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Saturday, January 29, 2011

The Week of Speaking Before Thinking

I missed 3 days of work this week because I was sick, which means that I spent a grand total of 15 hours interacting with people.  Within that 15 hours....

On Monday one of my outatients asked me about Gracie.  She said that she had wanted to ask for quite some time, but didn't really know how to ask.  This woman is educated - she's a registered nurse (who should be retired, but still works home health and roving health fairs one day a week to pay for her horses).  After hearing a little bit of Gracie's story and finding out that she likely had Down Syndrome, she looked as me and said "But you know, Honey, if she was Mongoloid and going to have all kinds of health problems, it really is probably better this way..."  Blah, blah, blah.  Seriously?

Fast forward to Friday.  One of the students that I see at school had a substitute personal care nurse with her.  I've met this women before, with another student, but apparently I haven't run into her since I was pregnant with Gracie.  I come into contact with so many personal care nurses and therapeutic support staff personnel as I move from school to school that I have a hard time keeping track of things like this.  I knew it had been a while since I had run into her, but I didn't realize how long it had been.  In the big picture, it's really a small pool of people working within a small pool of students, and they move from case to case quite frequently.  (I could poll 20 nurses or personal care aides, and at least half of them would have a list of 3 or 4 other kids from my caseload that they have worked with over the last year or two.)  Anyway...this woman yesterday asked how my 'little one' was.  I gave the standard answer "Oh, she's great.  She's growing like a weed, which is what we want!"  She asked how old she was now and I said "just about 4 1/2 months."  She gave me the most bizarre look and then her eyes lit up and she said "Oh!  You have a second already!  Oh, my!!"  And before I could get a word in, she asked about my "first."  She asked it was a boy or girl, and how old now, etc.  God love the third grader I was working with...she didn't miss a beat.  She said "Oh, Miss Nancy, Miss Susan's first baby died."  Even kids with 'special needs' don't miss a thing.  The nurse said something to the effect of "Oh, Honey, Miss Susan's baby didn't die", to which I responded, "Actually, she did."  Enter the seemingly eternal blank stare.  I filled her in as much as I could in front of a third grader, and she gave me the same response that I got from the patient in my office.  Seriously???  WTF???

I don't get this much anymore, so it seems a bit odd that I got it twice this week, especially since I only worked two days.  But seriously, it's been a year and a half.    I know that these comments are just misguided, and that they are really meant to be supportive, but still...  I am happy to say that it doesn't have the scarring impact that it did a year ago, but it does sting a little bit sometimes to have someone tell you that your kid is better off dead.  Yes.  I am sure that we would have faced some difficult situations later in life, logistically speaking, that we don't face now.  Yes, there probably would have been a few health concerns.  But that's part of life.  Down Syndrome or not, I would have loved Gracie fiercely every single day for the rest of my life.  Nothing can/could change the fact that she is my daughter.  Nothing.  As it is, I will still love her every day for the rest of my life, just not how I was expecting.  I guess this is just hard for people to much as I hate to admit it, it's nearly impossible for anyone to accurately 'imagine' being in our shoes.  The only way to really understand is to be here.  As much as I would love people to understand, I wouldn't wish it on anyone.  Ever.

It is what it is, but I am just amazed by how naive people around us really are.  Still.  


Big Love, Big Acceptance - or so I say said...

I hear ya. I've keep becoming more aware of how, unless someone else has experienced the death of their baby, they just can't quite get it, even as much as some kind people would like to.

My recent examples include seeing some friends last night. One couple - very sweet, kind, caring and supportive of our journey - they had their first daughter about 2 months after Acacia was born and died. I saw them last night and the woman was asking how pregnancy was going and I said it's going OK, but I'm quite anxious this time and can't wait for our girl to get here so I know she gets here alive and well. At first she kinda looked at me like she was processing this...why would I be SOOO worried and SOOO anxious about something going wrong???, then I could see it click in her mind - RIGHT, your baby died, of course you're worried. To me it seems so obvious and normal for me to feel more anxious, but I'm reminded that not everyone gets that, or at least not right away.

I'm sorry to hear that woman said those awful words about it being better that Gracie's not here. I usually have to assume people making such comments "mean well".... but still, such comments take my breath away.

Malory said...

Ugh. I am so sorry Susan that you have to deal with these hurtful comments.

Heather said...

People can be so tactless...I'm so sorry you had to hear those comments.

jamie said...

Ugh, I am sorry. Sorry you had to hear that and sorry for them that they don't understand unconditional love for one's child.

Maggie said...

Oh man! Sorry you had to deal with that, not once, but twice all in one week! I know they think it's "helpful" to us, but I really wish they would just say, "sorry" and end it there. XO