My Daughter Needs Medicaid, We Are Holding Our Breath


She sleeps without a care in a world. In an hour, she will get up, test her pee, take her pills and start bugging me to go swim. My 8-year-old daughter had a kidney transplant almost three years ago. Her responsibilities for now include drinking enough water and helping Daddy put her pills in the case. In just nine more years, she’ll be in charge of managing her own healthcare and that terrifies me. I’m awake at 7 am, drinking coffee, reading the paper and watching the news — waiting to see what’s going to happen with the healthcare bill — and hoping she never has to sit and watch the news to find out her financial future.

The year before Lexi was born, we lived in this crap hole apartment with a neighbor who always asked for a ride to West End to, “get his mother’s medicine.” There is not a single pharmacy in this part of town. He did a lot of crack and I wouldn’t let him in my car. I lost my job because I didn’t have health care to get a doctor’s note for being sick. We went on food stamps and I went to 100 interviews but no one would hire me and my belly. I couldn’t even get a minimum wage job at Dairy Queen.

We worked our butts off over the years to climb out of it. I finally got a job a month after my second daughter was born and we moved before I had our youngest, the transplant kiddo. Not having enough money for groceries is a position I never want to be in ever again, and if we’d had health insurance we never would have ended up there.

When Lexi had her transplant, we paid a $950 copay for her first month’s medications and then she finally got approved for Medicaid in addition to our regular insurance. I wish I was exaggerating when I say it has saved us over a million dollars. We meet our deductible by February every year. Losing Lexi’s Medicaid would be quite the hit.

But I have to sit and watch a group of privileged Americans decide my family’s financial future. We will not go back to poverty. I wish we had decision makers who had actually experienced something in life that the regular American does. They have no right to be making such thoughtless decisions for my sleeping 8-year-old’s preexisting condition.

Beautiful girl, I hope you never have to worry about how you will pay for the medications that keep you alive.

Don’t cut Medicaid.

Is this the “American Dream” we worked so hard for?

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by Creatas Images


Find this story helpful? Share it with someone you care about.


Related to General Parenting

Dear Teachers, Here's How You Can Help My Kid Avoid or Cope With Meltdowns

I don’t know about you, but there have been times when my kids work so hard at “keeping it together” at school, that by the time they come home they are not feeling regulated. Also, home is safe, and home is where you can finally show what you are feeling inside. A loud noise can tip off [...]

My Life as a Parent of a Child With a Disability Is Like the Movie, 'The Matrix'

I often wonder to myself if others are wondering what my life is like. When I’m at the grocery store and observe a concerned stare at my son’s abnormal breathing pattern, or when people innocently inquire about his age and their face betrays them with a hint confusion as to why he isn’t running the [...]

4 Tips to Gain the Maximum Educational Benefit for Children With Disabilities

Recently, my wife and I were invited to speak at a “Family Retreat Weekend” in Austin, Texas, sponsored by the Texas School for the Deaf (TSD). Specifically, we were asked to speak to parents about our experiences as the parents of a deaf child who has additional needs. We titled our discussion, “The Importance of [...]

15 Ways to Help Your Child With Disabilities Transition Back to School

The beginning of a new school year makes me anxious, but not as anxious as it makes my children, who have disabilities. I worry about the teachers. I worry about friendships. I worry about all that is included in the IEP because, will it be followed? My kids worry about the new classroom, the new [...]