How's her heart?

When we first had Maybelle, I was on an emotional roller coaster. Five days in the hospital (for me), another five for her, and the physical and emotional stresses of giving birth were all pretty demanding, and I needed time to isolate and recover. In addition to all that, I had to process and come to terms with the fact that Maybelle has Down syndrome. I was emotionally vulnerable, and I didn't want to have conversation after conversation where I broke the news about Maybelle's diagnosis to friends and colleagues. This is mainly because I didn't want to have to navigate their uncertainty or their expressions of sorrow. When a neonatal doctor in the nursery where Maybelle was staying looked at me sympathetically and told me she was sorry and that she knew this must be hard, I thanked her but told her, "I don't want my daughter's life to be taken as a tragedy." I didn't want to have that conversation again and again.

Biffle had a conversational strategy for this. When he was talking to friends or fellow musicians about Maybelle, he'd tell them when she was born, how big she was, how she was doing, and then say--very matter-of-factly--"Oh, and she has Down syndrome." Usually his tone managed to forestall expressions of grief. But I didn't want to have to navigate these conversations at all, so I had the close friends who'd been there in the hospital with me send the word out through the friend networks and the College of Charleston campus. I wanted everyone I encountered to have worked through their own awkwardness or whatever by the time they came into contact with emotionally fragile me.

What this has meant is that I'm not always sure if someone I'm talking to has been reached by the grapevine, if they know that Maybelle has Down syndrome. It generally doesn't matter at all, particularly now that I'm not emotionally fragile about her diagnosis, but in some conversations I do want to know if we're all on the same page. I've discovered that the code people will use, to clue me in that they know, is to ask, "How's her heart?" If someone, out of the blue, asks about my child's heart, then I know they know she has Down syndrome, and that they know enough about ds to know that many children with it have heart defects. It's an interesting code. Very polite and southern. Cracking the conversational door open, but not forcing anybody through it. I sort of like it.

For the record, Maybelle's heart is just great. And, these days, so is mine.


Rebekah said...

I have followed your blog for awhile (found it through Skirt! when you were the blogger of the month, or whatever they call it, and also because I recognized your name from a C of C newsletter as I graduated with a Women's Studies minor from the College - anyway, enough about me) - I really like this post and your honesty about where you were and where you are as Maybelle's mom. I read your post months ago about your decision not to pursue a bunch of additional tests when you were pregnant. I don't know that I will have the courage (or faith?) to NOT have those tests when/if I become pregnant (I will be one of those "Advanced Maternal Age" women - makes me sound like I'm 147, not 36) and I have concerns about having a child with needs I don't know that I could manage (though I also don't know that I couldn't). I admire the way you all have blogged about your little one and, not knowing you except through this blog, have thought you have beautifully "normalized" the very normal act of having a baby and yes, a baby with special needs (I dislike that term - not sure what makes one person's needs "special" and another's needs just "needs." Sort of PC b.s. that makes us feel like its okay to categorize/label someone as long as we do it with "nice-sounding" words). I'm not sure where I'm going with this and hope that it is coming out right and not in any way offensive. My intent only to express my respect for what has appeared to be just two people who had a baby and who have introduced her to the world (at least through this blog) as just Maybelle - which is all and everything she is.

B_guest said...

Pregnant person here, I wonder if you now agree with those recommend testing for the sake of knowing in advance anything you can about your baby.

I wonder if this would have freed you up after the birth to worry less about other peoples' reactions.

(And by the way, speaking as just some other person, learning someone has had a baby always makes me feel that happy-for-them-jealousy.)

Alison said...

Rebekah, thanks so much for delurking, and for your comments. And how cool that you're a former WS minor!

B_guest, you ask a good question. I'm glad that we didn't do additional prenatal testing to find out that Maybelle had Down syndrome because I think I would have spent the rest of my pregnancy freaking out. The thing that has helped me not to freak out about Down syndrome is getting to know Maybelle herself. When she was still in utero, I would have had nothing but my own anxieties--no relationship with an actual person to help calm me down and ground me.

I think, though, that this is a very personal decision, and what was right for me might not be right for someone else.

Kaethe said...

I think I understand how you feel about Maybelle. I see the same overt I-love-this-child-as-she-is sentiment in posts by the parents of children who've been diagnosed with some form of autism, or cystic fibrosis or anything else. Our first daughter had a heart defect at birth, which has long since resolved, but that last day in the hospital with the tests and the uncertainty was nerve-wracking, and hard to discuss.

Maybelle is adorable, and I enjoy following you and Biffle as you discover more to love about her.

Elizabeth said...

Good for you. I'm glad that Maybelle is enjoying the love of her parents and that you are enjoying having such a precious baby.

Tawanda Bee said...

I so get that code thing, and I so get the fragileness of stepping out in public. When someone tilts their head while saying "how are you,?" then I know that they are referring to that part of me that lost a son...

I can step out in public just fine on most days. I still get whacked every once in a while, but mostly it is fine. And when I get the coded question, I simply smile and tell them I am fine.. a coded answer!