Frustrated by what people say sometimes

[Anonymous]

HUGS Denise!

[Anonymous]

Oh my goodness! How I feel for you!I think we have all had similar experiences. It’s awful, and unfair and depressing.

Here’s the unfortunate thing with infant reflux…so many people think we-reflux moms-are making it all up. Either because they’ve never heard of it (likely the older generation), or have heard of it so much that they think it must be some “new” diagnosis that is simply a way to make us “crazy moms” feel better. Of course, they are not the ones at home cleaning up the vomit, hearing the awful, painful cries and pacing through agonizing feedings.

I’ve heard it all…”It’s just colic”…”Perhaps you are over-reacting”…”Are you going to a good ped. b/c that is SOOO over-diagnosed”…blah, blah, blah…

There was a time where I convinced myself it was all in my head. I cried for hours believing I had given my baby medication he didn’t need selfishly to stop something that didn’t exist. I thought I was paranoid. I thought I was a victim of severe anxiety. Even my husband–honestly a fabulous father and usually incredibly kind husband–at one point told me to stop chatting with all of you b/c you were as “freaked” as I was, and that we were all “verging on going crazy”. That was an extremely low point right after my mother-in-law had whispered how I was “making Sander sick when he wasn’t”.

I have had so much pain over all of it, that I honestly sometimes can’t sleep thinking about ever having another child. I know I want more. I know I will have more. But I am so afraid of this all happening again, that I shake when I look towards the future.

But here’s the truth…you are a good, loving, kind mom. If you weren’t, you wouldn’t be on here trying to find ways to help your child. You are not crazy. You are not doing anything wrong. You are not spoiling. You are searching. You are grasping. You are taking every step with more grace and strength than that b**** in church will ever know.

Don’t give up. Don’t waste a tear on such ignorance. Instead, be proud of your devotion to your child. And be assured that the days will come where that little one will be ok. You are doing everything you can in the meantime.

[Anonymous]

[Anonymous]

sandermom wrote:

There was a time where I convinced myself it was all in my head. I cried for hours believing I had given my baby medication he didn’t need selfishly to stop something that didn’t exist. I thought I was paranoid. I thought I was a victim of severe anxiety. Even my husband–honestly a fabulous father and usually incredibly kind husband–at one point told me to stop chatting with all of you b/c you were as “freaked” as I was, and that we were all “verging on going crazy”. That was an extremely low point right after my mother-in-law had whispered how I was “making Sander sick when he wasn’t”.

I went through that too! People really make you just feel insane sometimes when really they are the crazy ones who think they know better and it is just colic

[Anonymous]

Bravo Sander’s mom!

I went through that too, thinking I was making it up and giving her something she doesn’t have. Especially when people would say “they called that collic in my day” or something of the sort, insinuating that they put up with it, why can’t we. But we shouldn’t feel badly for not wanting our children to suffer just because so many people are ignorant about GERD and the allergies.

[Anonymous]

Here is my favorite response…

“I appreciate your opinion only due to the fact that I can only assume you don’t any better”.

[Anonymous]

I think we all have been in this boat. People just don’t get it. I hear all the time. Oh you mean he has colic. He will outgrow that in no time. I also am told I spoil my kids. At this point I get sent articals on spoiling children and kids shirts that say I’m spoiled. I wish I could say I don’t care, but I do. All I know to say is what the other woman have said. They don’t know unless they have been there. My husbands family and well mine for that matter also thought I was crazy with my first. That is until they saw it. I remember my mom coming to watch Luke once and when I got back she said,” oh he is in pain”. YOU THINK! That is what I had been telling her. UGH!!!!!! I really wish someone like Oprah would do a story on infant refulx so more people would understand and also other moms wouldn’t feel so alone.

[Anonymous]

Shelby- Articles and shirts?! that is really mean…I am so sorry that people are so horrible sometimes

[Anonymous]

You know what’s even worse than the mean and ignorant comments, is the very real possibilty that one day a mommy is going to suspected of child abuse because of this lousy disease. Did any of you hear about the mom who was arrested for giving her baby formula through a feeding tube in a hospital? She was arrested for child abuse and the so called experts say she has Munchaesen by Proxy. The nurses reported her to social workers because she was weighing the baby continually and she gave her formula (through the tube) without their permission. The baby’s medical records indicate she was once diagnosed with acid reflux. I don’t know much more about the case, but isn’t that scary? What if this poor woman was just frantic about her baby’s weight and was just trying to give her some calories through her tube?

[Anonymous]

What? That story sounds ridiculous! Aren’t you allowed to fee your baby what you want?

Shelby- I’ve emailed Oprah several times our story about Hailey. I heard a while back that she was doing a show on reflux, and got bombarded with parents of kids with infant reflux posting in so she took it off the site.

There certainly needs to be an awareness that’s spread.

[hellbennt]

a while back we all bombarded oprah…*sigh*

[Anonymous]

Oh, how I agree! SOMEONE needs to do a story! It’s hard enough worrying that they are developing correctly…add to that the concern over their eating, and it is all so overwhelming! My husband’s family is all quite tall (he’s 6’4″, his father is 6’7″). My son is only in the 40th% for height and only 20th for weight. They don’t mean to be mean, but they comment on it sometimes. I don’t know whether it’s because he doesn’t eat too much b/c of reflux, or not. But all that adds to the guilt, too.

