Not Alone: Katy’s Story

By: Katy W.

I’ve grown up in St. Cloud since age 5. This is the community I’ve chosen to raise my kids in and the city I’ve chosen to be involved in. I chaired my neighborhood association, and have been involved in local politics, my church, and TakeAction Minnesota.

I’m also one of many people in our community who has had to make incredibly hard choices because of a sick family member and a system of care that wasn’t there for me and my family.

The first year my son was diagnosed with LCH, a cross between a cancer and a leukemia, I felt incredibly isolated and scared. I was a new mother with a sick 2-year-old. It was overwhelming. I had a 6-week-old baby and a 2-year-old who was projectile vomiting like The Exorcist. It wasn’t just overwhelming. It was one of the worst times in my life.

We got access to medical assistance through the county and state, but we still struggled to make ends meet. Going from two incomes to one makes a huge difference when you are choosing between gas to get to work or fresh apples at the market or diapers. It’s hard to make ends meet and not end up homeless because you didn’t pay rent. 

On the flip side, if you have a serious medical issue and you have money, you risk losing your home, your 401k, and everything you worked so hard for. It disappears so quickly, as though all those years of hard work meant nothing. 

As a mom, I sacrificed for my family by staying home and missing out on career opportunities. Moms, grandmothers, and daughters—we often sacrifice our health so that we can do just one more thing when we should be saying no.  As a caregiver, I sacrifice my well-being because of a lack of resources and options, but I have to keep pushing on. There is no time to pause and care for myself.

I am self-employed. Like other small business owners and farmers, I have no health insurance. We are one health problem away from losing it all.

My family makes too much money to get access to MinnesotaCare, but we make too little money to afford private insurance through my husband’s job. Even with my income we couldn’t afford the treatment my family needs. This is the most isolating part of having to take care of sick family members: the worry about not having enough, about never having enough.

The ONECare buy-in option could change my family’s life, and it would bring me some security and peace of mind.

Now that my son is healthy, I am able to work and make enough money to put food on the table, but I am always worried about losing his health care.

My son has a rare disease. He is not considered disabled but needs constant follow-up to ensure he doesn’t relapse. At 10 years old, he has already had cancer in his bone, skin, and pituitary gland, causing inflammation in his brain. He’s had multiple rounds of chemotherapy and skin radiation. Today he is around two years out from his last round of chemotherapy, but he is at a high risk of relapse and needs access to medical treatment.

I’m terrified that health care might not be there when we need it.  

A healthy kid means not only my peace of mind, but it also means clothing that fits, good shoes, and food for my kids. There should be no child, no parent, no human being that goes without medical care, food, or housing.

Those in power have us all believing there is not enough and that we have to fight over scraps. I know better. I know we have enough for us all to thrive.

I‘ve spent a good deal of time being alone and struggling to take care of the ones I love, and it makes me feel like I’ve lost my humanity. By sharing my story, I’m healing not only myself, but also my community of moms who struggle to get care for their family members.

I am done fighting for scraps. We deserve affordable, accessible health care. The current system isn’t working for my family. And I know I’m not alone.

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We all have a health care story, because health care is a basic, fundamental need. This is part of a weekly series during Minnesota’s legislative session where we share the health care stories of Minnesotans like you. Share your story here.