\nSuddenly, I was faced with the impossible choice between a tracheostomy and death.\u201d<\/em><\/p>\n
She picked the tracheostomy and spent four months in hospital before being relocated to a nursing home. That\u2019s a scenario I want to avoid at any cost. <\/p>\n
Ward<\/h2>\n
Now that Floor has moved out, it\u2019s up to Ward to keep our spirits high. He\u2019s such a treat. By day, he\u2019s usually in his room, but at 20:30 he goes back downstairs to watch TV with me. Together, we decide on what to watch. The only times he misses TV night is on days when he has football training. And watching is a strong word, he usually intermittently checks his MSN on his PC. Ward feeds me bits of chocolate and adjusts my blanket and backrest whenever I ask him to. Hein does the heavy lifting when putting me to bed, but Ward always comes by later to fix the minute details. Positioning the pillow underneath my head is a matter of finesse. Ward is very patient.
\nHe\u2019s also a great cook. His favourite dish is tortellini, one he perfected when he was only thirteen. The same goes for salads. Normally, kids don\u2019t learn how to cook when they\u2019re thirteen. Then again, normalcy is few and far between in our family.<\/p>\n
Twenty years<\/h2>\n
Next month, we\u2019ll have lived in this house for twenty years. I\u2019ve been sick for roughly half of that. It\u2019s an odd thought. In those two decades, we\u2019ve had three fireplaces, replacing the old-fashioned stone one with granite, which in turn was replaced by a romantic one adorned with a mirror. Optimistically, we ordered a lot of firewood. Optimistic, because we\u2019d never actually used the fireplace before. Before we knew it, the whole living room was engulfed in smoke. Once, and never again we thought. We had some specialists look at the chimney, but apparently they thought it was a lost cause. That is, until we had one over two weeks ago who told us that it was simply a matter of making the chimney a bit wider, something he managed to get done within a week. It only took him about an hour. Hopeful, we put the wood into the fireplace and before we knew it, we had a perfect roaring hearth. We feel stupid about not having the thing fixed earlier. Ward has a penchant for firestarting. Thus far, we\u2019ve spent two Saturday evenings gathered around the fireplace with a rented movie playing in the background. <\/p>\n
The fundraiser<\/h2>\n
By now, we\u2019ve had three meetings. The first one was the most fantastical, the second one was the most practical and by the time the third one rolled around, we\u2019d already put the plans we\u2019d made during the second one into action. The only things we still have to figure out are the Italian delicacies. Tickets are already on sale and we\u2019ve reached out to local newspapers too. We\u2019ve managed to land an interview in one of them and an article in another. We\u2019re hoping to fill the whole theatre, so come one, come all!<\/p>\n
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Changes<\/h2>\n
After I got back from holiday, I made a few changes to my usual routines. When I\u2019m using the lift, my carers know to support my ankle with their foot so I don\u2019t sprain it. It makes using the bathroom a whole lot less stressful, as well as making it easier for me to position myself properly before sitting down on the toilet.
\nI also decided to drop porridge from my breakfast, replacing it with something called \u2018Good Morning\u2019, a nice nutritious fluid breakfast. I eat one glass with a spoon and one-and-a-half glasses of it with my feeding tube. As a result, I don\u2019t cough as much anymore. Besides, I read on a Belgian ALS website that Activia yoghurt doesn\u2019t thicken one\u2019s saliva as much as normal dairy does, so I\u2019ve decided eat that instead of my usual sour cream. <\/p>\n
The last change has nothing to do with my illness, but with my age; I\u2019m having difficulty reading newspapers. These days I only scan the headlines and need to keep my books at an arm\u2019s length before I\u2019m able to read them. I just so happen to hate glasses of any shape or form, so this might be an issue. <\/p>\n","protected":false},"excerpt":{"rendered":"
Faith I\u2019m eating more carefully than ever, but I still manage to choke on my food often, resulting in hours-long coughing fits. It\u2019s especially terrible when I\u2019ve almost gotten the mucus out of my trachea but it gets stuck. I always feel like I\u2019m burning up when that happens. I usually have someone open the … <\/p>\n