What Not to Say..
I've been thinking about the life we are living, and there are a few things that impact daily lives beyond what you might imagine. Chronic illness and constant stress from it is hard to live with, but it is also hard to watch. Sometimes people who believe they are helpful wish to contribute unsolicited opinions. The devil's advocate in me believes they probably mean well, but the mama bear in me sometimes goes on the offensive.
A little preface here. My husband is a genius. Literally. And while I'm not a genius, I am very well educated. I'm also fairly OCD. I pour over major life decisions. I research thoroughly. I talk to my circle of health-oriented friends. My husband and I discuss our parenting decisions together and we often include our sons in many of these discussions. While we ask their input, we are in charge of raising them and our viewpoint weighs more. Luckily, though, they typically agree with what we are thinking as adults.
Today's blog is a little list of what *not* to say to someone with chronically sick kids. I don't intend this as a rant, but more in hopes that others learn how to best support families who are going through what we are.
Common Food/Nutrition Suggestions
1) Maybe you should let them eat X, Y or Z. Other kids do and they're fine. Food sensitivities aren't a choice. It's a body's response to foods that it simply cannot tolerate. Sometimes reactions are immediate, like when my kids take too much vitamin C, they get a histamine reaction that includes facial flushing, extreme itchiness and discomfort. Sometimes reactions are subtle, and we cannot feel how they effect us, but we have a slow gradual decline, as is what happens to Patrick when he thinks he can eat gluten. Hotel waffles at hockey tournaments caused his last decline in the form of migraines from anemia due to malabsorption of food, as can happen when a gut is weakened by gluten when a person is autoimmune. Do you think anyone would want to cook with the restrictions my kids have? I used to be a fabulous baker. But without eggs, gluten, dairy, or corn, it's very challenging. Pancake are my nemesis. I can't get the texture right. I can't get them to stay together. Last time I made 'em, I had to call them "deconstructed pancakes." I gave up mid-batch. Don't remind me of my struggles to provide "normal" food to kids who can't eat "normally." I'm already frustrated. I can buy 1-2 pre-made meats for dinner that they tolerate (Buono Italian beef, and some cleaner sausages), snacks are hard because currently John isn't enjoying dried fruit or jerky, and he can't eat grains or nuts or seeds. Everyday I hear the complaints over a lack of traditional breakfast foods. Again, would you like to live this way, and then be reminded about it?
2) They look so skinny. Maybe they should eat more! Maybe you should feed them X, Y, Z... My sons are encouraged to eat as much as they want to. I never tell them to stop eating. I never withhold food. Growing boys need all the energy they can get, provided it's from food sources their bodies tolerate. Sometimes the Lyme can suppress their appetite. I have tried making them eat more when they feel this way, and it ends in vomit. They are both teenagers and know when to eat. Would you want someone pointing out anything about how you look in the weight department?
3) Why do they have to take so many supplements? Ah. Yeah, like we *wish* for this. Doctors say that my kids aren't getting all their nutrients from their food to support their bodies. No one wishes to drop money on supplements. It's a necessary evil though. We are doing what the Lyme doctors recommend.
Common Lifestyle Suggestions
1) Have you considered sending them to "regular" school? Patrick has neurotransmitter issues we are trying to correct. He was falling asleep at 5:30 am despite an 11pm bedtime. He wakes up at 11am. Currently he's closer to 1:30 am sleep time, but last night it was 4am. John cannot wake up easily. With his last Lyme LDI dose, he slept until 2:30pm and was still tired. Should I force them awake (assuming I could) at 6:30am so they could go to traditional school, ignoring the fact that their bodies need this time to fight their battles? In the age of bullying, would it be wise to make John go to school with his face swollen and red from the Lyme LDI? We homeschooled by choice initially, but now it's by necessity. Do I wish my kids felt well enough to go to school? Heck yeah! Would I put them in regular school if they were? Don't know. Frankly, it's no one's business but my immediate family, which is why I don't ask for anyone's opinion. This isn't a question I handle very well, admittedly. Would you like to hear my opinions on public schools? Probably not. You don't ask me, and I don't tell you, because it's not my business.