And on top of that, all the questions and conerns, and thinking I wa crazy (and being told I was crazy) has made me doubt my mothering skills in nearly everything else. When he refuses to sit still for books, I am convinced it’s b/c I just didn’t read to him enough. When he crawls funny, I am sure it’s my fault, too. And when something truly IS wrong, everyone else automatically assumes I am over-reacting b/c of all his doctor’s appts in the past.

It was a very hard way to get introduced to motherhood, though I am eternally grateful for him…and would do it again.

[Anonymous]

When I was searching for help with Justice I found this article. I wish I had found it with Luke. I really needed it. Have your husband and family read it too. You are not crazy and they are only making the situation worse by saying so. I became very depressed because of my husband and family not believing me. My husband was only listening to what everyone else was telling him and thought I was wrong. Oh , and the people that thought giving him meds was just horrible. Just give him colic tablets and probiotics they said. We all know those things can help, but not take care of it all.PLEASE read the article below. I know it’s long, but well worth it.

infant reflux – why is this so hard?

In order to survive your child’s infant reflux or GERD, you really need to understand that you are not the only one having difficulty managing. Of course, you already know how stressful and exhausting it is, you are living it, but to really understand, from a practical, intellectual standpoint can make all the difference. You need to know that it’s not just you and that it is really, just very hard. There are several aspects of having a baby that is suffering from infant reflux or infant GERD that make it particularly difficult for parents.

The emotional stress infant reflux puts on the family can be unbearable and is absolutely limitless. This can affect every single aspect of the entire family. Babies with reflux are well known for spending a great deal of time upset, irritable, crying and even screaming the most intense, piercing screams one could ever imagine. Parents, by nature, are programmed to respond to a crying baby and address the reason behind the crying. It’s heartbreaking for a parent to not be able to help their baby in times of great need. The more the baby cries, the more stressed and upset they can get when unable to comfort and help the baby. Some may even secretly begin to have feelings of dislike or anger towards the baby for being so difficult and unhappy. Such feelings can make the parents feel even worse since they know they are not supposed to feel that way. Feelings of guilt and sorrow can begin to emerge. Guilt over not being able to make the baby stop hurting, and for mothers, also in wondering what they could have done during pregnancy or delivery to cause the baby’s reflux. Parent’s can feel sorrow and deep sadness coming to the realization that the perfect, happy and healthy baby of which they dreamed, does not exist and they instead, have a baby with great health demands and possibly special needs. Many things that other parents and babies are able to do, may not be possible and they almost mourn the healthy baby they had expected and all the things they are missing. Sheer exhaustion can magnify all these feelings as babies with reflux are notoriously poor sleepers, sometimes sleeping only an hour or less at a time through the night. Other children in the family can begin to feel left out or neglected when the new baby demands such intense and constant care far beyond the enormous amount of care that baby’s normally require.

Moms can get particularly tired and frustrated in frequently being the primary caregiver, they can become the only person that has any success in feeding or comforting the baby. This adds extra demands to mom and can leave dad feeling helpless, left out and frustrated in not being able to do more to help. This can indeed put added pressure on the marriage.

Many parents begin feel isolated from their family and friends who just don’t understand how hard it is and how much their baby actually suffering. Well meaning loved ones can sometimes dismiss new parent’s concerns as being over reactions and unwarranted. They may inadvertently blame the parents, saying the baby is spoiled or needs to be left alone to cry it out. This can leave parents feeling like maybe it is their fault or something they are doing wrong, adding to the stress and feelings of guilt. When you are already struggling to get through each day these comments, or lack of support from those you love can be devastating and some may begin to pull away and avoid their family altogether, at a time when they really need all the understanding and support they can get.

Many times, particularly when the baby has GERD and the possible development issues and special needs that can accompany it, mothers may have a difficult time being around other mothers whose children are happy and healthy. Everyone wants their baby to be the smartest and healthiest and when they are not, or begin to fall behind their peers, it can be very difficult to accept.

Doctors, who are expected to know all the answers and fix the baby can become an added burden to parents who perceive them to be unwilling to help or even listen to the parents concerns. They are asked to wait weeks or months for appointments, or test results, and then may not get any real answers or solutions anyway. They are carted from doctor to doctor, each saying the next will help. They are asked to make decisions when they have little understanding of the pros and cons and they do not know whom to ask or where to go for an impartial opinion.

Financial issues can begin to arise, when expensive formulas, medications, and numerous doctor appointments or hospital stays get too much for the household budget.

Overcoming these ever present issues can be a daily battle, but is possible. Some days you will thrive and come out on top, feeling like you can handle anything, other days will be more difficult and you may just want to crawl under a rock. The trick is getting the number of good days to slowly outweigh the bad and there are ways to do this.

Justice’smom2007-1-27 19:49:21

[Anonymous]

THANK YOU!!

[Anonymous]

Shelby, That is a great article! Thanks for sharing!

[Author]

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