Monday, October 20, 2008

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.


Alycia said...

I have never been the first to post a blog before : ) I love this posting. I loved it for so many reasons. Mostly because it allows me/ us to see you in a different light. Maybe not different light but different role. It honestly made me reflect on myself and my actions. Both with you and other friends. It's funny how relationships take on different dynamcis and change both for the better and worse. I am going through a similiar thing with one of my friends. It hurts so much and yet you dont know how to fix it or if it can be. Your not "fighting" or didn't get into a "fight" your just distant with someone you have always been so close with and the distance is so uncomfortable. Feeling uncomfortable around someone you have always felt extremely close and comfortable with is just weird. I hate it but yet I can't seem to fix it because it is just so uncomfortable. Even simple conversations seem strained. Even "what are you doing" seems odd. I should know what your doing we are close friends! Anyways, I just wanted to say as always, I enjoyed today's blog.

P.S. Holding Finn definitely made me want to go out and get knocked up! I mean big time! Whenever I am with the kids I always text my girlfriends with something along the lines of "Feeling very maternal. Let's go out and get knocked up." : ) I am only joking though. Half joking that is!

Laurie said...

Yes yes yes, Lisa. Very well said. I have heard all of these things as well. I know that the message is well intended, but man am I tired of it and yes it still hurts like heck to hear.
Love you!!

Carla said...

I very much appreciate this post, Lisa. There have been times where I have been at a complete loss in knowing what the right thing is to say to you. In fact, I must admit there have been times I have chose silence in fear of saying the wrong thing. I take this post as my guidelines! Hugs.

kiirsti said...

Lisa, I stumbled upon your blog via I was lurking there for some information once. Now I feel like some strange stalker-I live in another state far from you and other than both being mommys, we have very little in common. However, since visiting your blog once early on, I now must visit it daily to check on you, your sweet baby boy and the rest of the kids. Ok, I already knew I was odd, but just typing that out made it even more alarming! But you have such a gift at putting your thoughts into words and I have seriously learned so much from you and these blogs!
I wanted to thank you for just laying it all out there. I think I'm a better mom by some of the things I've read on here and for sure a better friend--seriously.
p.s. I can't belive there's a train of thought that thinks it's ok to say ""they" are carefree people" yadda yadda yadda. Like they are describing a dog breed or something. But then, many of the things you described we're pretty unbelievable. I guess sometimes people don't know what to they say something.
Sorry for the rambling. Will keep checking on you from Farmington Hills, MI. You are a real inspiration to this Mommy!! xoxo

Mrs. Mother said...

This was a wonderful blog. After Jenna was diagnosed and before she was stillborn with Trisomy 18, we got a lot of the comments, too. The worst for me was that I was strong and that's why God I had given me a special baby. For one, I don't believe in God. For another, I didn't feel strong. I felt weak, as though I was barely moving through it.

Besides that, how can you not be strong? Did they expect me to fall apart, to wail and scream and tear my hair out? I had a daughter to take care, and I couldn't fall apart. Beside that, this implied that I wasn't having the reaction they thought I should.

I also lost a friend over this. I don't think I will ever be able to forgive her insensitivity.

kris_w said...

Lisa, thank-you so much for sharing your story and experiences. There have been many entries that left me in tears and many more that make me smile.


P.S We miss you on the July 08 board.

Stef said...

I'm Teegs over on's birthing naturally board and as I was one of the people that made a 'life only hands you what you can handle'-type comment, I wanted to apologize.

This is something that has become somewhat of a mantra to me as I struggle with difficulties with my own health and that of my children. It was wrong of me to assume it would provide the same sense of competance to you without learning more about your world view.

At this point, I'd like to amend that comment and say, instead: "you will learn to deal with this, because you are a strong woman, with a loving heart and because you are a good mother and I know that you will be able to rise to any challenge that parenting throws your way because that is such a part of who you are. Even if you stumble and struggle along the way, you WILL find a way to cope and excel because I have faith in you." Which is the SENSE that I get when I tell myself that life will not hand me anything I cannot deal with.