Creativity, Cystic Fibrosis, Self

The GoldFinch and Diary of a children’s hospital

I have just finished reading “The Goldfinch” by Donna Tartt. Robin got it me for Christmas and it has taken me up til now to finish it! That’s what happens when you have a little one to look after, I used to be able to read a book in a week, now it takes me nearly 9 months! Luckily, or unluckily as you might put it, I have been in bed poorly with a stomach bug so I have had some time to finish it!

The Goldfinch by Donna Tartt
The Goldfinch by Donna Tartt

It was well worth the effort too, I really enjoyed it. Without giving away too much of what happens it is about love, loss and beauty- it is the story of one man and how a painting affects the whole course of his life.

Here is a paraphrased passage from the book:

“A great sorrow, and one that I am only beginning to understand :we don’t get to chose our own hearts. We can’t make ourselves want what’s good for us or what’s good for other people. We don’t get to chose the people we are….and I feel as if I have something very urgent to say to you non-existent reader, and I feel I should say it as urgently as if I were standing in the room with you. That life- whatever else it is- is short. That fate is cruel but maybe not random.That nature (meaning death) always wins but that doesn’t mean we have to bow and grovel to it. That maybe even if we are not always so glad to be here, its our task to immerse ourselves anyway; wade straight through it, right through the cesspool whilst keeping eyes and hearts open….it is a glory and a privilege to love what death doesn’t touch.”

So if you have nine months to spare give it a read!

Also this week I watched episode three of “Diary of a childrens hospital” which covered the story of Keir who has Cystic Fibrosis and one of his stays in hospital. It was quite a tough watch for a mom of a child with CF. Keir is 13 and wants to stop at a friends house for the night, but he has to have oxygen to sleep. He often stops breathing in the night because of the damage to his lungs and his friends mom is not comfortable doing his oxygen. Keir has some extensive treatment in hospital including IV antibiotics and physiotherapy to help him to see if he can have one night off oxygen so he can stay at his friends and be the same as his mates. When he enters hospital his lung function is at 30% but by the end of treatment it is back up to the early 90’s.

Treatments he endured regularly were his “nippy” which is the oxygen machine he has on at night to help him to breathe, 40-60 tablets a day, extensive physiotherapy sessions, and IV antibiotics every 2 months. It was a shock for me as a mom of a baby with CF to see a young boy suffering so much with the condition, he wheezed and coughed all the time and it was distressing to hear that he felt like he couldn’t do the things his peers could do.

It brought it all home when the consultant said that without treatment CF (the non “mild” version) has a near 100% mortality rate before teenage years.

I felt like I could really relate to his mom who was so upset that there was nothing she could do to make it better or take CF away. But it was also heartwarming to see how well he coped with all that life had given him, how he kept such a positive attitude and determination despite all the challenges he faces on a day to day basis.

It was hard taking a glimpse into what the future could possibly look like for Joe, but his is a different story and we can only do the best we can do day by day for him.


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