Lyra

Sorry for the month-long absence. I do enjoy blogging but I've not felt up to it recently as I've been fretting over Lyra, our five-year-old grand-daughter, who has deteriorated over the past couple of months ending up in hospital two weeks ago. She was diagnosed with Pervasive Refusal Syndrome, a condition when a child stops eating, drinking, walking, talking and refuses personal care.
`Happy times

Lyra didn't fit the mold on all the above as she doesn't refuse all personal care and also only practises selective mutism, but it was thought that given time she would develop the full-blown syndrome.

It was very hard to see her being fed on a Nasal-Gastric tube in hospital, but fingers crossed it seems to be doing the trick and she's put a couple of kilos on and no longer looks skeletally thin and according to the nurses is now a bit of a chatterbox. She hasn't as yet attempted to walk but everyone is hopeful that this will follow on if she starts to eat regularly. In fact she's made such a phenominal recovery that the psychiatrist is saying he no longer thinks that the diagnosis is correct and the paediatrician is saying that they'll now just treat it as a set of symptoms.

P and I were hoping to go to Wales for the first time since I became ill, but sadly we both got a stomach bug, so we've been marooned here in York, trying to feel well and having to stay away from Lyra in case she caught it as then, as once before, she would vomit up the NG tube.                                    

However, she's in our thoughts much of the time, reminding me of the song I wrote for her a couple of years back, that's constantly playing in my head - it's called Walk Tall. It encapsulates everything I wish for Lyra, I've posted it before but here it is once again for those who missed it.


 

WALK TALL
Walk tall, you can touch the stars in the sky
If you believe you can do it, you can climb the mountains high
Your tiny legs won’t fail you, they’ll keep you safe from harm
Walk tall, little one, walk tall and keep calm.

Run free, chase the wind around the trees
The world is full of wonder, just waiting for a key
Unlock the door and step on through, with feet as light as air
Run free, little one, and shed your woes and cares.

Your eyes will sparkle once again, your smile will light the room
Walk forward into happiness, the future’s there for you…
If you walk tall.

Step lightly through the rainbow, approach that pot of gold
Imagine some new stories like the fairy tales of old
Life’s mysteries and problems weigh heavy in your head
Step lightly, little one, and learn to trust instead.

Your eyes will sparkle once again, your smile will light the room
Walk forward into happiness, the future’s there for you…

… the future’s waiting for you if you walk tall.

P and I are beginning to feel better and more able to enjoy the garden that's practically burgeoning in front of our eyes right now. We're hoping that every passing day brings Lyra a few steps closer to full recovery.

Thanks for dropping by.

Comments

  1. Dear Jean, your song is lovely, and it's grand to hear that Lyra looks to be responding so well to the hospital care. She's an adorable little girl, and so fortunate to have you in her life.

    Hoping you and P will soon be able to make the journey to Wales. xo

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    Replies
    1. Thanks so much for this Frances, your kind words always make me feel better about things. Just heard that Lyra's weight hasn't gone up over the past week, so a bit of a blip, but trying to stay positive and hopefully it will pick up again this week. Hope you're enjoying the same wonderful spring weather in NY that we are here. Had lunch in the garden for the first time this year yesterday :) xox

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    2. Yes, Jean, do stay positive!
      Our week's worth of rainy weather is beginning to lift. It's been a good week for knitting and reading and visiting a fabulous Costume Institute exhibit at the Met. I've got some photographs from that show over at my site that I think you would like. xo

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