Tuesday, November 18, 2008

I'm sorry, does this make you uncomfortable?

Sometimes I wonder what the right answer is when people ask how Brooklyn is doing. I'm asked this about a dozen or so times a day at work. When I first came back from maternity leave, Brooklyn was having so many problems, and of course we didn't know what was wrong. So people would ask, "How's the baby?" The first few days, I would actually try to explain what was going on with her health. But after getting some blank stares and some odd responses, I quickly shortened my answers to things like, "Well, she's okay. She has an appointment with a specialist next week." Or..."She's all right. We are about to have some tests done to try to figure out what's wrong with her breathing and why she isn't gaining weight." Things like that. But I keep it short and sweet. People still seem uncomfortable with that. If something positive is going on, I tell them that...for example, "Well, she gained some weight!" Or, "No, she's not better yet, but we found out what's wrong, and that's a huge step in the right direction." Or I'll tell them how excited I am about her sitting up or saying "Mama" or reaching some other milestone. If I go that route, they usually ask about her health next, but it seems like they still don't REALLY want to know.

I don't lie to people. I don't just say everything is great or good or fine with us. Honestly, I don't really feel like I should have to. I know that's the acceptable answer...but am I alone in feeling like if people are going to ask, they deserve a real answer? No, I'm not going to go into detail, but why should I have to give you a fake perfect picture of what my life has been lately? When you specifically ask me how my child is, why should I have to lie to you about it? Just because you might not know what to say?

I know we all do it. When we ask people how they're doing, we generally don't want to hear the truth. It's just a formality most of the time, and all we really want to hear is "Fine."

I wonder what it must be like for parents with terminally ill or very, very sick children. I wonder how they handle the everyday questions about how their kids are without making people squirm. Trust me, I know our situation is nothing compared to these. And I think that's what makes me feel kind of guilty about giving people a real answer. Then they might not think that I'm happy enough about being a mother. They might think I'm just feeling sorry for myself, or that I'm not grateful to have my sweet baby bear. What if they think I am fixated on the negative and don't think that I am totally crazy in love with my adorable daughter?

A few months ago, when we still didn't know what was going on with Brooklyn, when we had tons of tests coming up, when I was terrified of what could be wrong, a former coworker came by my floor at work to visit. He had retired about a year prior, but we had occasionally exchanged emails since then. He knew that I had just returned from maternity leave and that Brooklyn had been having some problems. He asked me how things were going with her. I gave him a little bit longer version of our situation, because I felt like he would be understanding. He was a parent and his first grandson was just a bit younger than Brooklyn. I told him about all her medications, breathing treatments, lack of weight gain, the tests she was having to go through. And his response was, "You know, there are a lot of parents that go through much worse. It's not that bad."

You don't think I know that? You don't think that I feel guilty all of the time because I know there are so many parents suffering through so much more? That I don't think I should be happier or less stressed because other mommies lose their babies, or live with the reality that they could lose their babies any day? I KNOW these things. This man made me feel about two inches tall. I felt like I should never tell anyone anything other than "Everything's fine."

Really and truly though...I don't feel like we should have to apologize or feel bad about for things in our lives that are beyond our control. I don't think that we should have to create a false reality, especially when it comes to our children.

Right now, my reality is this: I have a beautiful, sweet, smart-as-a-whip eight-month-old baby girl. She's the most wonderful thing I could have ever imagined having in my life. Unfortunately, she has some health problems right now. She has laryngomalacia, a problem with her arytenoids, severe reflux, and "failure to thrive." She's been through all kinds of tests and procedures and she has several specialists. She takes multiple medications, but they really don't seem to help. I don't know whether she will outgrow this or whether she will have to have surgery. I hate that I can't fix her and that no one else has yet either. And I get stressed out, and I get scared. And if you're going to ask me how my baby is, I'd appreciate it if you would validate my feelings instead of making me feel like a terrible person for telling you the truth. I'm not asking you to feel sorry for us, because Lord knows there are many, many others who you should feel sorry for before us. But please, just don't make me feel worse about a situation that already makes me feel bad. Thank you.

Thoughts, anyone???

15 comments:

Hope said...

Amanda, I'm sorry that you feel this way. Next time someone acts like she's not "sick enough", ask them if they would like their children to have an airway obstruction. Yes, it can be life threatening. Remind people next time they belittle her L.M, that a trach is a typical treatment for it. That should shut them up. You and Brooklyn have been through hell in her 8 months and deserve the right to explain her problems any freakin way you want. The issue isn't with you, so please don't think that. You are in my thoughts and prayers. ((Hugs)) You are doing a wonderful job and never forget that!

Luckygirl said...

I don't know you, but I found your blog via a twin mom's blog (I have twin boys) and have been following along and praying for Brooklyn. I don't think I've commented before, but I just have to comment that when I ask someone how their baby is doing, I actually want to know the truth, so I can help if they need anything and at least pray for them. I agree with what you say about not lying about your situation - good for you! And you are very correct that someone else's worse situation doesn't change your's. My best friend died 3.5 months ago and it has been very hard for me. I was told "at least it wasn't your husband." Well, yeah, that would be worse, but that doesn't mean that I don't miss my friend terribly... Some people just don't get it.

Kate said...

I think people say things like that b/c they feel uncomfortable. It's possible to be sad about your own situation and feel sympathy for others who might be having a "harder" time. ((hugs))

Sam said...

I hate it when people ask me about my pregnancy and I tell them that it is sucking the big one. Because I'm supposed to be glowing and shit, right? When I saw that I'm not doing this again, people dismiss it and tell me that I'll change my mind. Because I'm just being a silly pregnant girl. AARGH! It makes having a blog a valuable tool to vent about all the asshats. We're here for you, and we know that it sucks. I hope it gets better. Brooklyn is such a sweet, adorable little girl.

