Reflux… It’s not just reflux.

Sarah,

Og how i can identify with you. somebody said: “ignorance is a bliss” and he/she was right in my opinion. when people don’t see what you live on a day to day basis with a child with reflux, they WOULDN’T KNOW that this is a terrible desease that affects our children’s life. it really P. me off that my ped, wasn’t concerned about my baby lack of gain wt just b/c she was still gaining, even though i was spending all day and half of the night trying to get her to eat. and even more the s. setence i used to get all the time “She’ll outgrow maybe by 6 months”. after many, many tears i finally found the corauge to “yell” at my ped, even broke down in her office that we should do something more for my baby, that when she finally felt sorry for us or had enough of us coming to see her all the time and order some more test and finally the tube. i didn’t care what she felt, i just care that something more was going to be done for my LO.

ANY MOTHER OR FATHER who has a child with severe reflux had endured greatly to help their LO, but MOST had endured the child with the pain. Sarah, you are such a brave mom; i would n’t let somebody’s comment offend you. don’t get me wrong cancer is terrible desease, i have lost loved ones to it (very young), but b/c they take cancer serious, there is lots of help for it, but reflux, very few poeple take it seriously, especially the doctors.

iam sorry this turned out to be a book, but lately i have been feeling on my low side and when i saw your post i had watery eyes. i heard that comments many times and my baby also ended up with a tube to thrive and still pukes a lot and eats very little by mouth.

big hugs to you. don’t mind what some people said. sometimes i just smile and said ” you know i have a very good book and several forum that contains many family stories and info about reflux; would you like to read that info?

I have to agree with Christine on this one. As you said, reflux is a horrible, horrible thing and it does have far ranging repercussions that no one who hasn’t experienced it would understand. You are constantly worried about your child and always having to fight to get them the best care. And, honestly, Quinn’s case sounds really extreme. But… the vast majority of reflux cases don’t fall into such an extreme range. So, the woman was dealing with the idea of losing her child at any moment and didn’t realize that reflux could also be life threatening. One of my co-workers recently lost his 18 month old son to brain cancer. Watching him deal with that really helped put our reflux and allergy issues into perspective for me. We spent 6 months with Kaelyn choking and turning blue and spitting up so much that she fell off the weight charts, but now that she’s turned a corner, we don’t really have to worry that much. A parent of a child with cancer is constantly worried that it will come back. We all have our own battles to fight and we tend to get so wrapped up in them that we forget that other people have battles that are different , but equally difficult.

I completly understand both sides. I don’t like when people dismiss other peoples difficulties either. I know when I first got on this board I was venting about having my second refluxer and someone made a comment about how things could be so much worse. I realize that and people said that to me all the time, but it didn’t make me feel any better and it surely didn’t make the reflux go away. When I read what all you guys have gone through I realize how thankful I am that we never had to go through anything like that. I do understand the other moms perspective though too. She has no idea how hard it has been for you guys and I’m sure didn’t mean any disrespect. I’m sure you know that too, but I’m also sure it hit you to the core because it has been really hard for you guys. I think for her she just meant that from day to day she doesn’t even know if her baby will survive. I hope all this makes sense.

Sarah, I can understand how at a particulary fragile time you were upset by someone’s comments. I think we can all relate to that regardless of the circumstances. When we are having a tough time we are more sensitive to other people’s comments.

It is so hard in life to really truely appreciate another person’s POV, and so sometimes we say things that hurt people without even realising we have done it. I know I have been guilty of that. I suppose what I am saying is that to a mum who’s child is stuggling with cancer, where death is a thing that could happen today or tommorrow, they may not have the time to apprecaite or understand someone’s else’s situation or to monitor what they are saying to someone else. Personally, I wouldn’t be offended under those circumstances.

People criticize what they don’t understand. I have many relatives, friends, church friends who I haven’t spoken to for months, etc. They just don’t get it.

Why don’t I let him CIO? He would then figure out he has to go back to sleep on his own and he would sleep through the night. OH, WOULD HE GET UP AND TAKE MYLANTA? WOULD HE CLEAN UP HIS SHEETS WHERE HE VOMITED?

I have build little walls around the outside of us and only let certain people in. This, of course, is hard to keep the walls up when I am in public, but there are only a certain few who really GET what we are going through.

So sorry you had to deal with this. You have dealt with SO MUCH with Quinn and you needs hugs not bad comments.

So, here is a big hug!!