Return to caring, not "fixing"
I have been thinking about this post for a while now. Many of you know that we use a "blended diet" for Little B. Long story short, Little B's brain tumor sits on the part of the brain that controls vomiting and nausea, and made him not want to eat. Enter a feeding tube. Unfortunately, the formula made him vomit and constipated him (note the tumor was also causing vomiting). We dealt with a *lot* of vomit.
For a long time, we were just so concerned about keeping Little B alive. I mean, I wanted him to thrive. I wanted him to learn his letters, but most of all, he needed to stay alive. For a long time, we thought that if we just found the right diagnosis, or the right medicine, or fed him at just the right time, we could *fix* Little B. We could manage the problems so that he would be OK. And at some point, it was hard to think about Little B as a person, because we were so worried about all of his problems. We just needed to *fix* the issue and life would resume.
Add to that, the nightmare we had with feeding. There is something profoundly disrupting when one has a child on a feeding tube. Everyone looks at you just a little bit differently -- I mean everyone says it, "children will eat if they are hungry; they won't starve themselves." So it must have been my fault, right? The kid wouldn't eat. He wouldn't eat to such an extent that he would die. Actually die. So, a feeding tube. And then they give you formula (not food, a chemical concoction), which smells like death and you make using scales and feed using syringes. To me, at least, it just felt like my child was the unwilling subject of a poorly researched chemistry experiment gone vastly wrong. I felt as though I was no longer qualified to care for my child. A dietitian told me how much to feed Little B, and when. Unfortunately, none of it actually helped. Perhaps it would have been different if it actually helped.
In any case, we made the leap to blended diet. And it worked. And he stopped vomiting largely (we started chemotherapy a month after we started blended diet, so the vomit came back a bit). But his energy improved. His color improved. He became vigorous. It wasn't instantaneous, but it was amazing. The odd thing is that I also feel like a parent again. Once again I feel as though I could nourish him. If he's under the weather, his blend is different. If we have a busy day, I can pop in a few more calories. I've read books on nutrition support during cancer treatments, and modified the blends to fit some of the recommendations given. (Let's be honest, here. He is on chemotherapy. It's likely done a world of good. I can't control the chemo. It is so far beyond what I have to offer, it's not in the same league. That being said, adding turmeric to his blends is something that I *can* do (without him arguing about it!), and it might be helping.)
I guess what I'm saying is that blended diet allows me to care for my child in way that makes me feel like a parent again. It has given me a bit more confidence in articulating what my child needs. Regardless of the benefits to me, blended diet has turned my child around from a health perspective.
All hail the blender.
For a long time, we were just so concerned about keeping Little B alive. I mean, I wanted him to thrive. I wanted him to learn his letters, but most of all, he needed to stay alive. For a long time, we thought that if we just found the right diagnosis, or the right medicine, or fed him at just the right time, we could *fix* Little B. We could manage the problems so that he would be OK. And at some point, it was hard to think about Little B as a person, because we were so worried about all of his problems. We just needed to *fix* the issue and life would resume.
Add to that, the nightmare we had with feeding. There is something profoundly disrupting when one has a child on a feeding tube. Everyone looks at you just a little bit differently -- I mean everyone says it, "children will eat if they are hungry; they won't starve themselves." So it must have been my fault, right? The kid wouldn't eat. He wouldn't eat to such an extent that he would die. Actually die. So, a feeding tube. And then they give you formula (not food, a chemical concoction), which smells like death and you make using scales and feed using syringes. To me, at least, it just felt like my child was the unwilling subject of a poorly researched chemistry experiment gone vastly wrong. I felt as though I was no longer qualified to care for my child. A dietitian told me how much to feed Little B, and when. Unfortunately, none of it actually helped. Perhaps it would have been different if it actually helped.
In any case, we made the leap to blended diet. And it worked. And he stopped vomiting largely (we started chemotherapy a month after we started blended diet, so the vomit came back a bit). But his energy improved. His color improved. He became vigorous. It wasn't instantaneous, but it was amazing. The odd thing is that I also feel like a parent again. Once again I feel as though I could nourish him. If he's under the weather, his blend is different. If we have a busy day, I can pop in a few more calories. I've read books on nutrition support during cancer treatments, and modified the blends to fit some of the recommendations given. (Let's be honest, here. He is on chemotherapy. It's likely done a world of good. I can't control the chemo. It is so far beyond what I have to offer, it's not in the same league. That being said, adding turmeric to his blends is something that I *can* do (without him arguing about it!), and it might be helping.)
I guess what I'm saying is that blended diet allows me to care for my child in way that makes me feel like a parent again. It has given me a bit more confidence in articulating what my child needs. Regardless of the benefits to me, blended diet has turned my child around from a health perspective.
All hail the blender.
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