is not a luxury I have been afforded since inflammatory bowel (IBD) disease developed in my body. The weight of the mom guilt is overwhelming as I feel that most of my time is spent telling my child, “No, not today.” Some mothers have big dreams and hopes for their children. I only wish my child had a healthy mother.
What kind of childhood am I giving him? For the first few years of my child’s life, I complained internally about my shortcomings as a mother. I watched the other mothers in my mom group make plans and stick to them, while I took my motherhood moment by moment. When my child turned 2, I found myself in a ball of tears on the bathroom floor, crying to my mother. I felt so guilty for laying this tremendous burden on an innocent child. My mother said something that has stuck with me and carried me through my moments of self-pity. She said, “Every mother feels guilty about something. Every mother has something that weighs them down, burdens them, or makes them feel inadequate. When you feel like you aren’t doing enough, more than likely you are doing too much! You are doing alright. But for a mother with challenges, you are doing amazing!”
These words are so easy to say and comforting every now and again. But how do you live through the guilt that comes in waves when IBD is taking over your life?
Here are four basic rules I have for myself.
- Get Enough RestI find that most of my guilt comes when I am not feeling well. The anxiety that arises from not getting things done, feeling lazy for lying down, or guilty for having to modify plans because of my illness. I have to consciously give myself a break. All moms get sick. All moms deserve a break. All moms need to rest. I am no different. The sooner I rest and recover, the faster I can get back to living my life.
- No Parent Can Provide Every OpportunityWhen I look back on my own childhood with my healthy parents, I don’t remember having days packed with activities every week. It’s perfectly okay to not do all of the things. It’s okay to pick and choose. It’s okay to say no. Not because you’re sick, but because it’s just not necessary. And sure, we tend to overcompensate with our families. Adding more activities or adventures because moments of being well are a bit more precious.For me, almost losing my life from severe complications from ulcerative colitis made me feel that every single moment was critical. So I began to pack every single moment with something to share with my child. I oversaturated our lives and overworked my body, trying to run against an invisible clock I started on myself, out of fear. I forgot that my child just needs me. Sometimes being home, with a blanket and a movie is enough for him. Because it’s in those quiet moments that he has his mommy’s full attention.
- Communicate With Loved OnesWhen I am tired, my brain will overwork. I think and think and overthink those thoughts and think some more. It’s in those moments of rumination that guilt will bubble over. Perhaps no one around me feels slighted or disappointed because of the modifications to plans. Whereas in my mind, everyone is miserable and angry with me for once again ruining their life. I check in with my family and see how they feel. We’ve got a forum where each member can voice their frustrations, ask their questions, and give suggestions. IBD is not something you can carry on your own. It does affect the entire family in some way, and so open communication about it may help lift some of the weight from you.
- Parenthood Is Hard for Everyone! You’re Doing Amazing!That’s it! That’s all, you’re doing a fantastic job. In or out of a flare, you’re making it happen!