Saturday, April 25, 2009


I'll elaborate on that last entry. Jeanette calls them landmines, and I guess I sort of stepped on one this afternoon.

I was out with Kevin and Joey this afternoon and we happened to run into Kevin's teacher from last year. She and I were pregnant at the same time and her little girl was born about 3 months before Finn was. She had her little girl with her, cute as a button, running around (literally), etc., etc. She (the mom/teacher) asked me about my baby, remembering that we had been pregnant at the same time, and I told her that I had a baby boy in July and she asked how he's doing, and I know I should have just said "Great!" and left it at that, but instead I told her that we received his very unexpected diagnosis of Down syndrome after he was born. She smiled and cocked her head and furrowed her brow a little - you know the look, the one that says "Oh, my how terribly sad . . ." - and I smiled really big and said, "Oh, you know, he's great and we just love him to pieces!" Which is true, but I know I find myself mustering up all this enthusiasm and saying that to people to ward off the pity looks. And she was really nice and I just know in my heart that she was thinking "Thank goodness my baby is normal!" Cynical? Yes. But I'm still sure of it. And I believe I run into this all the freaking time. I think people's first reaction is usually pity, and then when you deflect that with your enthusiasm about how great it is to have your child, you just know they're thinking "I'm glad it's not me!"

And really, it was hard watching her tiny one-year old girl literally running all over the store and giggling and knowing that Finn isn't going to do that in three months.

You know what? Sometimes I wish my baby had been born "normal." Sometimes I wish I didn't have to justify him to people. Sometimes I wish I didn't have to explain why he's not yet doing this or that. Sometimes I wish I didn't have to hear all the fucking time how "special" and "happy" these babies are and what "gifts" they are, when I know damn well that the people who tell me these things are just thanking their lucky stars that it didn't happen to them. I know I'm not supposed to say these things, or feel these things, but sometimes I do.

And now I'm crying. And I'm supposed to be getting ready to go out to dinner with my husband for the first time in two and a half months.


Beth said...

You're not alone. I have had conversations almost identical to that, I've chirped about how much we love Jude (because we do!) but I've heard too much enthusiasm in my own voice and suspected that I sounded pathetic.

I think it's completely normal to feel the way you do, and I also think it's cathartic to say so every now and then! No one thinks any less of you and many of us can relate.

Of course you wish Finn didn't have Down syndrome. I'm always suspicious of those who say otherwise. My daughter has astigmatism and stubborn cowlicks in her hair. I wish she didn't have those---how could I say I'm thrilled that Jude has Ds? It's OKAY to think it and feel it and even to say it to those who will understand.

But then afterwards, you go about loving him just as you always have and always will, and you deal with what is.
That's what I think, anyway.

starrlife said...

Lisa to Lisa-It has nothing to do with how others see Finn but it is about how you see him that counts, this is what will make the difference for him in his life. It is perfectly normal for people to react all kinds of ways, some not pleasant, but totally normal. A funny thing for me was that, in the beginning, before I was adjusted, I found myself comparing to other children with DS (oh my daughter is so high functioning kind of thoughts) and/or children with OTHER differences and thinking to myself, "thank goodness, it could've been so much worse". And then I would feel shocked and unkind and ashamed. I finally realized that it is just human and that for me to give my child what she needed I would have to open my heart fully and embrace the beauty and value of difference. But still it is okay for you to be human and grieve your preconceptions of what a perfect baby should be. As long as it is not malicious we can educate and be role models. It hurts because there is still a part of you that is unconvinced- and that is human too! Hugs, it will all happen.

Ruby's Mom said...

I know how you feel Lisa.I always wonder what people are really thinking when they talk to me about Ruby.
I like what Beth had to say in her comment.
Hugs to you!

Molly C said...

I wish I could hug you! You are so honest and I think you will find you are not alone.

Jeanette said...

Oh Lisa.... landmines suck! Plain and simple... and the worse part is that they just plain exist. Wouldn't it be nice if they didn't? I find myself wondering sometimes what people "really" think when they fawn all over Sydney. Sometimes I take it at face value and sometimes I wonder what "else" is going on in their minds behind the tripe comments.

I also find myself "explaining" why Syd isn't doing things, whether or not people ask. Then afterwards I get that "I said too much" feeling.

I hope that you were able to have a nice dinner with your hubby. You've had so much on your plate lately... girl, you deserve a good "boo-hoo". Have a glass of wine or a bottle of beer, have a rocking evening with your husband, and maybe the dawn will bring some peace. cheers! and hugs!

