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Friday, November 15, 2013

A strange conversation

I've been stewing for a few days now over whether or not to post this but I decided that it may help someone so here it is. (and for the record, I have no ill feelings towards anyone involved and I'm not upset or emotionally scarred or anything.) Monday, the kids were out of school for Veterans' Day. I had several things planned for the day (including dragging the older 3 to the grocery store with me) but then changed plans suddenly when I found out that a friend from my childhood was in town for the day. She invited us to meet up with her and some other friends for lunch, so as soon as Raya's respite provider got here, the other kids and I loaded up and went out for tacos. She and I have been in contact quite a bit in the past couple years as her youngest son has struggled with some mysterious food allergies & GI issues. She has emailed & called me for suggestions & support and she has been a great support to me as well in the past couple of years. She is one of the most well-rounded and interesting people I know and I look up to her for many reasons, so I was excited to see her. (did I mention she lives clear across the country and that before meeting up with her once a summer or two ago, I hadn't seen her since I was in grade school?)

The kids & I got to the lunch place and said a quick hello before going in to order food. They had arrived before we did so they were already eating. After the food came, I got the kids squared away at one table and then sat down with my friend and the couple that had come to see her. Introductions were made and included a brief explanation of how we all knew her. Being that one of our connections was the health issues both of our youngest kids have had, that was one of the things that was brought up. This is where things went a little odd. As I always do when someone asks, I gave a brief summary of Raya's medical history, including being tube fed, having multiple food allergies, and an extremely limited oral intake of a very limited number of foods. More questions were asked and I answered them. My friend and I caught up on each other's kids' dietary issues a bit, and it was mentioned that Raya had been taken off of food completely and had been either solely or primarily on formula for the majority of this year. My friend's friend said, "Did you say she's been on formula for a year?" To which I replied, "No, she's been on formula since she was 2 months old but for the last year she's been on almost nothing BUT formula." Her reply was, "Oh. All those formulas are SO toxic."

Now I have had some interesting conversations in the past 4 years, and by interesting I mean conversations that stretched my ability to listen to someone else's opinion with an open mind without allowing myself to feel like I was being judged and without judging in return, but this was by far the most bizarre, probative, invasive, and judgmental conversation I have had with anyone since Raya was born. Her comment caught me completely off guard. It wasn't just the words she said, but the tone with which she said them. Authoritative, matter-of-fact, I'm right & you're wrong, and probably a few other adjectives that are escaping me right now. I had come to this little restaurant to have lunch with a friend that I've seen once in the past 15-20 years, not to discuss the merits of formula. I knew as soon as she said that all formulas are toxic that this topic was not going to be a positive one, so I shut it down as politely as I could. I paused to figuratively pick my jaw up off the floor and with all the politeness I could muster, I said, "You know what, we're not going to have this conversation because formula is the only thing that has kept my child alive for the last 4 years, so we're just not even going to discuss this."

I am so grateful for my level-headed friend, who was not shocked by her friend's comment and has also had the unfortunate experience of having a child who is older than the typical age at which kids no longer drink formula being dependent almost entirely on formula. She was kind enough to interject with her experience with formula, which gave me a chance to quietly eat my gordita and try to wrap my head around where the conversation had gone. I don't even remember how the entire conversation went from there, but it became very clear immediately that this person had very strong opinions about health and nutrition and absolutely no qualms about sharing them.

Of course everyone has their own opinions and is 100% entitled to their own opinions. The problem was the attitude and tone with which the sharing of her opinions was done. She kept asking me questions about different aspects of Raya's care, like why she's not on any grains right now, whether or not her dysmotility is due to lack of digestive enzymes or poor nutrition caused by the toxic formula I feed her, if I breastfed her (and I did, right up until my breast milk made her sick and we had to switch to that horrid toxic formula that saved her life...), why I don't feed her this or that, and so on. After each question came a statement about her personal philosophy on that subject, and each one was delivered with an air of authority and superiority, which was probably worse in my mind than it actually sounded (maybe...) due to the fact that the things we were talking about were all things that have been major, long-term struggles for us the past 4 years, and have been largely or completely out of my control. I have done the best that I could (and I daresay the best that anybody could have) with what Raya's body has been able to tolerate and with what the medical community (both mainstream and some alternative) has been able to offer her. I have lived every day of the last 4 years trying to manage what nobody has been able to fix, and having a complete stranger suddenly grill me with detailed and personal questions and then follow each of my answers with an opinion that nearly always contradicted what I had said was insulting. (she even criticized my gordita and said that the gorditas at that restaurant are delicious but that I shouldn't have ordered it crispy because they're too hard to chew. really?!?) Just one example, my friend and I had both mentioned that our kids are currently not able to eat any grains because of allergies, and I had also mentioned that Raya has delayed gastric emptying/gastric dysmotility. Her response to that was, "Well, what most people don't understand about grains is that they're difficult for EVERYONE to digest." Ok, so are you saying that we just don't know what we're talking about and we just haven't given grains enough of a chance? That my friend should ignore the blistering eczema and I should ignore the bleeding diaper rash that wheat causes our children because eventually their bodies will figure out how to digest it? I'm sorry but it has nothing to do with the fact that grains are difficult for everyone to digest, it's a matter of their immune systems reacting with miserably painful symptoms when they are exposed to wheat, and whatever other foods they're allergic to.

