The best and worst things to say and do

Chrystal posted this in her blog about appropriate things for people to say to a parent with a recently diagnosed child with DS. Interestingly, I've been compiling my own mental list of things that have been said to me, and just general reactions from people around me, since Finn's birth.

The worst:

~ "They are the happiest/sweetest/most carefree people!" I swear to god, if I hear this one more time I will not be responsible for my actions. I might actually inflict bodily harm on the person saying it. First of all, no parent wants their child to be lumped into a "they" and have their individuality taken away. Further, this is nothing more than a ridiculous stereotype - which amounts to prejudice in my book. This type of statement makes them appear one-dimensional and devoid of any unique personality or real emotion. It's just not true. People with DS are real people with real feelings and opinions and moods just like everyone else. And hey, Finn's proof - he is one grumpy little man.

~ "Didn't you have the prenatal testing done?" This implies that if I had, then I would have been able to do something about it and wouldn't be dealing with a child with DS now. This is just cold and presumptuous.

~ "Special babies are given to special parents." Another one that makes me want to scream. Most parents who have a baby with DS or any other serious diagnosis don't feel special - and in fact, they're not. Not any more special than any other parent, anyway. We're for the most part just regular folks doing the best we can. I think this is an attempt to make the person saying it feel assured that they're not "special" enough to have something like this happen to them. Well, lemme tell ya, I'm not special, and I have no doubt that I didn't earn that "title" until after Finn was born. This stuff can and does happen to anyone. And I take issue with the whole "special babies" thing too. In our family, all of our children are special, they're all gifts, they're all blessings. Finn requires some special care, certainly, but he is no more "special," no more a "gift" or a "blessing" than any of my other children. In some ways, "special" can be a divisive term, emphasizing differences rather than fostering unity.

~ "God never gives us more than we can handle." Okay, I'm the wrong person to say stuff like this to since I don't even believe in "God." But even for those parents who do believe in God, saying this is like slapping a bandaid on a gaping wound where a limb has been torn off. It's a weak attempt to make the situation seem manageable. And let's face it - if nobody was ever given more than they could handle, there would be no nervous breakdowns, no going postal, no alcoholism . . . need I say more?

~ "I always wanted a baby with Down syndrome." Seriously?!? Yeah, someone actually said this to me.

~ "Well, at least he doesn't have [fill in the blank]." This is not a helpful thing to say.

~ "Yeah, we were really scared about the possibility of Down syndrome when I was pregnant because of my age, but fortunately everything turned out okay with our baby." Seriously, someone said this to me after Finn was born. And this was supposed to be supportive . . . how?

The best:

~ "I don't understand what you must be feeling, and I don't know the right thing to say, but I'm here for you."

~ "Congratulations! He's beautiful."

~ "Can I hold him?"

~ "He makes me want to have another baby."

A note about "I'm sorry":

It's usually noted on these types of lists of "what not to say" that saying "I'm sorry" or expressing condolences is not appropriate. I think it depends on context. If it means "I'm sorry you have an imperfect baby," then yes, that's innappropriate. However, many friends hugged me as I cried and told me they were sorry, but I know that their sorrow was about the anguish I was feeling, and not about the baby I had given birth to. Those "I'm sorrys" conveyed support and meant a lot to me.

And now let's talk about actions:

My family and I were so fortunate after Finn was born. We had so many people join together to support us, both in word and in deed. Friends came over and watched our other kids so Michael and I could be at the hospital with Finn; they brought us dinner nearly every night for two months! My MOMS Club took a special vote and used a large sum of money from the club's treasury to pay for a nanny to help us out through the summer. People brought baby gifts and congratulatory cards, just like they would have with any "normal" baby. And through all this, most of them understood that there was a grieving process going on, and they stood by and allowed me to grieve the baby I had dreamed about for 9 months.

At the risk of upsetting a certain someone, I'm going to share a little something here. I figure that since this is the place I go to work through my feelings, it's okay for me to talk about this here. There was a friend, someone with whom I had been friends for close to 15 years by the time Finn was born. In the aftermath of his birth, she brought gifts, she brought food, and she helped out by watching our other kids when Finn was in the hospital. But she didn't want to let me grieve. I suspect that it made her too uncomfortable, as she is one of those people who wants everyone to be happy. So she used a lot of the cliches on me about special babies being given to special parents, how "they" are so happy and carefree, and how everything was going to be great. She also didn't read my blog during the time I had requested friends and family to stay up-to-date that way because I couldn't keep up with all the phone calls and emails. I assume she didn't, anyway, because she would leave messages for me asking questions that could be answered in my blog. So because she wasn't reading my blog, she was unable to gage what kind of support I needed, and instead gave a lot of innappropriate support that ended up causing a lot of hurt. She tried so hard to cheer me up and make me see the silver lining, and it was so exhausting for me to to try to be what she needed me to be in order for her to feel good . . . that I finally distanced myself from her. I also suddenly started being really bothered by little things she said and did that previously I had found to be in poor taste, but now I found to be hurtful. Like the fact that she uses the term "fag." Or how she showed my kids how to do "chinese eyes" and laughed about it. These are manifestations of prejudice. How could I trust that she wouldn't have prejudice towards my special needs child?

So for all intents and purposes, that friendship has been irreparably harmed. I sent her an email at one point telling her how I felt and she responded with a birthday card to me signed very formally with her first and last name. I don't know what she meant by that, but it felt like a passive agressive slap in the face, and certainly not something that was going to bridge the distance between us. She has since requested that we talk things out on the phone or in person, but I haven't been able to bring myself to go there. I struggle with it. I think about her every day and miss the friendship she and I shared for all those years, but it seems apparent to me that Finn's birth and diagnosis changed things forever between us.

So, that's the way things go for most people walking down this path, I suspect. Relationships change, often for the better, and sometimes for the worst.