2) But they don't have any time to socialize. Time isn't the issue. It's health. They don't have the health and energy to socialize. We do have our co-op, and God willing, hopefully we are well enough to participate in hockey in the fall. I continually encourage my kids to invite friends over. Sometimes they do, and sometimes they don't feel well enough to. Please don't remind us that our social lives are less than ideal. We know. We get it. We don't need to be reminded that we are lonely or that being sick is isolating.
3) How will they learn to be around girls? They are around me all day. I'm female! Don't I count? I get that it's not the same. I am doing my best to develop them into caring men who know how to take care of others. But seriously, right now, I'm worried about whether they will ever be well. With Lyme as an STD, I'm not even sure I'll be a grandma with healthy grandkids. This is a ridiculous thing to say. Do you know kids at public school can be awkward with the opposite gender? I didn't even know much when I started dating. I'd like to think I turned out ok. I've seen all kinds of people with all kinds of life-mates. Haven't you ever noticed that there is someone for everyone? Someone might not be your cup of tea, and that's ok, because they found someone who loves them as they are. If it's right, my sons will find someone perfect for them, regardless of their current social life. And for Pete's sake, they are 13 and 14. They have plenty of time to find girls and make questionable decisions if they want to. And maybe someone is thinking : What if they don't even like girls? Not that there's anything wrong with that! I just want them healthy enough to find out what they want in life, regardless of what it is. Besides, I'm pretty sure their hearts belong to their dogs right now :-D And, for the record, there are girls are our co-op.
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Those are the things that have been said to me that bother me the most. But now that you know what bothers me, what can you say that would help?? Here's some things that have been said to me that I've loved.
1) Would you like to go for a walk? Yep. Being out of my environment helps me immensely.
2) Do you want to meet for tea? Absolutely. Love to have adult time.
3) I know a place that has supplements on sale. Let me tell you about it.. Woohoo!
4) I just made a recipe that fits your family's needs. It was so good. I'll send it to you! Thank you! We love trying new foods we can actually tolerate.
5) Your family has been on my mind, and I pray for you often. I hope you're getting well. We take all the prayers we can get.
6) I know the kids don't have a lot of energy. My kid discovered this video game that yours might enjoy. Maybe they could play together sometime? Video games are one of the things my kids do that is normal. They'd love to connect with your family.
A little preface here. My husband is a genius. Literally. And while I'm not a genius, I am very well educated. I'm also fairly OCD. I pour over major life decisions. I research thoroughly. I talk to my circle of health-oriented friends. My husband and I discuss our parenting decisions together and we often include our sons in many of these discussions. While we ask their input, we are in charge of raising them and our viewpoint weighs more. Luckily, though, they typically agree with what we are thinking as adults.
Today's blog is a little list of what *not* to say to someone with chronically sick kids. I don't intend this as a rant, but more in hopes that others learn how to best support families who are going through what we are.
Common Food/Nutrition Suggestions
1) Maybe you should let them eat X, Y or Z. Other kids do and they're fine. Food sensitivities aren't a choice. It's a body's response to foods that it simply cannot tolerate. Sometimes reactions are immediate, like when my kids take too much vitamin C, they get a histamine reaction that includes facial flushing, extreme itchiness and discomfort. Sometimes reactions are subtle, and we cannot feel how they effect us, but we have a slow gradual decline, as is what happens to Patrick when he thinks he can eat gluten. Hotel waffles at hockey tournaments caused his last decline in the form of migraines from anemia due to malabsorption of food, as can happen when a gut is weakened by gluten when a person is autoimmune. Do you think anyone would want to cook with the restrictions my kids have? I used to be a fabulous baker. But without eggs, gluten, dairy, or corn, it's very challenging. Pancake are my nemesis. I can't get the texture right. I can't get them to stay together. Last time I made 'em, I had to call them "deconstructed pancakes." I gave up mid-batch. Don't remind me of my struggles to provide "normal" food to kids who can't eat "normally." I'm already frustrated. I can buy 1-2 pre-made meats for dinner that they tolerate (Buono Italian beef, and some cleaner sausages), snacks are hard because currently John isn't enjoying dried fruit or jerky, and he can't eat grains or nuts or seeds. Everyday I hear the complaints over a lack of traditional breakfast foods. Again, would you like to live this way, and then be reminded about it?
