Meatless Fajitas

We hit our family deductible 7 days into our new insurance plan. We have medical bills galore. Rare disease means our kids are seen twice as often by each of their doctors. Each doctor requires their own labs drawn, and diagnostic tests run. For a time, after he turned one, Dru was on a special formula that was a complete nutritional drink packed with vitamins, minerals, and protein–but without the leucine. It was also completely expensive. Luckily he qualified for Children’s Special Health Services because his inborn error of metabolism was a disorder picked up on the newborn screen. They were amazing. They helped pay for specialist visits, diagnostic testing, and certain medical foods like the formula. Dru also had other resources that helped us tremendously. He had an occupational therapist work with him every single week until he turned three to monitor his development and make sure he was staying on track.

Things have been politically heated around the issue of health care as long as I can remember. There have been countless occasions that I have scrolled through social media and seen people post opinions about health care. Over and over I have seen people post that they believe anyone who receives benefits from the government, benefits that they have done no work to receive, is lazy, is everything that is wrong with this country, and should get off their butts and get to work. Every time I feel a little shame inside. Surely they wouldn’t say that to my face. In fact, they have told me to my face how brave we are, how overwhelming it must be to find your child has a rare disease, and yet I sit there alone I feel ashamed that we have received medical help from a government program.

I wonder to myself if they would accept the help to pay for the $250 canister of formula, or if they would “stop being lazy” and pay for it themselves. Would they put their medically fragile child in daycare after being warned by doctors that the exposure to illness in such a setting would not be advised? I am grateful there is help out there. I would much prefer to be a family that rarely meets their deductable, that doesn’t pay hundreds of dollars a year in copays alone, but that isn’t our choice. I’m grateful for programs that look out for my kids and recognize their special health care needs.

An amazing friend of mine posted this video:

This video touched me deeply. The adults in the video did not have the resources and/or support to follow the necessary PKU diet for life. After watching this I couldn’t stop thinking about how inhumane it is to deprive people of medically necessary care/resources. With medical care and resources, those sweet kids thrive. Without it, their lives and their potential suffer.

Just last month I asked a doctor if Estella needed to be seen again so soon. I asked solely because it is so expensive to go in, have labs drawn, tests run, new issues referred to new specialists, etc. They, of course, responded that it was our choice, but they would recommend it. I quickly came to my senses and recognized that money shouldn’t be the reason my daughter doesn’t receive an opportunity to receive the care she needs. But for a brief moment, the cost of healthcare seemed so overwhelming I wondered if there was a way we could skip just one appointment, just one bill.

I am lucky. Although we do our best to be completely self-sufficient, I have my parents to fall back on. I know in the back of my mind that my children will never have to go without the medical care they need because we have a support system that would make sure they were taken care of. Most others that I know are not so lucky.

About a year ago I attended a “day-out” for mothers with children who have disabilities or increased medical needs.  We had a small group discussion in different rooms. It was so therapeutic. The discussion ranged from how to not be jealous of others with healthy families, to how to not be ashamed of receiving help. A woman told her story of fostering 3 children with severe disabilities and medical needs, she eventually adopted them as her own. Shortly after the adoption, her husband left and she was stranded without support or money. Childcare was somewhat out of the question when you compared the cost to what she could make working out of the home. She signed up for food stamps and Medicaid to help her family survive this rough spell. She tearfully recounted a day when her parents watched her children and let her use their car to go pick up groceries. She tearfully recounted how much shame she felt checking out with her food benefits and walking up to her parent’s nice car. She said her skin burned red as people around her watched her load her groceries into that nice vehicle. The woman behind her during checkout walked passed her loading her groceries into the car and under her breath, but just loudly enough to be heard clearly said, “freeloader.” She wept as she drove the car that wasn’t hers back to her home. I thought that was so powerful. We simply don’t know what is happening in the lives of those around us. Government programs are misused and overused, but meeting this woman and hearing her story, it’s easy for me to feel nothing but admiration and understanding.

I’m not writing to spark a debate, or even to convince anyone to change their views on healthcare, I’m simply writing to say we are grateful that there has been help along the way.

Whew! It feels good to get that out of my head. And now I’m not sure how to segway into this… Meatless Fajitas!! They are delicious. We eat them at least once a week, yum!




  1. by Sarah Beck on August 28, 2017  3:16 am Reply

    Love this post! I can't even imagine how much it costs to give your family the health care they need. J has been a recipient of early intervention and speech and OT and I am SO grateful for the help he recieved through taxpayer dollars. As grad students we had no money to begin with and our student health care insurance through the university wouldn't come close to covering the speech therapy sessions and OT J needed multiple times a week. It is humbling. But at the same time I know J wouldn't be where he's at today without it and I am really grateful for that too!

    • by Lauren Parker on August 29, 2017  4:24 am Reply

      I couldn't ever give enough praise to early intervention! It really is an incredibly helpful program. It's hard to imagine surviving Dru's early years without the people we met through EI and the resources and knowledge they brought to us.

  2. by Beth Schaible on August 28, 2017  3:48 am Reply

    We can never know what others are going through until we walk a mile in there shoes. We need to not be so quick to judge! Thanks for posting. Sorry there are not some of the same benefits there for you as there are here.

    • by Lauren Parker on August 29, 2017  4:14 am Reply

      I bet your job gives you a really personal glimpse into just how much is going on behind the scenes in people's lives! Thanks for reading, Beth. I finally was able to get a referral to early intervention--they are coming out tomorrow! I'm crossing my fingers they will approve her case.

  3. by Ricki Martin on August 28, 2017  1:41 pm Reply

    Thanks Lauren- you are spot on! I also am frustrated with the health care system- I am currently working with someone on the other end of the spectrum- an elderly lady with degerative hip disease- in just a few short weeks she has gone from living in an assisted living apartment with her favorite antiques and beautiful quilts on the walls to a shared tiny room with no room for anything personal. Her son's just sold all her belongings so she could qualify for Medicaid to pay for her increased care. She now only gets to keep $40 a month out of her retirement pension and social security. Not even enough money to pay for her to have her own telephone. All because the welfare and healthcare system is so messed up. She's grateful for the program, but it's hard to give up all your belongs and independence so you can have the care you need. It's a broken system and people looking from the outside in have no idea. I'm so glad there are programs to help! I love your updates.

    • by Lauren Parker on August 29, 2017  4:11 am Reply

      Oh boy. That must be incredibly frustrating to watch... Everyone's experience with healthcare is so unique, it's hard to see how it can all be "fixed" for everyone. (Side note: we are coming home in Oct. you need to meet Estella!!)

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