Friday, August 5, 2011

"She is so small, short, etc."

The first comment came when Fi was about 5-6 days old and I was at an indoor playcentre with her and the other girls. This older woman came up to me and chatted about all the usual baby mad things, "Oh she is so beautiful, so cute, how old... Wow, she is really short."
I was really unprepared, I guess at that stage we didn't have a confirmed diagnosis, we haven't met with our local LP group, the wound was rawer than raw... We were just released from the hospital a few days before being told that there was nothing wrong and I possibly just heard back that very morning from the specialist where I had sent the X-rays to get a second opinion that in fact she for sure had a skeletal dysplasia and the question was achon or hypo...
I just muttered to the woman that she was born pre-mature, which isn't even true she was born exactly at 37 weeks.
I actually felt bad for the lady, she was just making an observation, she had no idea that she just took a rusty knife and dug it right into the centre of my heart.
The funny thing is for now she is actually at the 15th percentile for height... a lady in the coffee shop this morning asked me how old Fi was and she gave me this worried look saying "She looks very small." I was thinking of the possible answers: a) yes because she has a rare genetic condition, b) stick with the immature story... I chose b), I guess these people are well meaning, but it is so ironic, absurd, this whole discussion, her worried look... I decided that in the future until she is more or less on the growth chart, I will just stick to saying "Yes, I am not exactly a giant either, am I?" (I am 5'2).
Once she falls of the growth chart I think I will just say that she has a restricted growth condition that makes her limbs shorter. I can't use the LP, or D word... to me they are labels, I know they are acceptable for lots of people, but I can't use them just now.

2 comments:

  1. Our son was born April 19, diagnosed with hypo May 6 and confirmed with DNA in June. My wife and I would like to contact you via email. Would you be open for this?

    ReplyDelete
  2. Hi absolutely, that's one of the main reasons why I started the blog. please feel free to e-mail me at: tinyhypo@gmail.com

    ReplyDelete