My Guilt That I'm Not the Mom I Would Be If I Wasn't Sick


I love being a mom. Love it. I’ve always wanted to be a mom. I still remember watching “Angels in the Outfield” when I was young and saying afterwards that I wanted to be a foster or adoptive mom. Give me a whole slew of children and my life would be fulfilled.

Two weeks before I got sick, I randomly turned to my husband and asked him what his thoughts were on adoption. I told him that I’d love to have one or two more of our own, but there are so many kids in need of a home, and that I really wanted to adopt. The strange thing is, we had no way of knowing that I was about to get sick and not be healthy enough to get pregnant again and that if we wanted to grow our family, our option would be to adopt. I really do believe that that was God’s way of preparing our hearts for what was to come.

Along with dreaming of how big our family would one day be, I also thought a lot about what type of mom I wanted to be, how we would raise our kids, and all that went with the soccer mom life. I looked forward to being the hockey mom, going to piano recitals, and being a Girl Guide leader so that I could go on weekend camping trips with my daughter(s). Call me old-fashioned, but I loved the idea of having dinner on the table for my family, making lunches for them and carting my kiddos around with me in the minivan.

My life as a mom now looks significantly different. I won’t be able to do the super-early hockey practices as I now barely function in the mornings. Everyone who knows me may giggle at this, thinking it has to do with my severe coffee addiction (no really, can I hook it up to my Hickman line?) I start my day slinging my TPN backpack over my shoulder, grabbing my daughter Maddie (some days with my forearms if my arthritis is flaring up), I hobble down the stairs, change her and get her to her highchair quickly before I get too woozy. I get extremely lightheaded and have a hard time breathing first thing in the morning, what I assume is a consequence to having my lungs filled with fluid and then drained while at the hospital. The long days filled with piano recitals are a dream of the past, since leaving the house for more than a couple hours at a time leaves me incapacitated for at least the rest of the day. And going camping would mean not being able to find a sterile location to be able to get my TPN going.

Our daily routine at home really depends on how I feel. Hopefully we make it outside for half an hour — but never longer as it completely wipes me out. I can’t be that fun mom who plays with my daughter and chases her around. Even just helping her go down the slide a couple times takes everything out of me.

I don’t want to come off full of myself, but I know I’m a good mom. I’m not even close to perfect, but I love my daughter more than words could ever say and I do the best I can. I’ve really had to learn how to deal with my fears and guilt surrounding being a chronically ill mom. Guilt that she won’t get all the experiences I want her to because I can’t keep up. Guilt that she’ll get more TV time than I’d like because I don’t feel well enough to entertain her myself. Guilt that she doesn’t have the mom that she would have had if I hadn’t gotten sick. Fear that I’ll fall sick again and won’t be here to see her grow up. Fear that she will one day resent me because of all of this.

mom sitting on couch in front of young toddler daughter
Carmen and her daughter Maddie.

You can say all the encouraging words you want after reading this, hoping to uplift my spirits. But all you chronically ill parents out there 100 percent understand what I’m saying and I know I’m not alone in this. There’s so much fear of being judged for our parenting choices, the amount of parent-shaming out there is horrendous, but we’re all doing the best we can.

I feel like this post has been a little all over the place, very up and down emotionally. Welcome to my head space when it comes to parenting! I am my own worst critic. I am doing everything I am able to do, and sometimes more than I am capable (which I pay for for days to come). For those who are in the same boat — know you are not alone. I still struggle with my guilt and fears every day and I don’t know if they’ll ever go away, but I do know at least I’m not the only one going through it. You do what you have to do in the moment, and as long as it’s your best — really, who cares what others think. People who aren’t in our situation will never completely understand how hard this truly is.

I pray for my daughter every day, I thank God for her, and hope she turns out OK in spite of the obstacles we will have to face together. She’s the reason I’m here.

The Mighty is asking the following: Are you a mother with a disability or disease? What would you tell a new mother in your position? Check out our Submit a Story page for more about our submission guidelines.

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