Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Wednesday, August 4, 2010

24~7 Means 24~7

Well, at least the challenge of baking for the farm market was no longer an issue. In the face of all that was happening, it just went by the wayside. I didn't leave them in the lurch; they'd already started buying from someone else before I had to quit. We would miss the bit of income, but this was getting to be an ongoing theme in our lives. 24~7 meant 24~7.

The emergency with her Nanna had been hard on Bud. She'd been very scared and had to go through some of it alone when I had to be with Mom. She and my mom were like two peas in a pod; they were very important to each other. Butterfly readily agreed to move in at Nanna's so we could look after her. And as Hubby had said years before, as long as she was with her family, home was wherever we were. I encouraged a one-day-at-a-time, but let's get comfortable kind of approach to the situation. So Butterfly busied herself creating her own space in Mom's sun room, hanging up her rock star posters, etc. Butterfly's distractability was frustrating when trying to get her to focus on a school subject, but it was also a positive in some situations, like a defence mechanism that carried her away from the stresses of life. It allowed us all to step back and take a little breather.

Both she and dog were very familiar with Mom's house. Before Mom's heart attack, the dog would routinely tease Mom by stealing one of her slippers when we came in from shopping. We would all chase him around the house to get the slipper back. It was fun. But now the dog didn't bother with Mom's slippers at all, even though they were tucked under her bed like always. Instead he went into her room, put one paw gingerly on the edge of her bed and looked at her, sniffing the air, as if to satisfy himself that she was ok. He checked on her this way at least once a day.

The cats ~ now they were a different story. They were just scandalized by being brought to a different house, one with a solid door instead of a glass sliding door that they could watch the birds through. They just didn't understand what this was. But at least they soon established their favourite hiding places and could usually be found in one or another of them. They were asked to stay out of Mom's room which, for the most part, they respected, except that Pepper took to sleeping in Mom's closet sometimes. But they didn't bother Mom. No, it wasn't magic. I just took them to the doorway and told them "no." And like any animal, they instinctively know where they aren't wanted. A dog will try to change the situation, but a cat will usually just skulk away. They have better things to do anyway, thank you very much... like sleeping for instance. I wasn't sure how Mom was going to take to all these critters in her home, but oh well. We are family.

When Mom first got tucked into her hospital bed, she smiled and said that it felt like a cloud of feathers. She was glad to be home. We were to have a community nurse come in regularly to check on her and help us acclimatize to the situation. The first visit was eventful. The nurse took Mom's vital signs and chatted with her. Then she came out to the dining room to write her notes. It was early and Mom hadn't had her breakfast. I had made her a tray and took it in when the nurse came out. Then I came back for her juice and gave it to Butterfly to take in while I spoke with the nurse. Suddenly Butterfly yelled, "Mom! Something's wrong with Nanna!!" Deja vu. I dashed into her room, but I could hear the nurse right on my heels, so I simply grabbed the food tray out of the way and yielded to her. Mom's eyes were open but unresponsive and her teeth were clenched tight, so the nurse was unable to give her a shot of nitro. Deja vu again. The nurse said to call 911, so off I went. When I got back, she was calling Mom's name and slapping her lightly on the cheek. Suddenly Mom snapped out of it. She was very annoyed to hear I'd called 911, but hey... the nurse says call, I call.

Meanwhile, Butterfly was in the living room pacing, crying, and saying out loud over and over, "I don't want Nanna to die, I don't want...." I comforted her and told her Nanna had snapped out of it and was ticked off at having to go back to the hospital, so I was pretty sure she was going to be ok. Indeed, we followed the ambulance back to the hospital and a couple of hours later brought Mom home again, wrapped in a hospital blanket. They hadn't been able to find a reason for what happened, except that maybe it was an odd, scary fainting spell. Back to bed she went, and a new meal prepared for her. It was beyond unfortunate that it was Butterfly who'd discovered Mom both times she'd been in trouble, but I acknowledged this and talked about it with Bud to help her keep a perspective. For a few days she was scared to go into her Nanna's room alone, but as time went on, she got over it.

We settled into a routine of meals, meds, and looking for things for Mom so that, as well as reading, she could keep busy writing notes or doing some crafts. It was on-the-job learning how to manage her diet (unmedicated Type 2 diabetes), her meds, check her blood sugar and blood pressure regularly, and the nurses taught me how to dress her wounds ~ a couple of pesky sores on one ankle and foot that all the time in bed wasn't helping. I'd coax her to get up whenever I could, and sometimes she sat at the dining room table to write her note cards, and though she had a TV in her room for her favourite programs, I sometimes got her to sit in the living room to watch a special program or just to have her afternoon tea.

As summer turned into fall I'd been looking for schooling resources for Butterfly. I'd had a chat on the phone with her psychologist who thought the move must have been very hard on Bud, but with everything else, I didn't really think so. In fact, Butterfly made some friends just down the road which was kind of fun for her, so except when she was in reaction, she was fairly content. When she got into something she shouldn't have had, which happened from time to time since we had different products in the house for different people, then she would whine and cry that she wanted to go home. But a check of her eyes told us this was temporary. Her reactions didn't last as long as they used to. Somehow because she was bigger, her body metabolized the toxins differently... at least more quickly. But at the same time, her reactions were louder and more violent. That's when I was glad of that boundary established with the police. It was a threat I didn't like to use, but there was also an elderly woman we cared about at the other end of the hallway, so hey...

Butterfly in a happy moment at her Nanna's

What was good for the Nanna was also good for Butterfly, so keeping her busy was important too. The psychologist had given me the URL for a site where I could get sample GED tests, so I printed those up and gave them to Bud regularly. We also got her a Nintendo DS with math problems on it she was to do daily for exercise, and I gave her other assignments as well. It wasn't an ideal situation, but I was pretty busy and thought she was old enough to start showing some independence in her studies anyway. I gave her writing assignments to do, and when she asked me a question I couldn't answer, I'd ask her to research it on the internet and write me a report about it. She never did. Not one report did she hand me. And when the writing assignment was creative, she'd come up with a great, complex plot she'd tell me all about. But when she tried to put it on paper, it would be like, "Bill went to pick up Betty and they went out. The end."

Over time it became clear that Butterfly has an extremely vivid and creative imagination ~ the makings of a great story teller. But if she ever goes that way, she's going to need a good secretary, because the technical writing skills just aren't there and nothing I ever tried helped. What with everything, we'd cut some other studies short. We never finished our "visit" to India or Japan, and the information I'd gathered up on the "Stans" (all those countries whose names end in "stan") went by the wayside. But at the same time, I felt the things happening in our lives were valuable learning experiences, and the sample GED tests were at least giving her an idea of what she needed to prepare for.

Meanwhile, Mom didn't like being an invalid. She thanked me every single day ~ for supper, or that wee dram of brandy at 5, for tuning in her TV, or just in general, before turning in. But she had hoped things wouldn't happen this way. Thing is, we had to cope with what we had. That heart condition that caused the heart attack in the first place was still there and wasn't going to go away. So, at 86, she just wasn't going to get past this and get back to the way she was before. And so we settled in for the winter.


  1. We haven't had to face anything like this with Goose and her grandparents just yet, but I know it's coming. Poor Butterfly! to be the one to find her both times.

  2. I know. If we could write the script for our lives, it would always be a little different, eh? Alas, we don't get to. :/

    And now the post that was really, very difficult to write. Better get to it.