I've said it a couple times before but I was so caught off guard by what was happening that I probably just babbled like an idiot when I tried to respond to her questions. (questions which I was trying my best not to solicit) I also had no interest in arguing, especially since this person was my friend's friend and I didn't want to disrespect my friend or ruin anybody's visit. Once I realized how the conversation was going to go, I tried to say as little as possible about anything because it was quite clear that she was going to disagree with anything I said. (imagine the horror if I had ever mentioned any of the medications Raya takes. I'm sure they're all horrible and "toxic" too!) I had come to have lunch with my friend and ended up really just wanting to leave about 10 minutes into it, but I was there to see my friend so we stayed until everyone was ready to go. We said our goodbyes and the kids and I left to head to the grocery store with my head still spinning.

My point in sharing this story is not to be negative towards this person. Clearly she has some deeply rooted beliefs and I don't fault her for that one bit. The fact that she is friends with my friend tells me that she is probably a wonderful and interesting person, she just didn't show me the most positive side of herself. My point in sharing this story is so that hopefully, someone will learn from it.

To all of you families of children with medical issues, know that at some point, someone will question the decisions you have made (whether or not they really were choices you had the liberty to make or not, such as our "choice" to put Raya on formula through a feeding tube or let her starve to death). Someone will say things about your child's medical care that will make you feel 2 inches tall, like you are the stupidest person on the planet, like you have irreversibly screwed up your child, like you're overreacting, like you have not done your research as you thought you had, like you've been consulting the wrong people by trusting medical doctors, and make you feel like everything you've ever done for your child was wrong. Even if they've never met you before and know NOTHING about your child other than what they've been told in a 30 second introduction and your child isn't even there. They will judge you unfairly and give you the urge to judge and second-guess yourself. Don't let them. Don't give them that power. Have confidence in the care that you give your child and the decisions that you have made (or that have been made for you out of necessity) and listen to the people who are knowledgeable about what you're dealing with and support you, not the ones that try to tear you down. Assume that people mean well and learn to let unsolicited opinions and advice go in one ear and out the other. Be respectful even when you don't feel that you're being respected. One of the best things that came out of this conversation for me was the realization that although this woman would have made me absolutely livid, hurt my feelings deeply, and had me in tears with the comments she was making if this conversation had happened 2 or 3 years ago, I am OVER IT. I was over it much faster than I thought I'd be, actually. I went to the grocery store, and then went home and told a couple of my closest "medical mama" friends what had happened (who I knew would understand), and then I was over it. For real. I now find it utterly amusing, actually, and I kind of pity her a little because I'm not sure that she realizes how abrasively she comes across. After 4 years of struggling with Raya's health, it was nice to realize that my skin is thick enough to make it through a horrible conversation like this without getting upset, lashing out, becoming overly defensive, punching anybody in the face, or beating myself up after it was over because of all the things I should have said or done differently and I walked away from that situation and honestly did not care what that woman thought. That is a really empowering feeling. I have nothing to prove, and neither does any other medical family.

To anyone who has a friend or relative who is caring for a medically complex child or has a chronic medical issue themselves, or even just meets someone and strikes up a conversation, please don't be like that. Don't be the one that digs at emotional wounds that come with being thrown into the life of caring for a medically complex child. There is nothing wrong with asking questions, but be mindful of the way you do it. Ask questions in the spirit of learning about that person's child and becoming more educated about whatever condition they have, not so that you can criticize or question whatever decisions they've made. The reality is that no matter how much you think you know, you do not know the details of their child's medical history the way that they do or what has gone into every decision they've made the way that they do. You have not sat in those hundreds of doctor and therapy appointments. You have not felt your heart leap into your throat when they see the nurse's phone number pop up on their caller ID. You have not felt the pain of the helplessness that comes with seeing their child stuck in a hospital bed day after day, wondering if you'd make it home in time to spend the next holiday with your whole family instead of being on isolation at the hospital. You have not pinned their child down for countless IVs, blood draws, shots, feeding tube insertions, dressing changes, x-rays, tests, or any of the other things they've done to their child. You have not had the heavy burden of deciding whether or not to try a medication that MIGHT help alleviate the miserable symptoms that keep them and their child awake at night, despite the possible side effects it could have. You have not been forced to learn how to perform medical procedures on their child like they have. You haven't flown across the country with their child so he or she could have specialized medical testing done. You have not had the difficult conversations they've had, been given the heartbreaking or frustrating news they've been given, or been faced with the impossibly difficult decisions they've had to make. The bottom line is that they don't owe you an explanation so don't try to make them feel like they do, and don't try to make them feel bad or wrong or guilty if the care of their child does not align with your personal philosophies. Unless they are specifically asking for your input, what you think really does not matter, so just do them a favor and be a good listener. If you have a burning desire to share something that you know that you believe may be beneficial, ask them if they are interested in hearing about it and respect their feelings if they tell you no.

1 comment:

  1. i get that ALL the time, even from other tubie moms that use a blended diet, vs formula. i also get crap because my kid is on a ton of sleep medications, and i wont get a cochlear implant, blah blah blah blah.

    ReplyDelete

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