Another part of being a mommy to a son who has Down syndrome is understanding the medical jargon and learning how to fill out the forms. Most doctor visits, whether to the cardiologist, the opthamologist or the endocrinologist involve filling out some form. A form that asks about Joey's health history. With our first son, Tommy, those forms were a breeze. Tommy was born via c-section (two weeks late!), has no known allergies, no hospitalizations, no surgeries...mostly nothing at all. For Joey's forms it is more complicated and what is just a "formality" often becomes more than that. Depending on the day, it can even get a little emotional. Oftentimes I just want to ask, "Do you really need to know everything?" Because let's be honest, Joey has got a medical record much thicker than any 17-month-old should have. I just start filling in the various blanks. Born at 37 weeks via C-section due to abdominal ascites. Under the bilirubin lights for five days for jaundice. Diagnosed with Nystagmus. Silent aspirator. On honey thickened feeds. Severe hypotonia. ASD repaired at 9 months old via open heart surgery. Leaky Mitral Valve still monitored. Hearing loss (extent unknown). Ear tubes placed at 15 months. Plagiocephaly corrected via cranial device (helmet). Torticollis corrected via therapy.
It's a lot when I look at it all, not as much or as bad as many other children experience and deal with daily, but a lot. And as much as it all is-- I would not change a single thing about any of it. To take anything away would mean changing Joey and he is who he is because of all he has been through and all he goes through to get there.
Once of all those blanks are filled out, you get to the part where you check yes or no to various ailments/medical issues. At this point there is usually a spot on the form where you are supposed to check yes or check no to: Mental Retardation.
That's a tough one for me. I'm usually the crazy/obnoxious mom who crosses the entire phrase out and fills in my own version. Usually it's "Developmentally delayed". I just can't ever bring myself to check Yes to the "Mental Retardation" box. I just can't. Think about it-- could you do it for your own child? I know--it's just a word. But words have connotations and meanings attached to them and that is one word I'm not willing to give on.
Which is what leads me to the entire purpose for this posting. There is a little girl, Amelia. Amelia needs a kidney transplant. Without one, she will probably die in the next 6-12 months.
Her parents plan on someone in their family donating to her. Children's Hospital of Philadelphia (CHOP) have denied her a spot on their transplant waiting list because. . . she is "mentally retarded". Can you even imagine? This is her story here.
It's only mid-January and we have almost hit's Joey's yearly deductible for health insurance. I just got a letter yesterday asking if his medical costs were due to an injury at work. I had to smile. The letter said that they are concerned with decreasing costs and cost containment. Then I read about Amelia. And that's when I became really worried. Then I was scared. Where is our health care going? This is the United States. What if Joey needs a transplant at some point. Will he be denied because a box on a medical form declares that he is "Mentally Retarded?"
Are you angry about Amelia's journey? Are you outraged that CHOP is denying her the right to try and live? If you are-- re-post her story.
You can also go to Change.org and sign the petition.
Here is what Tim Shriver (LOVE TIM SHRIVER!!! Also LOVE Eunice Kennedy Shriver who started Special Olympics) says about this travesty:
Please join in the fight to preserve dignity. Please fight for Amelia. Please fight for Joey and all the other millions of people who have an intellectual disability.