So yes today has been an uproar about Obamacare. All across America and Facebook the debates rage on. Socialization of Medicine in America? Reform? Care for all? PLEASE hear me out. I do not claim to be a liberal… by ANY stretch of the imagination. WHO I voted for the last election or the next election is really irrelevant to my experiences with medicine in America. But here goes. Less than a year ago our family faced yet another crisis. The Explanation of Benefits came and there was the number in black and white. Kyleigh had MAXED out our maximum lifetime spending limit for our entire FAMILY in just 4 short years. Devastation. Now, because of her issues, our other kids and ourselves even would be completely uninsured within a matter of a month’s time. I panicked. Troy started rallying the troops to see what they could do about this within his company, called HR, talked around in circles.
Then the ruling came down. Obamacare would remove the lifetime spending caps, and remove all “pre-existing” clauses. It was a welcome relief. It was a life saver, literally. If my child were to become un-insured here is what her life would look like:
No money for the $3000+ per month to feed her- she would starve to death
No money for the $900 a month in cathing supplies- her kidneys would eventually fail but it wouldn’t matter because we would not be able to afford dialysis or a transplant.
No money for the regular testing and office visits that come in multiples each month. She would likely end up in multiple organ system shut down.
No money for meds that keep her out of pain and make her body function correctly. We would watch our child DIE slowly and she would be in PAIN the whole way.
But as parents we would never allow that to happen. So we would do what we always did before. We would ignore the price tag, sign the financial responsibility papers, take on more debt than we would EVER be able to pay. We would avoid it for a while and then the collectors would come. The lawyers would call. They repo men would show up. The utilities would be turned off… all in efforts to simply keep our child ALIVE.
WHY? Why is it that I participate almost daily in FUNDRAISERS for children to be able to have life saving surgeries? Why do WE as parents have to carry this burden? Why are we expected to shoulder the burden of the healthcare costs that WE have no control over.
Those of you who feel like you are now subsidizing MY kid’s healthcare costs and are bitter about it. Feel free to unfriend me, unfollow my blog, whatever… because my daughter has a right to live a healthy life just as much as you do. She didn’t choose to be born this way. She didn’t CAUSE her own issues. She didn’t abuse her own body. She did not choose to nearly bankrupt her family, almost lose their house, cars, etc. But the climate of healthcare costs in our country did that… to us. To our family.
Now… we at least live with the relief in knowing that someone HAS to provide her coverage and us too. It may be astronomical in cost but it will be there. That was NOT a certainty for families like us a few years ago and having a child like her, and having no idea how we would provide her with the thousands of dollars worth of medical interventions that it takes to keep her alive each year, was a downright scary thing. There is much change needed on both insurance and COST of healthcare but that is something that will not be fixed quickly. At this point I can honestly say THANK YOU Supreme Court for upholding the Obamacare policies.
So many times, I feel like a medical refugee in my the freest country in the world. All we want is the opportunity to care of our child. She lives a GOOD life. She has feelings and thoughts and ambitions. She is highly intelligent and she is trapped inside a body that is failing her. If she could change it… SHE WOULD I promise you… but she cannot. We are at the mercy of a system that fails us over and over again. A light in the dark is that there ARE people out there who, inside this broken system, CARE for us and for our daughter in ways that are completely refreshing and sobering.
Our system is broken is SO many ways. The COST of healthcare itself, procedures, medications, etc is outrageous. We must try our damndest to fix this broken system and we must start somewhere. Allowing those of us who are in similar situations, the sickest patients, access to medical care at any cost, is good for our whole society in so many ways. Our children and parents and siblings and friends, are the ones who are willing to participate in research … we are the ones with everything AND nothing to lose all at the same time.
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