Saturday, January 12, 2013


When Juliana was diagnosed with Kabuki syndrome, it was easy to share the news (thank you, internet). The only people that I told in person were my parents. Everyone else was informed over Facebook or email.

As time went on I found myself faced with a new, unanticipated issue: how would I tell any new friends? When would I tell people? Should I just spurt out the news or should I wait for a quiet moment when it was appropriate to share deep secrets? I felt palpitations just thinking about it.

I remember the first time the opportunity presented itself. We were playing with some other kids who we didn’t know very well. One of the moms asked me, totally casually, if Juliana was crawling yet. Juliana was closing in on her first birthday. Obviously, she should have been crawling. She wasn’t. I simply said no, not yet. Later, I wondered if I had missed an opportunity to get it all out in the open: should I have said that she has developmental delays? Should I have revealed her genetic issue? How in the world was I supposed to do this? I 
distinctly remember that I wanted to pose this question to fellow parents of kids with Kabuki syndrome, but I felt pretty silly about it at the same time.

Some people might just like to lay it all out there. I think my husband is like that. I do remember one specific time where he asked a new friend “Have I told you about Juliana? She has a genetic condition. And look, here’s her feeding tube!” That’s not my style. In her book Bloom, Kelle Hampton writes about how confused she was when it came to sharing her daughter’s diagnosis. Her daughter was just a few weeks old and was on one of her first public outings to Target. During her pregnancy, Kelle had become friendly with a cashier who now rushed up to see the baby. I’m paraphrasing here as I read the story over a month ago, but in her uncertainty of what to say and wondering if people would notice based on the baby’s appearance, Kelle introduced her daughter to the cashier by saying “This is Nella, and she has Down syndrome.” The cashier’s face fell and she took a step back. Kelle decided that this was not the way to share the news.

It’s important to me that Juliana is known as Juliana, a little girl who is similar to lots of other little girls but who also has her own distinct personality (which is tenacious, hilarious, and adorable). I don’t want to identify her by her medical issues. At the same time, I am not trying to keep these issues a secret. See the conundrum? I don’t mind being upfront, but I also don’t want anyone feeling sorry for me or for Juliana. I would really prefer that they get to know her first. If they do, then they won’t pity her.

Over time I have developed my own way. It is fairly simple: I don’t tell anyone who I don’t feel like telling. You might be thinking “well, duh!” but you would be surprised at how some people - complete strangers - try to coax information out of you. Cashiers and receptionists have been the worst offenders.

In Road Map to Holland, Jennifer Graf Groneberg outlines her method of sharing her son’s diagnosis:

And to the question of whom we should tell, we decide this: tell anyone you want, anytime you want, only if you want. It’s nobody’s business, really. I don’t go around telling everyone that I was born with an astigmatism, though I imagine when I’m wearing my glasses people might assume something is wrong with my vision. If they want to know more, they can ask me. And if I want to talk about, I will. If not, I won’t. It’s that simple.
It can feel a little awkward sometimes not to offer an explanation or not to (over)share information. It was especially awkward to me when Juliana was an infant and I couldn't nurse her (or give her a pacifier, or even a bottle) when she cried. Thankfully we are now far past that, but now it is the difference in gross motor skills that is most apparent. A typical child Juliana’s age is walking and we’re still a ways off from that. I have an almost-two year old who just recently learned how to crawl. Maybe I’ll offer an explanation for that. Or maybe I won’t.

For those of you out there who also have a child with different needs, how do you handle sharing this information?

A postscript: Although the initial sharing of diagnosis is an awkward thing that I try to time carefully, this does not mean that I am opposed to talking about Juliana. Likewise I also discuss Calvin's strengths, weaknesses and challenges with friends and family and I see this as no different. Because parenting Calvin is an "ordinary" experience I've never felt driven to write about the process. Obviously I write about this journey with Juliana for the entire world to see and I hope that my posts convey that I am pretty much an open book. I really do not care - at all - who knows about Juliana's diagnosis. At the same time, I don't like it when I feel that I am in the position where I have to offer an explanation... but like it or not, that time eventually comes along every time I make a new acquaintance.


  1. UP until now I've been a blurter - tell everyone everything - but I'm coming to the conclusion that it;s not wokring for me, plus I don't want Sophie hearing that stuff about herself all the time (we always take two of us to the doctor so she can be outside with one of us while the other gives any bad news to the doctor)- so I'm starting to think I might just not tell anoyone anything until they ask. Except those that need to knwo like carers, kindy teachers etc. Migth change my mind again tomorrow though it's kinda complex and I'm not sure what the right answer is!

  2. oh we deal with this often! I have finally decided that these things are near and dear to my heart, and therefore I do not have to cast my pearls before swine. I agree! I share what I want when I want. But sometimes I am sad that I am forced to share for safety reasons. Oh well. Someday I will be strong enough to not care what other's think!