This post is written by Natalie O’Reilly and crossposted from Hipmama.org.

I’m writing this today, not because I see myself as a political activist, but because our daughter lives with an on-going, critical need for healthcare, and because I want everyone to be able to put a face to the idea of healthcare reform. And what better face than our goofy, gorgeous, brave baby girl’s?

Anyone who has ever met my daughter knows that she is just about the most lovable and kind person ever born. But they probably don’t know about the struggles that she has faced, nor those that we have faced as a family because of her chronic condition. We’re pretty private about a lot of this stuff, because, well, it isn’t really anyone’s business but our own. But I feel like this is an important time for honesty.

We moved from Colorado to Tulsa in Spring, 2003. At that time Sophie was two years old, and was the healthiest kid that you had ever met. In the two years she lived in Colorado, she had one stomach virus and two colds. Within a month of moving to Tulsa, Sophie developed pneumonia. And then weeks after that, she had it again. And then weeks after that, she had it again. This was a frustrating time, but we weren’t too worried. We just kept going back to the doctor and getting more antibiotics and steroids. What would any parent do?

In fall of 2005, we decided to switch from our private, self-employment insurance that we had used for years to Blue Cross. There was a week-long gap between the policies – something that we didn’t think anything of, because we simply did not know better. Just as our Blue Cross plan was set to start, we received a notice from them stating that they considered Sophie to have a pre-existing pulmonary problem (due to the amount of doctor’s visits for pneumonia), and that while they would cover her in general, they wouldn’t cover any pulmonary/respiratory issues until she had gone two years without needing medication or having problems.

We were in shock.

All of a sudden, Sophie was without coverage for pulmonary problems. This was absolutely terrifying. What if she got sick?! What if she needed to be hospitalized?! We spent the next couple of months researching every insurance company that we could, begging them to take Sophie. Nope, it wasn’t going to happen.

And then our biggest fear came true: Sophie got very, very sick. And I’m ashamed to say that although we knew that she was incredibly ill, we actually considered keeping her home from the doctor’s office, as we knew that this would be yet another strike against her getting insurance.

Luckily we came to our senses and took her to the doctor anyway. It’s good that we did, because Sophie was so critically ill that she was sent straight from the doctor’s office to ICU. She was so sick that we couldn’t even wait for an ambulance – they helped me throw our limp, blue daughter into our car and I drove like hell to get her to the hospital next door.

Let me state that very clearly one more time: we almost didn’t take our baby girl, who was in severe respiratory distress, to the doctor because we knew that it would hurt her chances of getting insurance.

I’m going to ask you to sit for a moment and imagine being in our shoes in that situation. Imagine the shame and guilt of almost keeping your child home from the hospital until it was too late. Now imagine the horror of seeing your child naked in ICU, hooked up to a variety of machines. There is no way to describe how this felt.

One night in ICU? $10,000. Not covered by insurance.

After this hospitalization, we were approached by a hospital social worker, who suggested we apply for SoonerCare, Oklahoma’s Medicaid program for kids. Luckily I’m a social worker and was working for a non-profit at the time, so we had no problems meeting financial criteria. SoonerCare does NOT exclude kids for pre-existing conditions, and it covers Sophie’s medications and treatment 100%.

Since that horrible October in 2005, Sophie has needed hundreds of thousands of dollars worth of treatments, hospitalizations, surgeries, medications, testing, and interventions in order to stay strong and healthy, and in some instances, to stay alive.

She has required three bronchoscopies, the middle section of her lung removed, extensive genetic testing, cardiology work ups, dozens of x-rays, CT scans, and a two week trip to a pulmonary hospital in Denver. When she’s healthy, she requires three medications, twice a day, and when she’s sick she is usually on five medications, twice daily. She’s been diagnosed with right middle lobe syndrome (though not anymore, since she had it removed), a genetic mutation of cystic fibrosis, severe uncontrollable asthma, and severe sinus disease.

Since SoonerCare is the only insurance that will accept Sophie, we have to meet their financial criteria, which means living at or below the poverty level. I have had to quit wonderful jobs because I made too much money to qualify for SoonerCare. At this point I can only work either part-time, or for a very small salary, because we CANNOT afford to lose Sophie’s healthcare coverage. It’s the most important thing in our lives. We structure every single financial and professional decision we make around staying eligible for SoonerCare.

And while we’ll gladly continue to live at the poverty level in order to provide our daughter with the healthcare that keeps her alive, we SHOULDN’T HAVE TO. We would happily pay outrageous premiums and co-pays, and do whatever else it took to get Sophie covered by regular health insurance. But do you know what they all tell us?

She has to go two years with no pulmonary medications and no doctor’s visits because of respiratory problems before anyone will accept her. Sophie can’t go two DAYS without her medications, let alone two years. Her lungs continue to collapse spontaneously – how can she go two years without pulmonary treatments?

As I mentioned earlier, I simply want people to stop for a moment and realize that this issue strongly affects a little who didn’t ask for any of this, who didn’t “bring it on herself,” and who would give anything to get to live like a normal, healthy kid.

This problem is not going away for our family, or for the other families who are struggling terribly. It is only going to get more complicated.