Tara said...

You know, initially I told anyone and everyone about Eon's Ds. I did the uber-positive voice, too. A few days ago I suddenly decided to rest in anonymity while I still can. He's only 3mos. old and his features are mild, so the differences are not real evident yet. Soon enough I'm sure some will demand explanation. But, for now, I just say "yes, he is a beautiful baby." Because, I know what you mean. I've seen them think it, too.

Karly said...

We have all been there and yes, I know people are thinking "whew"...but you know what, just because they don't have a diagnosis now, doesn't mean their life will always be perfect and charmed. Sometimes I find myself wishing they knew that it could just as easily be their child dealing with some hardship.

I have also had several friends who have children the same age as Kailey having subsequent children. It sucks to see them now contemplating prenatal testing, etc. To know that my kid was the one who put that "fear" in their head. But I can't really fault them for hoping their child doesn't have to deal with Ds (since I wish mine didn't), it just makes me sad because they don't walk around in fear of all the other things that could happen...worse things really.


erin said...

Lisa--as someone that is not a mother of a Ds child, I can tell you what I think when a see a Ds child and his or her parent. I have thought that I am lucky that it isn't me, but because I fear that I could not live up to the selflessness, and strength that is required to be there all day, every day. I feel as if I would fall short. Raising any child is difficult, even witha strong support system. Raising a child with Ds and feeling in the minority and having so little to fall back on comparatively for support-- so tough! Give yourself the credit you deserve! I think that all kids are special; not all parents are special. The parents of a Ds child are MOST DEFINITELY SPECIAL! Maybe those that you think are looking at you with pity, are looking at you in AWE because of the job you are doing! YOU ARE CHOSEN TO DO SOMETHING NOT EVERYONE CAN! We sometimes feel self conscious about ourselves and fell that we are being perceived a certain way--and haven't you ever been totally wrong! What you thought was a flaw, was looked at as a great strength or attribute!
keep up the good work!

Anna Alexandrova said...

I am so envious you are going out to dinner! And I am all for a good cry every now and then. XO

Mel said...

It is hard to see another child the same age as yours and to not notice the difference in development. It is hard to know what to say in those situations, and I am still trying to work out when to say something and when not to. For the others involved it is a no win situation, and in their shoes we wouldn't have known what to say either. One dear friend told me a long story about a girl who had beaten up her daughter years previously, and used the M word- when my newly diagnosed baby was only 2 days old! I am sure she is horrified now if she remembers it. I now try to lead the way. If I am okay with it, then others will be to.

Lisa said...

You are sorting through all the feelings that I went through--and I assume most moms go through--in the first year or two of life with a child with a diagnosis. It is completely normal to wish your child was born without a diagnosis, and it is completely normal to sometimes feel badly about feeling that way :).

I know for sure that there are some people who think "I'm glad it is you and not me"...I've even had a few people tell me so. "I don't know that I could do what you do" or "I'm not sure I could handle it" really means "I wouldn't want to do what you do" or "I wouldn't want to handle it"...which I understand because of the extra work associated with caring for a child who is "differently abled" and because of this feeling that you describe here--of being different, and not necessarily in a good way.

But though I wish Bridget was born without Ds (which most likely would mean less work, less worry, less feeling "different"), I wouldn't change anything about her now that she's here. Sure, I'd love for her to have been typically developing--mostly because I feel comfortable with parenting "typical" kids since we are fairly experienced in the parenting department (and thought we'd seen it all!)...and her having Ds has meant that Chris and I have had to dig in and learn even more about parenting, Down syndrome, and ourselves.

Who is to say, though, that even if she was born without Ds, that we wouldn't have something else to manage through with her (another diagnosis later on, poor social skills, learning disabilities, cancer, addiction, whatever). We're kidding ourselves if we think we know what is in the future for any of our children, with a diagnosis or without.

So when people say, "I couldn't do what you do", I reply "Don't sell yourself short. You sure could." Chances are, they'll have something "not so easy or perfect" to deal with in their lifetime, too.

It is what it is. And we have to play the hand we're dealt. Sometimes things are tougher than others. Having a child diagnosed with Ds is hard to process, but it's all the side stuff that makes it even harder sometimes. As Amy (Larkin's mom) says, "Everyone gets their sh** sandwich in life". Some of those sandwiches are foot-longs, and others are tiny morsels. But we are all guaranteed to get some of both.

