Rhiannon Louden explains how she shared the news of her daughter’s diagnosis of a life-limiting condition – news no one wanted to hear
We had our diagnosis confirmed. The people closest to us knew we had the meeting that day: they’d been with us from our first “We’re worried” moments to “We’re seeing a developmental paediatrician” to “We’re testing for Rett Syndrome.”
We had explained it’s a rare, neuro-developmental disorder that causes a progressive loss of motor skills and language with severe health implications… but that it (hopefully) might not be that.
The people who love us didn’t want it to be that either. They assured us that our odds were good, with only a one in 10,000 chance. They were optimistic, because the other option felt too hard to consider.
But now our worst case scenario was a reality. It was the severe, scary, devastating thing. And we had to let them know – while at the same time reeling from the news ourselves.
Telling our older daughter was the most difficult. Her reaction was raw and honest – an expression of grief she was able to release in the way that only a child can.
We couldn’t bring ourselves to share the news with anyone else in person, so we wrote a message instead, outlining the results of the meeting and what would happen next.
WHAT TO SAY
No one knows what to say to a parent who’s just had their child’s future pulled out from under them.
There’s nothing anyone can say to make it better. No one wants this for their child, their family, or themselves. But there are things people can say or do to make it worse though. Dismissive comments or reasoning or “Well, we will love them anyway.”
DISAPPEARING FRIENDS
Or they can disappear into the background. We were surprised (and hurt) by how quickly this happened.
I imagine, over time, more and more friends will do the same. It’s a lot: the pain, the empathy, the harsh realities. Much easier to distance yourself. On the other side of that though, we’re surrounded by an amazing group of people who’ve done the opposite: banded together for us. We know they’ll continue to do so, with words of support and strength, offers of help, check-ins, cards and thoughtful gifts. Friendly, open ears. Tears wiped away.
They told us they were in it for the long haul, that we could count on them, that they couldn’t understand what we were going through but they would be right there beside us, and Poppy.
How lucky we are to have these kinds of people in our lives. Our village.