Showing posts with label story. Show all posts
Showing posts with label story. Show all posts

Wednesday, May 30

Fright

Yesterday at work, I had one of the more enjoyable tasks I do: filming rehearsals with the dance company for the new piece which is being choreographed. The new production is a telling of favourite fairytale Rapunzel, originally a European folk tale that was collected and retold in the Brothers Grimm book in 1812. There are several variants of the story which pre-date this, including Petrosinella in 1634 and Persinette in 1698 which all have in common the story of a witch stealing or bargaining a dearly wanted child away from her parents and locking her in a tower until a prince finds her and begins to visit her by climbing into her tower from her long hair. 

As a child reading the story, the bit we all focused on was Rapunzel being in the tower and sneaking her prince in while she falls in love before being banished by the evil witch: the stuff of drama and romance. As a more mature understanding, it is quite a complex story and there are more illicit and darker undertones. In many variations of Rapunzel, she is banished because she has become pregnant herself, which is how the witch or Dame Gothel figure finds out about the nimble-footed prince. It is as much about desire, sexuality and fertility as it is about princes and princesses and good conquering evil. But before this section of the tale, is the beginning whereby Rapunzel leaves her parents, which before I had never given much of a second thought to. Of course, it is just a fairy tale and has no basis in reality, but it is powerful the notion of parents giving up their child in any form, fictitious or otherwise. As I watched, I thought and reflected as a mother on how it might be to have my only child snatched by a sorceress (as you do). A lump rose in my throat-as a parent who has been through NICU I know all too well about separation and the fear that you may never get your happy ending. The idea that I might have lost the sunshine in my life made my pulse race and my thoughts strayed to real life parents who for many assorted reasons have either been separated from or lost their children.

The studio was warm and the dance was entrancing and emotive, and I happily sat with the camcorder in the corner when my manager walked in. She came over and said in a low voice.
"Your childminder has just rang; she's concerned about Wriggles."
My childminder never rings.
She has only rung about once before in over a year she has looked after Wriggles. She has a remarkably high threshold for sick or cross babies and is full of common sense and does not take things like this lightly. She will exhaust every avenue before ringing.

My little world suddenly slowed down and came to an abrupt stop.

I ran up to the office, stubbing my toe on the way out. Pelted up the stairs and shaking, scrabbled to find the phone and her telephone number. My hands fluttered and my heart was in my mouth as it rang.
Wriggles had had one her "moments" again. No one is quite sure what causes them, but every now and then she will get horrendous and prolonged coughing fits out of nowhere and become very breathless and chesty sounding. You can audibly hear copious amounts of secretions rattling around (mostly transmitted upper respiratory although they can also be lower respiratory too, particularly in her right lung which is the most scarred) and her breathing becomes very rapid with recession. Sometimes if she makes herself sick, they pass quicker but this is by no means a given, and it is usual for them to last several hours at a time. Although they have some similarities with asthma attacks, doctors are confident that it is not asthma. To me they seem to be connected to sleeping or feeding and the doctors have said it may be a side effect of reflux and chronic lung disease that hopefully she will grow out of in time. It could also be as her airways are still very narrow as a result of prematurity that any catarrh can block them very easily.


I left as quickly as I could, losing one sock in the process (later located in handbag: no idea how). Wriggles was calming when I got to her but still very chesty and breathing fast. She had not been able to take any fluids to help because of the coughing and chestiness and as I was nearer to the doctors than hospital I decided to cross my fingers and take her there and hope it was the right decision. Luckily it was, and we got to see a doctor who has seen these episodes before with Wriggles. It was beginning to pass after about two hours by the time we saw him: typical! He was very understanding though and found an ear infection and catarrh as well as advising use of inhalers and antibiotics for the next few days. Panic over... We returned home via the supermarket with some ice cream as a treat.

Wriggles went off to bed with some persuasion and I let out a long breath. Compared to some of Wriggles' escapades it was so minor. But there is nothing like reawakening fear to put you on high alert and dredge up memories and anxiety. Having seen some pretty horrible sights of Wriggles being on the edge that are burnt into my memory, every tiny and slightest threat brings them back to the forefront. Do I think that Wriggles having an increased work of breathing for a few hours will send us to Intensive Care? No, I do not. I know what merits an ambulance and an emergency and what merits scanning the shelves at Boots. I don't automatically assume that every single infection is life threatening. But living with memories is a curse as well as a blessing. Because for a split second, fear overpowers love and knowledge and you realise that you cannot ultimately protect your child from everything, try as you might. And that, is scary.

Tuesday, January 10

Book Review Monday

As this weekend I have been reflecting on time in SCBU and what it means having an ex-prem baby, I am looking at "Lyra and the Flying Fish" written by Peter Emina and illustrated by Alice Ridley. 


"It's a strange and dangerous world out there...
Lyra and White Rabbit were together from the very first moment. As the second moment arrived, Rabbit lay there with his head next to hers. He could feel her tiny breaths passing along the plastic tube the doctors had fitted to help Lyra's not quite ready lungs puff, pant & gasp. He listened to the air as it tickled his big furry ears.....
Peacefully floating on the surface of life, Lyra is very good at ignoring everything. But when her beloved Rabbit is taken away by an unschooled whooshing jumble of flying fish, Lyra finds herself caught up in an amazing watery adventure below the surface of the ocean. With the help of her new friend Timothy the turtle, she bravely vows to find White Rabbit at all costs.
Journey beyond the incubator and into the imagination with this highly original and beautifully illustrated tale of a premature baby."

This book was written and illustrated by a couple based on their niece who was born prematurely at 24+5. Lyra needed CPAP to help her breathe, which her mum (Alice Ridley's sister) would refer to as her 'snorkel'. This kick-started their idea for an underwater adventure to communicate not just a different and gentle description of life as premature infant, but also to inspire hope about getting through: an essential ingredient that anyone who has had experience of prematurity will know. Premature babies find touch and movement very distressing which will interfere with their wellbeing, so for long periods are in their incubators with a comforter. Of course their parents are never far away (most likely, say right next to them!) but the physical barrier can sometimes seem very overwhelming. 

This story touched me deeply as the mother of a premature baby born at 27+6 requiring breathing support. There is an intense side to the experience which is very tough to communicate, but this book very gently and imaginatively put the words down in a way that is not scary or upsetting. It is both whimsical, gentle and magical whilst clearly showing the fierce determination of Lyra and the friendship and comfort she gets from White Rabbit. I initially bought it as a way of explaining to my daughter about her start in life when she grows older, but upon reading it over and over again value it as much for the story which is a brilliant tale of adventure and friendship even if you have no experience of a premature baby. The illustrations are beautiful and really bring it to life. It slightly reminds me of the concept of Alice in Wonderland, but if she had a friend to go with her down the rabbit hole!