Ups and Downs (no pun intended)

There are days when I feel like I've gotten over some major hump in dealing with this whole DS thing, that I've made some major strides in acceptance and making peace with it, and that the darkest hours are behind me.

Today is not one of those days.

Today I find myself fighting the tears (again). When I wake up each morning, I never know if it's going to be a good day or a bad day. I guess nobody knows that when they wake up, but ever since Finn was born, I seem to be much more aware of the unpredictibility of my feelings.

(Caveat: I know a lot of people read this. If you feel that anything I write here refers to you, please just understand that I'm not attacking anyone; writing here is just how I attempt to process my feelings.)

I'm not sure what set me off today. I started off with good intentions. I've distanced myself from my MOMS Club ever since Finn was born, despite the fact that I've been a very active member for 6 years now, and despite the fact that they all rallied around us in such a huge way in the weeks after Finn was born. But it's been difficult on an emotional level to get back out there. But today I decided to try - I figured I'll never know unless I try, right? So I got the boys off to school and then wrangled the girls and Finn and headed to the park for a MOMS Club playdate. There were only a few moms there with their kids, and everyone was really nice to me. One mom hugged me. She's never hugged me before. It was nice, but I felt suspicious. Does she feel sorry for me? On a rational level, I know that she was surely just being supportive . . . but I seem to question everything in my head nowadays. Everyone was really nice, asking to peek at Finn, who was wrapped up in a Moby wrap, and asking how he's doing these days. One mom showed up with her baby who was born a few months before Finn, and I suddenly recalled that when she was pregnant, her routine ultrasound showed something that might have indicated Down syndrome. But everything turned out to be okay with her baby, and there she was today with her perfect baby, and there I was with my Down syndrome baby. I wonder if she was looking at me and feeling relief. Or pity. Or both.

Another friend texted me this morning to tell me that her friend had her baby this morning. I presume she had a "normal" baby. The friend who texted me just had her "normal" baby a couple of weeks ago. I know she's just trying to keep me included in the same loop as before, to not make me feel like she's walking on eggshells around me . . . but it's really hard to hear about other people's perfect babies right now. It hurts like an almost physical pain.

I hate it that I have fallen into the habit of categorizing babies now. They are either "normal/typical/perfect" or not.

I have a number of friends and acquaintances who have young babies. They complain about things like lack of sleep, screwed up routines, how messy their houses have become because it's so hard to do it all. Sometimes I want to scream, "Your baby will sleep through the night eventually! You'll manage to create a routine! And you'll figure out how to keep your house up or live with the mess! It's all temporary! You want to know what hard is? Finn has Down syndrome, and he will ALWAYS have Down syndrome! I'll likely have to carry him around until he's 2 because chances are he won't learn to walk before then! I'm going to have to learn freaking SIGN LANGUAGE because he's not going to learn how to talk for a few years! We have years of physical therapy, occupational therapy, and speech therapy to look forward to! He has a hole in his heart! I don't know if he'll ever be able to live on his own and take care of himself! THAT'S HARD!!"

And I absolutely despise myself for feeling so angry/jealous/bitter.

What right do I have anyway? After all, I've been fortunate enough to have 5 normal/typical/perfect kids. I feel like I'm being greedy for wanting them all to be normal/typical/perfect. And I know that there are parents with children afflicted with much worse things than DS, and that they would probably look at me and want to scream, "You want to know what hard is?!?" I try to remind myself that on the spectrum of genetic disorders, DS is definitely one of the more mild and manageable conditions.

But still.

And I know I'm making it nearly impossible for my friends. Apparently there is no right thing to say or do with me. If any of them were to ask me "What is it you need from me right now? What is it you need me to say/not say/do/not do?" I wouldn't be able to even begin to answer them coherently.

I don't know what I need or want. I know that it's very difficult right now to be around people with typical babies. But I don't want to surround myself with people with DS babies either because I think that would also get me down. I guess this is how people become reclusive and lose the people they care about. And I don't want that to happen either.

I feel lost right now.