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  • Writer's pictureCasper de Leuw

"You're the best husband I could ever imagine"



The last few days have been rough. Rough in many ways, and exhausting. So exhausting...

Up until last Thursday Angele was calm. Sleeping a lot, having fits every now and then, waking up, eating, talking a bit, and sleeping. In between she was meditating. She had good days, and bad days.


Thursday was a really good day. She sat in the wheelchair again, and this time moving her back to bed happened without fits. She ate, was alert, was joking around. But then from the evening she became restless. Possibly from withdrawal symptoms due to medication changes, but I will discuss that with the doctor tomorrow morning. But regardless of the reason, it was exhausting. She kept twisting and turning, but without physically being able to twist and turn it meant she was calling me every few minutes so I could twist and turn her. When she finally calmed down around 2am, while I was still listening to check if she really stopped pulling her diaper and her needle for the medication (which she pulled out later that night anyway), Tobias woke up. And that pattern happened again and again since then. Long story short: my average night has been 3-4 hrs of sleep since Thursday. Either Angele, or Jessie, or Tobias, or all 3 taking turns throughout the night in keeping me awake.

And even throughout the day when I used to be able to catch a few hours of sleep I've been disrupted. Either by Tobias needing to be picked up earlier since he was a bit unwell, or Angele being too restless for me to sleep, or needing a nappy change.


One thing I realized last week is that whenever I share pictures, I share the good ones. The ones where she smiles, where she is alert. You all get to see the good bits. For me, that's a few moments per day, if I'm lucky. I am not complaining, but at times it is hard to stay patient, energetic, happy, and positive on 10 coffee and a few hours of sleep a day.


And then last Saturday afternoon, out of nowhere, Angele was alert, awake, and smiling lovingly. She looked at me, and said "you're the best husband I could ever imagine". I asked her if she could say it again so I could record it, and she did!

Those are the things that keep me going. She's been at home now for 5 weeks and I am still extremely happy with the decision to take care of her at home. The hardest part I think is not the care for her because that comes naturally, but arranging everything around it. Play dates for the children especially with school ending, and summer school not starting yet. Making sure there's always someone else in the afternoon and evening. Most of all though making sure I have enough time for myself; that is the hardest of all.

So, "the best husband" now needs to take care of himself. I've been staring at my screen for 45 minutes now while every now and then checking on Angele. I need to go meditate and sleep, and as of tomorrow I will put more focus on actually taking more time for myself.


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