The 'Mommy Guilt Syndrome' That Pressures Parents With Chronic Illness

The hardest thing I had to deal with as a result of my chronic illness — this question resonated with me very quickly. I had a good cry about it last night and will probably have a bunch more in the next 30 years. For me it is motherhood. There is so much pressure today to be a perfect parent and for some reason the Mommy Guilt syndrome is out of control.

When I was created, women drank and smoked their way through pregnancies. Today, we have to look like Christie Brinkley (she is 62 and I couldn’t achieve that at 30), work at an amazing career, be Martha Stewart, have our kids in 17 afterschool activities, know how to teach the Common Core curriculum that even many of their teachers do not understand, cook organic, non–GMO, gluten- and cruelty-free meals and go to spin class every day. This is a lot to live up to, and then add in the roller coaster of chronic illness with its unrelenting cruelty and spontaneity, and I just want to give up sometimes.

But I don’t and you won’t either. There are some difficult days. When my girls ask if we can go to the mall and I know that my legs are not willing to walk the long, fashionable marble corridors, the guilt sneaks in. When we plan a vacation to Disney and I am filtering everything through the chronic illness lens of will it be too hot? How hard will it be to navigate my scooter? How short will I have to cut my once 12-hour long Disney days down to? All of these questions and filters that were never a second thought four years ago, shadow my every excursion and parental obligation. Halloween has become my husband’s gig since walking more than a quarter mile becomes very awkward and painful. I know my girls love me, but when their mom looks like a character from “The Walking Dead” and is crooked and dragging her feet, it wears them down, too. That damn chronic illness filter — it makes being a “perfect” mom impossible.

Then I worry about my legacy. When my girls reflect back on me, how will they describe me? Will it be that I made the best “Pasta–Fazool” ever or that I was strong and fearless, or will it be that I was always sick? Will these four years of struggle take over all of the other amazing memories of countless play dates, aquariums, beach days and vacation and adventures? No. I will not let it. I will not let this illness define me for them. I will not let them box me up into a sick package and unpack with me sadness and regret. I will fight everyday to make it about quality and not quantity of time spent. My days in bed will be times that we snuggle, watch B movies and let the warp-speeding world pass us by. We will be the imperfectly perfect example of non-compliance of perfection. My daughters and I will make beans and macaroni together and that will be special. Instead of the girls taking my cooking for granted, they will appreciate it even more because they will have it less. Yes, I will order more takeout but they will survive on Chinese food and pizza. How did prior civilizations survive on just potatoes, rice and water? They just did. They were grateful.

There is the answer for us all and it is so simple and so sweet — gratitude. This is how you conquer this chronic illness guilt with your children, whether you are a mom or a dad. Teach each other gratitude. Re-instill that the little things in life are so very important. You just being there is something to celebrate. Give them that gift of presence. Each moment you spend with them does not need to look like a scripted scene of perfection out of a Lifetime family movie. In all honesty, they just want you — cane, limping, hurting, shaking, twisted or in bed, they just want you.

So to hell with the unbearable Mommy or Daddy guilt. To hell with perfection. My legacy will be one of strength. I will teach them to be grateful for the small stuff. To end each day reciting three things they are grateful for. Then I will put my money where my mouth is and tell them three things I am grateful for. They may be small. The list may sound like this: “breathing, take-out and television,” but it will be gratitude and with that they will see strength.

That will be my legacy one day I pray. When my daughters look back they will not unpack me from a box of sickness; instead it will be a box of strength filled with memories of resilience and snuggling and laughter. They will say I was a fighter and taught them to be both vulnerable yet strong. I am not saying that there will not be more days of tears and feeling like I am failing. But I will continue to fight that narrow definition of what a mother should be. That crazy definition of perfection will be challenged when I fight my way back and find myself. When I find that it is OK to be sick, that it does not define me and that my girls are grateful for every minute that have with me, ragged, limping, not showered and delirious from too much television — but still me, their mother. Still here and fighting.