As parents you feel helpless, doing everything you can to keep your daughter alive but in essence most of it is a waiting game.
Waiting in desperation trying to find a bed anywhere in the country to get the help she needs.
Waiting while day by day you watch her slowly slip further and further away.
Waiting day and night wondering if she will still be with you every morning.
Waiting by the bed at night making sure she is still going.
Waiting for that phone call to tell you yes, there is care out there and there is a bed with specialist help.
Getting that phone call having found a bed 4 hours away in Norwich but waiting a couple more days before she could be admitted.
Finally that 4 hour drive with your daughter curled up on the back seat of the car, hoping she survives the journey there.
Then waiting months and months, a year, to see if the treatment has worked.
Watching her slip back, waiting for her to be taken over again by the illness, trying desperately not to let it happen, and to go through it all again.
And now, all those years later, finally recovered, waiting with happiness to see how the rest of her life makes up for all those lost years 💕