2) They look so skinny. Maybe they should eat more! Maybe you should feed them X, Y, Z... My sons are encouraged to eat as much as they want to. I never tell them to stop eating. I never withhold food. Growing boys need all the energy they can get, provided it's from food sources their bodies tolerate. Sometimes the Lyme can suppress their appetite. I have tried making them eat more when they feel this way, and it ends in vomit. They are both teenagers and know when to eat. Would you want someone pointing out anything about how you look in the weight department?
3) Why do they have to take so many supplements? Ah. Yeah, like we *wish* for this. Doctors say that my kids aren't getting all their nutrients from their food to support their bodies. No one wishes to drop money on supplements. It's a necessary evil though. We are doing what the Lyme doctors recommend.
Common Lifestyle Suggestions
1) Have you considered sending them to "regular" school? Patrick has neurotransmitter issues we are trying to correct. He was falling asleep at 5:30 am despite an 11pm bedtime. He wakes up at 11am. Currently he's closer to 1:30 am sleep time, but last night it was 4am. John cannot wake up easily. With his last Lyme LDI dose, he slept until 2:30pm and was still tired. Should I force them awake (assuming I could) at 6:30am so they could go to traditional school, ignoring the fact that their bodies need this time to fight their battles? In the age of bullying, would it be wise to make John go to school with his face swollen and red from the Lyme LDI? We homeschooled by choice initially, but now it's by necessity. Do I wish my kids felt well enough to go to school? Heck yeah! Would I put them in regular school if they were? Don't know. Frankly, it's no one's business but my immediate family, which is why I don't ask for anyone's opinion. This isn't a question I handle very well, admittedly. Would you like to hear my opinions on public schools? Probably not. You don't ask me, and I don't tell you, because it's not my business.
2) But they don't have any time to socialize. Time isn't the issue. It's health. They don't have the health and energy to socialize. We do have our co-op, and God willing, hopefully we are well enough to participate in hockey in the fall. I continually encourage my kids to invite friends over. Sometimes they do, and sometimes they don't feel well enough to. Please don't remind us that our social lives are less than ideal. We know. We get it. We don't need to be reminded that we are lonely or that being sick is isolating.
3) How will they learn to be around girls? They are around me all day. I'm female! Don't I count? I get that it's not the same. I am doing my best to develop them into caring men who know how to take care of others. But seriously, right now, I'm worried about whether they will ever be well. With Lyme as an STD, I'm not even sure I'll be a grandma with healthy grandkids. This is a ridiculous thing to say. Do you know kids at public school can be awkward with the opposite gender? I didn't even know much when I started dating. I'd like to think I turned out ok. I've seen all kinds of people with all kinds of life-mates. Haven't you ever noticed that there is someone for everyone? Someone might not be your cup of tea, and that's ok, because they found someone who loves them as they are. If it's right, my sons will find someone perfect for them, regardless of their current social life. And for Pete's sake, they are 13 and 14. They have plenty of time to find girls and make questionable decisions if they want to. And maybe someone is thinking : What if they don't even like girls? Not that there's anything wrong with that! I just want them healthy enough to find out what they want in life, regardless of what it is. Besides, I'm pretty sure their hearts belong to their dogs right now :-D And, for the record, there are girls are our co-op.
--------------------------------------------------------------------------------------------------------------------------
Those are the things that have been said to me that bother me the most. But now that you know what bothers me, what can you say that would help?? Here's some things that have been said to me that I've loved.
1) Would you like to go for a walk? Yep. Being out of my environment helps me immensely.
2) Do you want to meet for tea? Absolutely. Love to have adult time.
3) I know a place that has supplements on sale. Let me tell you about it.. Woohoo!
4) I just made a recipe that fits your family's needs. It was so good. I'll send it to you! Thank you! We love trying new foods we can actually tolerate.
5) Your family has been on my mind, and I pray for you often. I hope you're getting well. We take all the prayers we can get.
6) I know the kids don't have a lot of energy. My kid discovered this video game that yours might enjoy. Maybe they could play together sometime? Video games are one of the things my kids do that is normal. They'd love to connect with your family.
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