MrsSpock said...

I think most people ask the "How is she doing?" question to make small talk and only expects the usual "She's fine" response. Most people have no idea to to respond when there is a problem, serious illness, or death.

I think your responses have been appropriate. I probably wouldn't go into much detail with someone who is just an acquaintance.

Downplaying your pain is quite rude. They ought to know better.

And Baby Makes Three said...

I know where you're coming from...when Claire was in the hospital people would always ask how she was and I never knew how to answer. Just understand that unless you've gone through it(which we have--and still are), you will never understand. People are so ignorant about the stresses that mom's like us go through. And although Claire's issues are much different in many ways to Brooklyn's, I still understand your post like I wrote it myself. You are doing an awesome job raising her, you can see it in that amazing little laugh on your video post. She is such a little Angel..((HUGS)) to you! Sarah

momofonefornow said...

You stick to your guns. Tell as much or as little as you want and if they don't like it too damn bad. Another way to look at it is that you are sorting out the wheat from the chaff. The people that are truly interested will continue to ask and be supportive. If they aren't truly interested why waste your valuable time and energy on them? Also, as far as the "it could be worse" people, I would agree with them that yes, it could be worse and then point out that they asked you how things were so you assumed that they sincerely wanted to know. (In a pleasant tone with a sticky sweet expression)

Plus, you always have us and we do care and sincerely want to know how she is and what the latest news is.

Momma Mary said...

I would say to tell people what they seem to want to know... And if they clam up, know that it is because people generally don't know what to say when the answer isn't "great!" or "Fine!" Start out with the positives and say, it's great that she's so smart! It would be better if she didn't have problems, but we're praying for answers and help there.

I get it though. I am super super sick and have to take meds for preggo.. So people ask how I am, expecting me to be all gooshy and happy.. and while I am very happy and know I'm blessed to be pregnant, I'm not exactly happy about how I'm feeling right now.

You are permanently on my prayer list!! :)

edie & ella said...

You are such a great mommy.....sure there are families that go through far more terrible things ie...death of a child, etc.....BUT that does NOT make Brooklyns issues any less important. She has had a rough start and has been through so much in her short little life so far...she is a great little angel and you are doing a fabulous job. I think people may just get uncomfortable and not know what to say so they end up saying things that seem to lessen the importance of your issue......keep up the good work!!!!! sam

Liz said...

You're right. It is very hard to tackle those sort of questions. I think people assume that the answer will always be something like "she's great" or "doing fine" or whatever. But when there is a negative or not-so-positive response, they're not sure what to do with that.

Sometimes while A&K lived with us, people would ask for the story about why they moved in with us. If they asked, I would tell them the truth. You should've seen the people cringe & withdraw because they expected me to say something all sweet & nice about the reason they moved in. I'm not sure what that answer would be, but they didn't know how to take "..their father was driving drunk & killed their mom. They were homeless at the time, so they moved in with us & we have custody now."

What I learned through all that is that it's not my responsibility to make other people feel comfortable. Life is not easy. Sometimes horrible things happen. Sometimes people get sick. Sometimes people die. Some life situations are not easy & comfortable and people should be ready for that when they ask open-ended questions. Once in a while "How are you today?" is going to be answered with "well I had diarrhea this morning." After all, poop happens.

Beth said...

I completely relate to where you're coming from and I think you handle the questions beautifully... and truthfully. Thinking of you!

Tori said...

I can't believe he said that. Your problems are very real and it doesn't matter if other people have it tougher or their babies are sicker. I know I was super stressed over my daughter's breathing problems and they weren't even that bad and they disappeared after a few weeks.

It's always tough to know how to answer the question, "how is your baby?" Sometimes people really do want to hear more than "great!" but you can never be sure.

L.G. Reeves said...

BIG HUG!!!

You and Dave are great parents. sometimes people just dont know what to say. Just smile and think how dumb people are ok?

:-)

Marinka said...

I found you through AllMediocre and I'm so glad that I did.

I'm sorry about your daughter's struggles and I'm sorry and sad about some of the responses that you've had. I think that part of our culture is that we say "how are you?" as reflex, almost, and don't really care about the answer too often.

My advice (which is easier to write than take, I'm sure) is to tell them exactly what you want to tell them. If you feel like you need to "talk it out", then do it. If you feel like keeping it "short and sweet", do that.

And I'm sorry, but the person who said "it's not that bad, could be worse" is a moron. Because all of our worries about our children are legitimate and our concern about them in no way minimizes someone else's struggle.

Good luck to you.

Sarah said...

Amanda,

I know how you feel...and my husband feels the same too. Both of my girls are special needs, have been for a couple of years. A few of our neighbors have kids...but none of them are special needs. Some of the neighbors have no kids.

They all ask, "How are the girls doing?"

None of them want a longer answer than, "They're doing well." If our explanation grows longer, or we start to really talk about the problem they have, their attention wanders. They increasingly want to talk about something else. Our story gets shorter and we shut our mouths sooner and sooner.

We feel like there's no one to talk to. Like we're alone. Like people want to care...but when it comes down to it...they don't know how. The things we tell them confuse them, or scare them. It's easier to smile and say, "They're going well."

My only reprieve came (appropriately) on my vacation. My aunt and cousin both could talk about it. My aunt is a BOCES (special needs) teachers aide, has been for nearly thirty years - since her son was born with Downs Syndrome. My cousin is his sister, and a schooled physical therapist for special needs. THEM I could talk to.

I hope you can find someone that you can tell the real story to. Find a support group, I'm looking for one (A couple years too late)...and I've learned over time that parents with special needs kids have an instant bond. We know each others frustrations...even if our stories are different.

All photos on this site are copyrighted. Please do not copy, download, or reproduce them without permission.