Tuesday Afternoon.. Reflections of A Mother With A Special Needs Child

On Tuesday of this week, I got a frantic text from a friend who is currently about 17 weeks pregnant.   She tells me that she knows I am at work and probably busy but she needs to talk to me as soon as possible.  I call her back right away.  She’s crying.

Through her sobs I hear her saying that she had just gotten off the phone with her doctor and that she was told the baby “probably” had down syndrome.  The doctor was asking her to schedule an amniocentesis to find out.    I talked to her for a few minutes and attempted to calm her down..  There is no consoling. The best that you can do in that moment is try to convince them that it’s going to be okay.  Everything, is going to be ok.

The first thing that I asked her was “Does it matter?”  I went on to explain that according to the specialist that I worked with through out my own pregnancy, I was informed that the chance of miscarriage was actually higher than the statistics claimed.

She didn’t answer, so I asked her again.  Does it matter to you if the baby has down syndrome?  If it doesn’t, then don’t have the amnio.  I am pretty sure that thought had not been considered.  She was quiet for a few moments and she told me that she wanted to be prepared.  She just wanted to know.   I even threw the curve ball of, what if there’s nothing wrong and you miscarry a perfectly healthy fetus?  You just don’t know.

We spent quite awhile talking about my own experiences and going over all of  the information that I had gathered over the past six or so years since I became pregnant and gave birth to Dominic Adam.  I made it a point to touch on the fact that children with down syndrome today are much different than the kids that we knew growing up.  Thanks to a change in attitude, early intervention, other services that are available and laws,  our kids are able to do a lot of things they either couldn’t in the past or weren’t allowed to..

I couldn’t help but spend the next few hours and even days ( like right now ) going over in my head all of the things that my ex husband and I went through after finding out that our baby “possibly” might have down syndrome.  Due to being uninformed, the diagnoses and the weeks that followed were terrible.  I am also not too shy to mention that I had some horrible medical professionals who robbed me of my joy.

There’s a lot of ways that people can rob you of your joy.  For me it varied. Lack of information, bad information, ambivalence on the part of medical professionals, attitude and a host of other things.  I was in awe of how rude some of these people were.    I honestly believe that some of these people feed on your fears.  This was also when I realized that health care is a business.

Due to being uninformed and unsure of where to get accurate information that wasn’t in the form of a medical textbook with long names I can’t pronounce,  or full of outdated photo’s and drawings of people with down syndrome.  I wanted to find some of the artists and slap them for their idea of what a person with down syndrome looks like.  I was made to feel like I was carrying an alien fetus complete with tentacles, a fifth eye ball that was dirty and disgusting.

Still my baby. Mine.

There were times when I felt like I was the only one fighting and I was protecting him from something..

It’s one thing to give me medical advice but don’t follow it up with “you have options”  At 25 weeks, I could already feel Dominic moving, I knew he was a boy and I was already calling him by his name.  I couldn’t possibly imagine stabbing him in the head with a pair of scissors. Honestly, when the doctor spoke to me about “options” I didn’t even realize that he was referring to an abortion until later.  Seriously, it was so far from my own mind that when it dawned on me, I was like OH?

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