Thursday, May 4, 2017

Worried for her future

The House just passed a revised healthcare bill which also allows for the ACA to be withdrawn. Yes, I know this bill needs to be sent to the Senate as well. However, this is one step closer to a very scary reality for many many people, myself included. It also comes with the realization that 217 people have just stated that they are alright with the idea that my daughter and so very many like her could die. I know some of you are saying that this is jumping to extremes. Let me tell you about extremes.
Extremes is when your first child, the child you tried SO very hard for 5 years to conceive is born with liver disease. This disease attacked your child through no fault of yours or your child's. When she is three days old you are faced with the possibility of having to leave her behind at the hospital because she is too sick to come home with you. Extreme is finding out at just 11weeks of age she will have to go through not just one day of testing, but two and then a lengthy and dangerous surgery. Extreme is finding out that your perfect child was born without a gallbladder so they could not even perform the one last test they wanted to. Extreme is watching your child's belly swell to the size of a basketball due to all of the fluid collecting in her abdominal cavity. And then listening to her scream in pain every time her belly was drained. Being told that your child has developed the very infection most common for that type of surgery right away while you sit and just watch because you can do nothing to take away her pain or make her magically better. Extreme is finally getting to come home after almost 20 days in the hospital only to go back a week later for another infection. Then you get to stay a week, come home a week, go back again for a week and so on. After a few months of this, you are told your child is one of the unlucky 33% who will need a liver transplant sooner rather than later. Extreme is asking complete strangers to volunteer to give your daughter part of their liver so she can live and watching the outpouring of how many people just simply say "Yes". Extreme is getting the call that a liver has been found for your tiny little girl and being told just come to the hospital in the morning, no rush...when you know it should have been a rush, but that means the child you are getting the organ from hasn't been removed from life support yet. Extreme is handing your 5 month old baby over to complete strangers for a surgery that lasts 10 1/2 hours only to be told afterwards that your child might not have made it to Christmas by the surgeon, which was only about a month away, because she was worse than they had originally thought. Extreme is 2 months of isolation and continued life saving medication twice a day every day for the rest. of. her. life. just so she can live. Extreme is watching your beautiful almost 9 year old child be ashamed of the scars she has because she was born with a disease that no one can predict, no one can tell her why she contracted, and no one can cure. Transplant is not a cure. It is simply a treatment.
If this bill goes through, she could be dropped from her insurance along with so many other children with pre-existing conditions. She could be forced to change hospitals or healthcare providers. She could be labeled high risk. All of these things could lead to her eventual death. Just because she was born, someone found it in their heart to save her life when they lost their child, and she lived. That's it. That is all she has done.
Granted, she could not be dropped from her insurance. They could just raise her deductible and lower her coverage so much that we, as her parents, can no longer afford to pay for her medical care or she is refused from treatment because the Hospital isn't getting paid for her care by the insurance or us.
Again, all she did was live. Tell me why it's ok for a little over 200 people and the POTUS to say it's ok if she dies. Also, think about this. If you are not ok with abortion but are ok with children (even adults) losing their life because they have a pre-existing condition, you no longer get to call yourself Pro-Life, you just get to call yourself anti-abortion. Plain and simple.
For those of you wishing to share, please feel free.

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