Lisa said...

And I don't mean to say that having a child with Ds is the sandwich for us (some of the associated issues--medical concerns, extra steps, feeling like people don't "get" her or us--those are the things that are hard for me about her having Down syndrome).

With that said, we've had much bigger sandwiches to digest than having a child with "special needs", and I know you have, too.

I guess we're just lucky :)...

Maureen said...

It really is true about everyone having to deal with hard stuff in life. I was seeing a therapist for awhile and while I liked her overall, there were times I felt like she was good at 'talking the talk' but not necessarily at 'walking the walk'. She was so authoritative on how to deal with problems and gave off the vibe that her life was going along quite smoothly. Well I'm not seeing her anymore and a large factor in why was because her 30 year old son was killed by a drunk driver last year. She was shell-shocked to say the least and I didn't feel comfortable seeing her while she was grieving so intensely.

I found it so ironic; here was someone who was supposed to be an 'expert' on dealing with lifes difficulties and yet I observed the 'deer in the headlights' look all over her face during one of our sessions. She didn't even have to tell me something happened; I could tell just by looking at her that something was 'up'. I then did some googling after that session and came across a link to a newspaper article about the crash. It really drove the point home that no one gets through this life unscathed and even therapists get their world rocked just like the rest of us.

Ann said...

I try to avoid Landmines at all costs! I decided after three months that I was too tired to tell one more person about the down syndrome diagnosis. I stopped. I think most people know and it has been easier for me to assume that everyone does know. I have learned to take all compliments on my "adorable" daughter in stride, without the need to share her medical history. She is perfectly the little one that she was meant to be!

It is very liberating not to feel the "need" to discuss her diagnosis, but I do discuss down syndrome if asked. It is only one side of her life, and my family's life.... I feel that people realize it is not such a big thing, it is just different.

I like to go the route of easy... and this has been easiest for me.

Ann said...

Not to say that the Down Syndrome diagnosis is not a "big thing" because it is, obviously, huge. But in terms of how I would like people to view my daughter, I want them to see a child, not a diagnosis. And that is why I only discuss her differences if asked. It is so much easier!!!!

Alisa said...

I know that feeling. Your post flashed me back to a million conversations conducted in "the happy voice". And facing the condescension of people who actually believe that they have managed to control life a little bit better than I have! In truth, they haven't, they just don't know it yet, so I count myself ahead of the game.

But six years in, I have to tell you, I realize those conversations don't happen as much. And I had to stop and figure out why. Mostly it's because Lena is now a "real girl" with her own personality, her own interests, her own friends, and her own ability to have an impact on people, separate and apart from me. Unlike a baby, a 6 year old is interacting with the people in her world a lot more. And you know what? Dang, my little girl can hold her own. Plenty of people prefer interacting with her than with me, her outspoken mom! She does not need me to explain her or justify her. In fact, sometimes I feel like I'm traveling with a rock star. People know her, and want to come talk to her. And nobody gives a rat's ass about me, the chauffeur and escort!

And as Lena's grown, I, too struggle with the "do I wish she didn't have it" question. Early on, I would have said, resoundingly, "yes", and even now, there are parts of it that I wish she and I didn't have to deal with--umm, potty accidents, anyone? But I also see how her struggles and her achievement over those struggles, are an inextricable part of who she is. And so the question becomes harder, because if you take that away, then she's someone different--maybe not so fun, so triumphant, so persistent, so full of "yes I can" (which she mutters to herself adorably whenever faced with a big challenge).

In many ways, she's my most interesting child-the one who fully engages my heart AND my mind as I work with her to capitalize on her strengths and minimize her weaknesses. I want that for all three of my kids, but it's so much more engaging with Lena. She's the one who makes me more human, makes me the best me I can be. She requires more of me, and that makes me better for EVERYONE in this family, and makes me a better person overall.

The spectrum is wider with Lena--the highs are higher and the lows are lower. Do you trade a narrower spectrum just to avoid the lower lows? Most days, I don't think so anymore.

Sorry for the long post--I don't have my own blog-just the comments on yours :-)

Razzle Dazzle Mom said...

Lisa, I only know you briefly from, but I read your blog often, and you do inspire me. Even before Finn I thought you were an amazing mom!

I wanted to let you know that I read Welcome to Holland on your recommendation, and LOVED it. I hope that through these things I can become more educated, and leave out that shell-shocked look.

I hope you had a great dinner with your husband!