Torture

I torture myself everyday with the what ifs and how could no one have seen that he has down's. I look at the many ultrasound pictures trying to find the one thing that stands out. For me it was his 13 week & change ultrasound. His head looks flat & the space at the back of his neck (the nuchal fold) looks almost non-existent. Now of course this is in comparison to other ultrasound pictures that I have seen where the back of the head is clearly defined.

I am wracked with guilt that I didn't get the nuchal translucency test at 11 weeks like I could have. That's the 1st test they do to test for down's markers. I don't know what I would've done with the information, but at least I would've had something to go on. Yes I know that the test gives a lot of false positives, but so does the AFP test I had done at 15 weeks and I still acted on that somewhat. I have convinced myself that if I had more time to get used to the idea of having a child with down's syndrome I wouldn't be so confused, angry, guilty, lonely, sad, disappointed, etc now. I would have had time to figure it out & make decisions instead of not having choices. It really is all about choice.

I have been brought into so many different worlds that I want no part of. I was forced into the miscarriage club. I was forced into the Down's Syndrome club. These are clubs that everyone learns to cope with in their way, but not clubs anyone asks to join.

Well... that's not true. A good friend of mine told me that the waiting list of parents wanting to adopt children with Down's is years long. I have to wonder why? Why would anyone want to willingly deal with the unwanted advice? Why would anyone want to hear the horror stories? Why would anyone want to volunteer to be raising kids well into old age?

Yes yes.... every child deserves love & care. I'm not saying they don't. And for special needs kids, there is a certain level of care that not everyone is capable of. Trust me.... I have been down that road. In fact I'm still on it.

But what I don't understand is why would someone volunteer for hardship? What is about them that makes them feel it's not a hardship? What do they know that I don't know and why aren't they teaching it to me?

I have also come across parents of kids with special needs (all types) and those parents seem to have the life balancing skills that I can only dream about. Why aren't they teaching that to me? How are they able to cope so well? I ask and I'm told.... "you get used to a new normal" Sean isn't even here & I have a mental breakdown every chance I get. I cry myself to sleep   at night. I cry when I'm in the shower. I cry when I"m walking the dogs.

I wait & wait for some answer to fall into my lap that will be my AHA!!! moment. Something for me to say "what a dumbass I am. I could've been doing "this" or "that" all along & saved myself some mental anguish". I don't truly believe that will happen, but it would be nice.

It's ironic to be told that I will get used to a new normal. I have given that same advice when people have new babies and have a hard time with their marriages. I give that advice because it's true in most instances. You do get used a new normal once a new baby comes. You & your significant other must find a way to come together around your baby. There are a lot of mixed emotions; jealousy, love, anger, disappointment, happiness, sadness, mourning, etc. and it takes time & work to balance out the needs of not only your baby, but also your significant other, yourself & then yourselves as a couple.

But I wonder how that holds true for a child with special needs. How that holds true when you're trying to balance a stack of china on your head while chasing a toddler, making sure your significant other feels loved, making sure your child with special needs makes it to therapies & make sure that everyone's calendars mesh up so that no one is left outside music class at 4pm holding a tuba.

Maybe the people to ask are not parents of other special needs kid. Maybe the people to ask are the soccer moms with 4 kids all in different activities. Those are the women with amazing balancing skills.

Well I'm off to balance Elmo, breakfast, cleaning, packing, games and activities for the rainy day.