While standing in a store’s check-out line earlier this week, I was asked the question that’s usually first out of the mouth of strangers if they stop to ogle your baby. “How old?”. 12 months, I reply. And they go on about so and so is 12 months too! Their birthday was on December 18th. And their enthusiasm starts to slow, I could tell, without even really looking at them…the wheels were turning in their head. Declan still stays in his infant car seat while we shop, as he’s not yet able to sit independently. They didn’t say anything further, and I stepped ahead to pay for my items.
October is Dwarfism Awareness month (DAM), and this past October I decided to use Facebook as a platform to spread awareness about dwarfism and achondroplasia. It was also the first time I stood on my soapbox and proclaimed (via Facebook) that Declan indeed has achondroplasia. Now all of my family and close friends of course already knew, as he was almost 10 months old on October 1st, but there were those Facebook friends that are more acquaintances or people you’ve lost touch with but use FB to keep in touch. Anyways….on my first post about DAM I had someone comment that ‘wow, they didn’t know about Declan and you couldn’t tell from my photos’ (paraphrasing).
It’s true. Especially when they are newborns and during those first few months…babies with achondroplasia look and seem like your average baby. Kind of.
Right after Declan was born, I thought he was perfect. There was nothing my eyes could find that would indicate to me that something was ‘wrong’. Perhaps, though, that was my hormonally fueled rose coloured glasses.
When Declan was 7 days old we had an appointment with a geneticist in Victoria. After divulging every detail of our family medical histories, she did a physical examination of my baby. She also had a student with her, so the geneticist was saying out loud the features that indicated that Declan may have achondroplasia. Frontal bossing, flattened nasal bridge, hypotonia (low muscle tone), ‘trident’ hands, enlarged head, rhizomelic (meaning upper part of the arms and legs) short limbs.
My perfect little baby was verbally being taken apart, looked at body part by body part…and at the end put back together and told, yes, they strongly believe he has achondroplasia. While the karyotyping (chromosomal) tests took a number of weeks to deliver the concrete evidence, I knew and believed that achondroplasia was what we were dealing with after that meeting.
While these features were there from the start, I really didn’t see them myself until the geneticist had him in her arms and was checking off her list of achon features. After that…I could see them. They stood out to me.
It’s curious what people notice. I know most probably don’t notice anything too different at first glance. Last year we went to Strongstart (a drop-in preschool type program) very regularly. When Declan was just a few weeks old, I shared with the teacher (through a few tears, I remember) Declan’s diagnosis. While she didn’t know exactly what was wrong, she had noticed that his tiny, newborn hands and fingers looked different. As a teacher/ECE for 30 years (in fact, she was my preschool teacher when I was 4!), she has seen many a children’s hands. That was the difference she noticed.
Now…I don’t notice them as much, those achon features, he’s just my little boy who looks just like his big sister. But as he gets older and the discrepancies in his size and physical abilities became more apparent, I am going to have to prepare myself for the odd looks and ridiculous questions. I have chatted with POLPs who have older children with dwarfism, and I know what’s coming. My goal will be to try to remember that just one year ago, I too would have thought how unbelievable it would be to have a baby with dwarfism. It’s not something most people encounter everyday (or even in their lifetime, for some). I will try to use those opportunities to educate. But at the same time, he’s my baby …and sometimes the mama bear might come out.
It’s strange how much can change in just one year. I’ve come to realize that he may have these physical features that are ‘different’, but deep down… we are all more alike than different. He’s a happy baby who constantly wants to be on the move. He searches the room for his big sister, who he can’t wait to keep up with. He loves his mama something fierce. He trusts those who have been there for him, flopping himself into his grandma and grandpa’s arms whenever he sees them. He’s curious and strong. Lovable and full of joy. Nothing has ever felt more normal and right and exactly how it should be.