Sharing the Diagnosis with Daycare

We found out about Belalu's diagnosis a couple of days before we left town for a month and a half. I had already mentioned it to her daycare teacher when the Dr. suggested dwarfism at her 9 month appointment. I was in shock, because of the way he had said it to us, and it just came out in a conversation with her. So, when we got the official diagnosis, I followed up and told her it was indeed hypochondroplasia, as we had figured out. Her question to me was "Who do you want me to tell? Are you ok with me mentioning it to the students or would you prefer I don't?" (Belalu and Essie go to the Children's Center at our university, which has a strong early childhood education program. So in addition to each room having a main teacher, it also has a number of students who work there, usually for most of their time at the university, and a few other practicum students who are there a semester at a time, though some then are hired on and work there until they graduate. It's an amazing program, and has been rated one of the best daycare programs in the state.)

When she asked me that, I didn't know what to say at first. It's not like it was going to be a secret, but at the same time, I wondered, do all these students need to know, especially those that will only have contact with her for a few months? I asked J when I got home, and he said, "of course she can tell them- it's not a secret." I couldn't really say why I still hesitated, but I did wait a few days before going back and telling her that she could go ahead and mention it to the student staff. Then she asked me to repeat again the name of her condition, and I told her, but I said that all she needed to mention to the other staff is that Belalu has a bone condition that restricts the growth of her arms and legs. I also emphasized that at this time her condition would not affect her mobility in the classroom or call for special treatment. Then she said something that surprised me- the students had already noticed that her arms were short. I think I've mentioned here before how I'm so used to her proportions, that they don't seem unusual to me. If you work with children all day, however, differences are more obvious. When she told me that, I realized that I had been hesitating to give her the go-ahead, because deep-down I was thinking that if they didn't know she had a condition, they wouldn't notice she was different. Ridiculous, I know.

Essie and Belalu started back a daycare this Tuesday, and last weekend I decided to email the program director, who is also someone I interact with on campus for other things, and tell her about Belau's condition. She will likely be here through preschool, so I figured the sooner they knew, the better prepared they could be. I cc-ed the infant room teacher and attached a .pdf file of "It's a Whole New View," the parents' guide from the Little People of America's website. She responded that she didn't know about Belalu's diagnosis, and has not worked with that condition in the past, so "we can learn together." She also thanked me for sharing the guide, because it answered a lot of questions. She closed the email telling me that Belalu will surely thrive in such a great family and with the teachers there. Once in a while I still picture them all in a staff meeting, being "updated" on her condition, but I just have to let it go. Yes, people will talk about her. However, with her personality, I doubt that they will linger long on her condition. There'll just be too much other great stuff to say.

Sharing Our News: Family

Since we are visiting friends and relatives, I didn’t want to have to explain Belalu’s condition over and over, so I decided to email everyone before we left. And then I sat staring at the screen.  How much should I tell them? How many details to include? What details can I include, if we don’t know how this condition will manifest itself for her?

I thought about the term “dwarfism.” I almost didn’t include it, but then I decided that I had to. If I just use the medical term and explain its effects, people may not really get how significant this is. Part of me believes that in terms of who she is, hypo is a very minor part of Belalu as a person. However, I would be naïve if I didn’t recognize that it will shape who she is as she gets older. So, if I didn’t explain that hypochondroplasia is a form of dwarfism, I felt like I was only telling part of the truth. However, I also knew that as soon as I put that word out there, it would be impossible to remove from people’s minds. In the end, I did include it. I just felt like I would be trying to hide or gloss over the truth if I didn’t. (This is for family and friends- not random strangers or even acquaintances I run into- for those folks, I do not mention dwarfism).

I also have become aware that the way I tell people about hypochondroplasia reveals my own concerns. I almost always say, “Hypochondroplasia is a milder form of dwarfism,” as if I’m trying to soften the blow of the news (For them? For me? For both). Yes, it may mean she’ll be taller than if she had another form of dwarfism, and/or she may have less medical complications, but really neither is necessarily true. But I tell myself that it gives people something to cling to when they don’t know what to say. “Oh, well that’s good! At least the complications aren’t too severe.” Or something to that effect. Really, though, I’ve come to realize that that little word, “milder,” has helped me to cope with all the unknowns. Rationally, I know that she can still easily have complications or may have problems fitting in with her classmates at times, but it’s just as possible that she won’t. So, I’m choosing to envision positive scenarios when I think about her future.

Sharing Our News with Friends

We have only just begun to tell people about Belalu, because we have only just found out ourselves. I don't really have a set way to bring it up, though many times people will say "She's getting so big!" and I'll laugh and say "funny you should say that..."

Thing is, this is shocking news. Yes, she had complications early on, so many people have been asking all along "is everything ok now?" And I was telling them "yes, it must have just been one of those things. She's totally fine and doing well." And now, the story has changed again.

So, people don't know what to say. I get it. Three weeks ago, I would have had no idea what to say to a friend in a similar situation. Almost everything, though, has been what I needed to hear, because I know it's coming from a good place. Besides some comments I won't even share because I'm sure they were from shock and resulted in temporary stupidity, the only thing that has rubbed me the wrong way is when people say Belalu "is perfect in her own way." It's the last four words that get me. Just stop at "perfect."

What I really don't want people to do is to assume how I feel about Belalu's condition, and react "for me." I don't consider this bad news, so please don't treat it as such. The best thing to do is to ask me how am I feeling, so you can react accordingly. Technical questions are fine, too.