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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 ‚ÄĒ 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 ‚ÄĒ 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 ‚ÄĒ 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.

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