Just Want To Vent

[Anonymous]

I can’t stand it when people who have never had reflux babies say, “Oh, it’ll get better. It’s hard, but you will survive.”

Ok, first of all, this is my second refluxer, food aversion, milk allergy kid. Obviously, I’m going to survive.

Second of all, if you’ve always have perfectly healthy kids, how can you even pretend to know what it’s like to have a chronically ill child? Puh-lease. Just don’t say anything at all.

Grrr.

[Anonymous]

I understand your frustration. I think that people are trying to be encouraging but don’t understand unless they’ve been in that situation. That’s why this site is so great- people know what it’s like and are here to help. Hang in there. I really never thought we’d see the light at the end of the tunnel. HUGS.

[Anonymous]

just want you to know that i understand.

Sending big hugs your way!

[Anonymous]

Thanks for being so understanding! I know that people are just trying to be optimistic, but the long nights of projectile vomit, refusing feeds, and furniture and carpet that always smells like rotten neocate wears on a person! In the long run, our kids should grow up to be healthy and happy and I try to keep that perspective. The sleep deprivation can sure get to a person, though. Thanks again for being so kind.

[Anonymous]

I know exactly how you feel. I often wonder if they really just want to make it sound as positive as possible for you and for themselves (they never want to believe it could happen to them) I used to get that all of the time. Now, I have a little boy pending an autism dx and I still hear things very similar (oh it’s not that bad…a little “rainman” or “he’s so cute, girls will still love him” …what is THAT supposed to mean?) I feel your pain. Hang in there! Now I just take those things with a grain of salt and keep on keepin on for my child.

[Anonymous]

cool, jill, if you ever drop your box of toothpicks, he’ll be able to tell you exactly how many there are. (sarcasm intented!!!)

have a 12 year old autistic boy at our church. we are LDS, and boys are ordained deacons when they are 12 and they pass the sacrament to the congregation. today, kevin pointed out to me that ashton and his dad were sitting on the deacon’s bench and he wondered if they were going to try letting him pass the sacrament. his dad stayed right with him and helped him along. it was so neat to watch. he did really well and you could see the look of pride on his dad’s face. right near the end he said, “i need to get out of here.” but, i think it was because someone had a screaming baby that they were carrying out and i bet the noise bothered him.

people want to be encouraging, sometimes they just don’t know what to say. my sister said something once to a mother of a child with cerebral palsey that was meant to be positive, but came out hilariously HORRIBLE—-and to this day she probably still wants to die every time she thinks about it. it would rate WAAAY up there on one of the most stupid things you could say to a mother of a child with a handicap. most people don’t mean any harm.

[Anonymous]

Hey,

I’m LDS too!

[Anonymous]

My older daughter has a fairly new diagnosis of epilepsy and people are often asking “oh… will she outgrow that?”…. they mean well, but I always think… ah, let me look into my crystal ball.

Sometimes when people don’t know what to say, they say whatever they can think of, when they should probably just keep their mouth shut, or say something empathetic like, “That sounds really hard.”

[Anonymous]

soooo, lori, sounding incredibly stupid here—-what IS the prognosis when a young child is diagnosed with epilepsy?

[Anonymous]

I think I am famous for saying the “wrong” thing, although I do always mean well. I have gotten a lot of crazy comments with both boys with their dx but then again, I know I sometimes say stupid things, so I do just let it slide, or because so many of the comments are the same, then I have a few token whitty comments that I say back if I am having a particularly sarcastic day

Hang in there. I do think people mostly mean well, but on our toughest days it is so hard to let things slide. Just remember they will never know what you are going through, so they will never understand. I spent a lot of time (not just with reflux but with the boy’s other issues) trying to get our families “to understand” and it just ended up being a waste of effort. It was effort much better spent on my boys.

You are an amazing mom and you are so right, and they will never understand what you are going through with this.

We are all here for you!!!

[Anonymous]

Christine- It’s not stupid…. Prognosis for epilepsy in a child who is otherwise as far as they can tell neurologically normal with no obvious cause for the seizures is that approx 75 percent of kids will outgrow their epilepsy. Doctors like to focus on that to be encouraging… that almost two thirds will outgrow it BY PUBERTY. I usually think, don’t they realize that puberty is a long way away… do I really want to lose all the great stuff in between because I’m waiting for the day that this will stop? Also, in Sarah’s situation we have no family history and no obvious reason for the seizures which means that there was a 99.8 percent chance AGAINST her having epilepsy. That being said, I don’t put much faith in odds. If you’re that 0.2 percent, like us, than it doesn’t really matter how likely or unlikely it is that something will or won’t happen. I personally find that hanging on to numbers is harder than accepting the reality of the present.

Sorry, I guess that’s more info than you were asking, and totally off topic from this thread. Thanks for letting me vent.

… and HUGS to anyone else who feels that others don’t get it. This is a safe place to let it out.

s&h’s mum2009-03-10 15:02:04

[Anonymous]

I feel ya on this one- I just wanna punch the people who tell me that their baby is a little porker Yeah nice thanks cuz I struggle to get him to eat alll day every day grrrrrr

[Anonymous]

ok, one of our favorite supid things that people have said to our celiac girls is……….can you eat white bread? how can someone with normal intelligence not know that white bread is made out of wheat flour?

lori, my neighbor has epilepsy. he is the local high school drama teacher and my kids have been in several plays with him and i never knew he had epilepsy until this last year. i also have a friend who’s son would have seizures—but only at night—can’t remember what the diagnosis was, but it was not regular epilepsy.

kevieb2009-03-12 15:00:35

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