We decided to watch Best Interests on catch up last night. There’s a scene with the doctor talking to the parents about their baby’s diagnosis.
I sat and sobbed. Not because of Poppy’s diagnosis, but at how far she’s come.
In those early days, it really was a blur of hospital appointments, what ifs, and maybes.
It was, and still is, gruelling.
You never get over it.
You just learn to live with it.
It never stops. You learn to adapt.
First comes the diagnosis. Then visits to different specialists. Then sorting treatments, trying new medications.
Getting discharged from services you still need. Yes, this has happened, several times.
The first time it happened we’d been to the eye clinic. Poppy has a visual impairment and so we have spent many long hours there.
This particular day, when Poppy was six or seven years old, we had been waiting for three hours for the appointment and she started to have a meltdown.
Three hours for an appointment is a long time in anyone’s book. Poppy was distraught.
Then came the bombshell. We were told to leave and informed we had been discharged without even seeing the consultant.
We were made to feel ashamed.
But you have to pick yourself up, dust yourself off and start again. You have to keep going.
And you also meet people who are so unbelievably kind, they make up for the knock backs.
Like the visual impairment teacher I contacted after that fateful day. She promised she would sort Poppy’s appointments out, and said she would be there whenever we needed her.
And she was, and supported us for many years after.
Or the kindest, gentlest, and extremely intelligent paediatrician, Doctor Hoskyns, who helped us through the early years. Poppy and I used to look forward to his appointments.
Nothing was too much trouble for him. I remember him telling me to ask anything that might be on my mind.
One time, I remember wondering whether to ask a question as Poppy was non verbal at the time.
Should I be teaching Poppy manners, the same as I have done with the other children? It might sound a strange question, I suppose I was trying to find out what I should be doing differently with Poppy.
His response was so clever and well thought out, with the clear message – everyone needs to know how to treat others.
We were still under Doctor Hoskyns’ care when he sadly died after falling from his bicycle in 2015. Poppy, like many other children I’m sure, really missed those visits.
We were assigned a new paediatrician. Poppy was discharged from there three years ago.
We have to keep going.
