Instagram has become an obsession… What was once a place for my food photos has now become an Audrey micro-blog and a place where I am part of a DS community. It’s an amazing place for inspiration… Little ones walking, talking, starting school… positive images of families going about their life with an extra chromosome in the mix.
But there are downsides to following these other mummies/families… Operations, sleep studies, hospital visits, illness, delays in development, disappointment… We are all sharing our lives and this includes the downs as well as the ups… But the thing is, we are all very different. Kids with DS may share characteristics, but they are all still individuals and have varying needs.
For the most part I have avoided medical information on Down’s Syndrome. I pick up snippets of info from other people, but on the whole it’s not fun to be worrying about Audrey going back on oxygen, having an op to remove her adenoids or losing her hearing. Unfortunately, following these other T21 families has exposed me to some of the possible issues Audrey might face and have also led me down that unhealthy unhappy path… Comparison.
I’ve seen on more than one occasion this quote posted on IG:
“Comparison is the thief of joy”
And indeed it is.
It’s fine seeing Audrey’s ‘typical baby’ friends walking, talking, growing… But what about a baby with DS very close to Audrey’s age doing things Audrey can’t do? It’s tougher to be relaxed, I guess because we all have high hopes for our kids, even if from the outset they have something about them that prepares us for delays. Our expectations for Audrey are that she will be the best that she can be (and believe me, I don’t mean we’ll be pushing her and forcing her), we just expect her to be the best downsie ever! So when you’re following the progress of another little one and they are signing/crawling/holding their bottle and your child isn’t… It’s hard not to feel… Deflated.
The best advice I can give to anyone else in this situation is to focus on the positive and, as Wayne would say; “Live in the now!”.
Audrey is currently getting on just fine, with no major health issues. She sits up all day, she waves, claps, rocks to music, feeds herself finger food, attempts to hold her water cup, nods when we nod, plays peekaboo, babbles all sorts, hey, when I start to list things she can do a lot! Phew!
Daddy and Audrey x
2 thoughts on “Too much information?”
Yup I hear ya! I have to check myself with this a lot. Benny is progressing much slower than his therapist would like. He is way behind, in their words, where other babies with Down syndrome should be by his age of 13 months. I try not to compare, not to worry, but dang it all it’s just difficult. xoxo
I think it’s a bit harsh of Benny’s therapist to tell you that. What is “average” development anyway? Who can say?
I was a bit worried when I couldn’t get Audrey to sit up and her physio was really kind about it, she just told me to chill out and that there was no rush. Plus, one day you’re worried and then weeks later you realise you forgot to note down how old they were when they first did whatever and you’ll never remember precisely when that was!! Oops. Then you realise no one (but you) will really care when your child first fed them self a blueberry! Ha. They will all get there in the end! X