Cases like mine don’t make the internet.
At first I was so relieved to hear that. But the more I thought about it, the more I realized how unfortunate that was. I can’t tell you how many times a day I go online to learn more about something. Whether its for work, for my own personal knowledge, or to settle an argument. It’s such an incredibly helpful invention, knowledge literally at your fingertips. But why, when you look up something about a disease, condition, or disability does the information seem to always omit the positive side of things?
I work at a national Down syndrome awareness center (www.gigisplayhouse.org) and one of the things I do on a daily basis is deal with new parents. Parents who just received the diagnosis of Down syndrome for their child, either in utero or a few days old. The first thing I say to them is “Congratulations!” Not because their baby has Down syndrome but because they just had a baby. And that’s what you say to someone who just had a baby. The response I nearly always get back is “Wow, that’s the first time someone has told me ‘congratulations’. Everyone else says ‘I’m so sorry’”. It’s hard for these parents not to view their child as a diagnosis instead of a baby when people keep apologizing to them.
And when those parents go online for information, the websites that come up have nearly all medical information. Nearly all facts and statistics about disabilities. Limiting abilities. “Your child might get autism. Your child might have celiac disease. Your child might develop leukemia.” But isn’t that true of the general population? My child might get autism. My child might get celiac disease. My child might have leukemia. A doctor, regardless of the amount of medical training, can’t predict that – not for my child or any other child.
I recently saw the results of a survey where parents indicated that they would like to see potential and quality of life rather than only the medical consequences associated with a diagnosis.
We tell parents of babies with Down syndrome not to look up the info online (though it is certainly getting better and having more positive information out there). Just like my doctor told me not to look online. But the problem is our human nature. Some of us are strong enough and rational enough to not look at the information. To not search for hours, reading the same negative statistics and the same difficult outcomes. My husband is one of those strong people. I am not.
It’s like a car accident holding up traffic. Usually, by the time you get to the source of the accident, the cars involved are pulled over to the side, help has arrived and traffic actually could flow normally. But it doesn’t. Why? Because people want to see. There’s even a term for it – gapers delay. The definition is ‘a traffic jam caused by slowing down or stopping of cars to look at an accident on the side of the road.” And it’s so annoying when you are just waiting and yet once you are up to the site of the accident, you tap the brakes a bit as you look to see the taillights crushed on the ground, the stretcher being put into the ambulance, and you assess the situation and come up with your own version of what must have happened. You might send up a prayer, but you still crane your neck to take in all the details you possibly can.
That’s how I felt. I couldn’t tear myself away from the internet – I was causing my own personal traffic jam, not allowing myself to move forward. From the negative statistics and the gruesome photos. But then the doctor told me that cases like mine don’t make the internet. Why not? In all reality, all I was searching for was a case like mine. All I wanted to read was that it was possible for baby B to grow slow enough to not warrant surgery. All I wanted to know what that it had happened out there to someone else – if it happened to just 1 of those other moms out there, then there’s full reason to believe it could happen to me. But it wasn’t there.
Here’s how the doctor put it…
If there were 100 women that came in with TRAP syndrome and 80 of them needed surgery, then the medical journals would write about 80 women who had TRAP syndrome. There would be no mention of the 20 who didn’t. Who went on to have their babies, maybe prematurely but still healthy.
I know I’m not in the clear yet. And I know that things can change at literally any moment for my situation. But it’s still comforting to know that there are those other moms and dads out there going through this who will have a positive outcome. I’m not saying that I, or parents of children with a developmental disability, should see the world only through rose-colored glasses. But I believe you can be positive and be realistic at the same time.
I just think that instead of only representing the negative part of the picture, add the human side. Instead of just including the research on the outcomes of those that needed surgery, include the ones that didn’t need surgery at all. Instead of just saying that a child with Down syndrome will have trouble learning, say that they can learn, they will learn, and that they can do nearly everything you and I can do.
Picture this…you are recently diagnosed with breast cancer so you go online with a heart full of fear and anxiety. You click on the first breast cancer link that comes up. But instead of reading about how the disease metastasizes, or how great of a hospital XYZ is, what if it showed the picture of a woman and her children and then described the incredible story of how she beat it and is now fully living life again. THEN, when you read the rest of the info about the disease, you are reading it through the filter that it is a beatable disease. They say that a positive attitude is one of the most important things to have when battling a disease so why not give people some reasons to have that positive attitude?
What if when you find out that your child is going to have Down syndrome, instead of reading about the disabilities that he/she will have, what if you saw a video of an adult with DS talking about how she works, lives on her own, is married – is more like us than she is different! Then you would view your baby as your gorgeous precious gift. Not as a diagnois. Not as a burden. But as potential.
What if a case like mine was in the internet, and a mom finds out she is pregnant with twins, then loses one, and then finds out that she has TRAP sequence. What is she goes online and sees a case like mine, and finds the hope that she so desperately needs to hold onto as she prays for her baby in her belly.
Hopefully, that will soon be true. I know the world of Down syndrome and other intellectual disabilities is really doing a great job with trying to put the human face to the diagnosis instead of just a medical statistic. That’s why I love my job. Everyday, we get to help parents reframe their mindset and see their baby as a precious gift of potential.
I know this altruistic wish for life isn’t necessarily going to happen overnight or worldwide but if we are able to take that split second when we hear the bad news to remember the disclaimer; that cases like mine don’t make it on the internet. A disclaimer that says, the information found here does not always represent the whole picture. It can cause gapers delay - a personal traffic jam preventing us from moving forward in life. The disclaimer that works best for me is to remember that I don't have to trust only in the internet. There is a much more powerful, more knowledgeable and more trustworthy Source to place my trust. To draw my Comfort from. I rest in that Truth.
thank you!
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