Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Friday, July 2, 2010
A word on Empathy....
I have learned a lot while traveling down this path -- about myself, my inner strength (and weaknesses), about the love and support of family, the strength of prayer (from everywhere), the unfaltering support of friends, and the power of empathatic words.....
I came across this article on a webpage about reflux babies and feel it was well written. It is written by a social worker: “Where to start, what to say and how to respond when talking with loved ones about Infant Reflux” by Mary Kaufman, LCSW September 2006 (Adapted, and paraphrasing in my own words addressing little ones with multiple food intolerances)
It is human nature to want to make people feel better when they are distressed, typically our first response is to tell them that “everything will be okay”. Perhaps you’ve been the person who’s said this to someone and you’ve felt it was appropriate. However, perhaps you’ve also been on the receiving end of this comment and you felt insulted, confused or dismissed. Why is it that the things we think will help the most often put more distance between us and the person we’re trying to console?
This writing will suggest some alternate ways to show our concern, along with ways to deal with unhelpful comments (when you’re the one who needs empathy).
1. “Well, at least s/he’ll grow out of it”.
** If you’ve ever said this to someone, think about it this way: You probably know what it’s like to have a stomach ache/cramps, nausea, gas, diarrhea or heartburn, a stomach bug or food poisoning. It’s distressing and you probably reach for the nearest medication and swear to yourself that you’ll never eat whatever food you think caused it again. Now, imagine that you’re a baby and that the distress lasts day in and day out. Now, imagine being the parent of that baby—who listens to screaming day and night, who doesn’t have anything to stop the distress, who doesn’t have an article of clothing or a piece of furniture that hasn’t been spattered with vomit, who stays up half the night trying to console a screaming baby, who attends countless appointments with specialists, maintains a rigorous schedule and keeps a detailed log of feeding intake, BMs, etc. As that parent, when you hear “S/he’ll outgrow it”, you’re hearing that this is just some phase that your child will outgrow. You’re NOT hearing empathy for just how hard things are NOW. Sure, we can all look to the future and imagine how different things might be; however, in the present reality, things are pretty tough and it would be nice to have that acknowledged.
**If you’ve ever said this to someone, a better choice might be, “I’ve heard that kids can outgrow this, but it must be miserable when they’re going through this.” Or “Does your doctor have any idea what’s causing this or if there’s any way to make him/her more comfortable?”
**If someone says this to you: An easy comeback is to say, “Yes, and that will be great. However, right now, it’s pretty difficult to deal with.”
2. “But s/he looks healthy to me”. Unfortunately, many people with terrible illnesses also look healthy. We would never question a cancer patient’s diagnosis because s/he “looks so good”. While food intolerances is not the same as cancer, very serious damage can be done to the GI tract if left untreated—no matter how healthy or happy a baby looks.
**If you’ve ever said this to someone: You might consider saying something like, “You must be working very hard to keep him/her so healthy despite all of his/her issues” or “What a beautiful baby—I am so sorry s/he is suffering like this”.
**If someone has said this to you: A good comeback is to say, “S/he really is gorgeous; however, the intolerances are really causing damage to his/her GI tract and ability to eat”.
3. “My baby/toddler was a picky eater, too” or “S/he’ll eat when s/he wants to”.
Unfortunately, many babies will develop oral/food aversions because it is so painful to eat and digest. The difference between picky eating and food aversions is that picky eaters simply don’t eat foods they don’t like; however, they will happily snack on things they like (Chocolate cake, cookies, milk, etc.). A child with a food aversion will literally half starve him/herself to avoid the pain of eating. Children will go days without taking formula or food and often end up losing weight and/or being admitted to the hospital for dehydration.
**If you’ve ever said this to someone: You might consider saying something like, “I can’t imagine being in so much pain that I wouldn’t want to eat. This must be so hard to watch.” Or “I never knew a baby would do this—what is your doctor doing to help?” This lets a parent know that, even though you might not fully understand WHY, you are still being empathetic. It also acknowledges that there is a problem and doesn’t make the parent feel as if they have to defend the diagnosis.
**If someone has said this to you: A good response is to say, “S/he is being followed by a _________specialist who has confirmed that this is a very serious issue. It’s different from just being picky—it’s called an aversion and many children with multiple food intolerances develop this”.
4. “…Sounds like a made-up diagnosis” or “Babies didn’t have this in my day”. Just like other diseases (cancer, etc.), medical science is much more sophisticated at being able to diagnose problems that might have been missed in past generations. When the parent hears this, it can further make them feel alienated or might make them feel as if their baby’s problems are “all in their head”. Parents need reassurance when their child is sick, even if people don’t truly understand what’s going on. When a parent hears this type of statement, it really sounds as if the speaker is telling him/her that they don’t believe the diagnosis exists or is accurate. This can quickly put a person on the defensive.
**If you’ve ever said this to someone, you might consider saying something like, “Wow, it’s amazing that doctors are able to diagnose things like this now” or “I’ve honestly never heard of this before—tell me more about it.”
**If someone has said this to you, a good response might be to say, “It’s a blessing that medical science is now able to pinpoint what’s going on. Otherwise, we wouldn’t know why s/he’s suffering.” Or “It’s always existed; however, doctors didn’t know what was happening and often mislabeled this type of problem as ‘colic’. I’m so glad they’re able to diagnose these things now so that we can help our baby.”
Points to remember: As stated before, it is human nature to want to make those around us feel better when they’re hurting. The problem is that we don’t often quite know how.
Here are a few things to remember when talking to these parents:
1. Minimizing the problem won’t help anyone. Instead of trying to make people “look on the bright side” or making statements like “This will all blow over soon”, try simply saying something like, “This must be so hard for you”. Sometimes there’s nothing more comforting to someone in need than hearing that another person empathizes with their suffering. Making light of someone else’s misery just puts them on the defensive and makes them feel more isolated.
2. Don’t be afraid to ask questions, and ask BEFORE doing research for a parent. Most parents welcome questions and don’t mind explaining their child’s diagnosis and treatment plan. Since children can present with different symptoms, suffer from different complications and often receive different treatments, it’s much better to talk to the parent(s) to find out what’s going on than to research on your own and come back with advice/information that might not be helpful.
3. Even if you were a perfect parent, try to refrain from assuming that you can make a child eat/cure his reflux/get him to sleep through the night. It is so frustrating and depressing to have a baby who doesn’t do any of the things that other “normal” babies do. Parents of kids with multiple food intolerances will deal with gallons of puke, tons of laundry, babies who awaken all through the night for months longer than “normal” babies, babies and toddlers who would rather starve than eat, etc. it’s easy for a sleep-deprived parent to start to blame him/herself for the baby’s issues and hearing comments from a friend or loved one that insinuate the child would do much better under their care can be devastating for a parent. It’s hard not to want to jump in and take over, usually out of an intense desire to help. If you truly want to be helpful; acknowledge what they are going through and then offer your services to the parent(s)—ask if mom wants you to throw in a load of laundry, cook dinner or clean the bathrooms for her. See if mom or dad would like to take a nap while you watch the baby for awhile (just remember to follow their guidelines for eating/sleeping!). These things are so helpful to an overwhelmed parent and your willingness to empathize and pitch in will not go unnoticed!