I was talking to Ernest the other day. Ernest is our partner in Titien’s rainbow project providing help to school kids in remote Indonesian locations. He apologised for not yet having delivered all the shoes we bought with your help for Titien’s last project. Unfortunately, the travel restrictions in Indonesia due to the coronavirus-pandemic will also prevent this project from being completed in the near future.
Your donations after Titien died are still here on my accounts. I don’t want to wait indefinitely until I put them to good use. So I topped them up and asked Ernest to suggest an alternative educational project to help also in these times.
He came up with a project I think is worth supporting. He wants to help teachers who were not getting a salary during school lock-down – but who are still teaching kids remotely. He suggested to financially support 35 teachers in the Magetan Regency, East Java with your donations. The photo on top of this articles shows some of the teachers in 2019, before the pandemic.
I would like to transfer the received donations soon, so the teachers can be paid before Christmas. I hope you are happy with the use of your donations for this project. As usual, to make sure the funds reach their intended destination, the project will be documented photographically – and published here on the blog.
I wish you all a stress-free December. Stay safe and healthy.
Hello, this is just a short update on how things are going. I am not sure I should keep writing here, after all, this is Titien’s blog and now it is only about me. Anyway, I am doing ok. I moved houses and it feels like home already. I am back at work and I get things done, I am functioning.
Two weeks ago was Titien’s funeral, she died today four weeks ago. I just would like to post a short update here and thank you for your continued thoughts, prayers, words of support and donations to Titien’s charitable project. I also would like to apologise for not replying to every message and every comment, as Titien certainly would have done!
It is one week today that Titien died. The sadness comes and goes in waves. Thank you very much for all the comments, memories, and words of support. I am overwhelmed. Titien touched everybody she interacted with and she was the love of my life.
The day before yesterday in the late afternoon Titien had a breathing rate of 35 breaths per minute while lying down. According to Wikipedia, 12-18 is normal for adults. It became better in a sitting position. She wanted me to stay with her and not get on my road bike on the balcony to pedal on the bike trainer for an hour.
Titien and I have a mantra that we’ve been following at least since her being dignosed with DIPG: live in the here and now. What sounds like a hackneyed phrase from the self help literature is actually meaningful to us. We have realized how valuable the time we have left is.
She sleeps a lot or dozes off. The tumor in her brain stem paralyzes all her muscles. She can no longer hold her head and if I or an armrest does not support her, she tips over on the sofa or out of the wheelchair.
Titien and I are both writing about how we deal with her illness. Especially now that she is getting worse and worse, we get a lot of encouragement, good wishes, offers of help and suggestions on how we could better organize her care.
My wife was diagnosed with a brain tumor in the spring of 2017. A side effect of the biopsy required for this was that she was no longer able to swallow and had to be fed through a feeding tube for weeks.