24.12.19

Our daughter has been having a rough time with her health recently and has spent too many days lying on the sofa feeling wretched and unable to do the things she loves to do the most.  There have been no trips out to the cinema or cafe for her, no poodling around with her PAs people-watching. She’s been confined to barracks. 

Her PAs have been good at keeping her company and finding things to do while she’s snoozed or stared glassy-eyed at the screen. They’ve cooked her favourite meals, read to her, sung, massaged her feet, soothed her fevered brow and given her space when she’s needed it. When she been anxious they’ve done their best to reassure her and calm her down. They’ve administered an increased amount of medication too.

A couple of weeks ago they decorated our Christmas tree with the baubles and lights we’ve collected over the years, set out our wooden Santa Clauses on the window sill and brought out the Christmas dvds which she so enjoys. (The Snowman remains firm favourite.) Christmas was on the way and they were ready.

One of the PAs made a photo album of the year.  She edited the many digital images we’ve amassed since January and produced a fine record of our girl’s activities throughout the year both at home and out in the community, and with friends, her team and us. The printed pictures are colourful and bright and represent happy and optimistic times. They’re a lovely aide-memoire for all of us.

We have very few pictures now showing our daughter’s expressions of pain and discomfort, her exhaustion and disorientation during those awful periods of poor health which so dominate her life at the time but which then so quickly disappear as she starts to feel better and re-engages with the world. The medics no longer need to see them to get an idea of what we are dealing with; they know. And we need no reminding thank you very much. The PA understood this when she made the album.

Last night a friend brought us some woollen pompoms her young son had made for the tree. He thought our daughter would appreciate their strong hues and soft texture. I hung them in a prominent position at the front of the tree, took a photo and sent it to him so he could see his work in pride of place. The wooly balls look so vibrant and arresting. He was thrilled with the photo.  Our daughter will explore the tree properly when she’s up and about again I’m sure.

It’s suddenly Christmas Eve and we have been rudely awakened from a deep sleep by a PA ringing the door bell. Is it morning already we ask ourselves? It seems as though we have only just gone to sleep and our daughter is snoring quietly. She finally settled at around 6 a.m if I remember correctly. The PA has tickets for The Muppet Christmas Carol and really wants to take her for an outing. When they eventually leave the house, my partner and I heave a sigh of relief. Please let it be a Happy Christmas!