How do you deal with others wanting to start a SN conversation? - Page 3

[MotherWhimsey]

Amen. I might say things like "we hope that they'll find a cure soon." Which is true, we do, but realistically do we think they'll find one and have it fully tested soon enough to save our kid? Not really. But we leave that part off cause people can't deal with it. They need some little happy way to make it all better and keep their bubble in tact. They can watch him get sicker and sicker and still think "he looks good, they'll come up with a cure, he'll be fine." and then they don't have to deal with it. So that's kinda like what Starlein is talking about.

As for the hugs and snuggles, I'm not really a huggy type person, so it doesn't do so much for me unless the other person understands. I could say "my son is going in for a blood draw" and people would pass the hugs, or I could post that my son is going to have to have a major surgery or something more serious and I'd get the same thing. To some people dr's appts and blood draws are a big deal and are hard and deserving of hugs, and that's just not our reality. My son tells techs where he wants his blood drawn (picks which finger or which hand/elbow) and never cries. We're at dr's several times a month. It's just normal. So while I know that they have good intentions, till they have lived it at least in some part, they don't really know what they're giving hugs for. A virtual hug is totally different than adding something like "You've been in my thoughts lately" or "if you need anything, just let me know" or something like that which is truely supportive.

[Labbemama]

You know having watched what my little sister lived through having the six heart defects that she did and outgrowing her ciculatory system and enduring multiple respiratory arrests and two comas...experimental surgery. I can't say that the "rainbows" of her life are any different than any other human beings. She had a first birthday that made her one in ten million and surviving birth made her one in a million. But tell that to a kid who sadly watches because she can't go out and play with her siblings. The "Rainbow" in all of that is that some kids AFTER her will live because the doctors learned from the mistakes that they made in her surgery

I lost a baby late in pregnancy and I lost my sister at age 8, seeing what it did to my mom....sigh.

I had never connected the platitudes. But yeah I never felt more alone than after the loss of our baby and the things ppl would say are similiar to the ridiculous things ppl say in regards to SN. Judgements, euphemisms,nosiness, flat our denial at what it means or that it is happening. :

Having a SN kids can be a grief process. Recognizing your child's limitations, people distancing themself from you, the stress.

What gets me is not so much other parents BUT professionals and their misunderstandings or rigid ideas.

[Labbemama]

Originally Posted by starlein26

The way grieving parents present themselves to "the rest of the world" is much, MUCH different than their interpersonal experience. Watching your child die, and being unable to stop the process, is the.most.horrific experience in the entire universe. To extract some type of "rainbow" from this experience is either done to appease others (who cannot deal with your pain) or a type of coping mechanism that I'm unaware of.

Starlien26, I think sometimes it is very hard to see the rainbows until after the storm has passed. KWIM? losing a child is a club no one wants to be in and I pray that those who say ridiculous things about it will never have to understand just how awful that sounds to someone who has lost a child. When I lost my baby ppl said Oh aren't you happy she is with Jesus and I just wanted to say no. I want my baby back and Jesus the baby snatcher does not make me feel warm and fuzzy get the blank out of my house and take that casserole with you. It wasn't until much later that I saw any glimpse of hope. (like if I had carried that baby longer, I would not have my daughter Erin.) Same thing with my sil-to-be now. IT Took YEARS for anything good out of the whole ordeal to be noticed by me.

[2bluefish]

Originally Posted by starlein26

The way grieving parents present themselves to "the rest of the world" is much, MUCH different than their interpersonal experience.

Amen to that! I'm so tired of being told that I've been the strong one. I'm not strong - repressed maybe...

[starlein26]

Originally Posted by 2bluefish

I'm so tired of being told that I've been the strong one. I'm not strong

When I hear that I feel so weird, so misunderstood, so hurt. It's a hard line to swallow on so many levels.

[MotherWhimsey]

Originally Posted by 2bluefish

Amen to that! I'm so tired of being told that I've been the strong one. I'm not strong - repressed maybe...

to me it makes me unable to mention anything difficult or whatever with them. Cause, I'm the strong one, remember? I must not need that kind of thing.

[mamaverdi]

Originally Posted by preemiemamarach

I feel like the black cloud of doom when I walk into a room. I don't really want to talk about DS with my friends who have healthy kiddos because I'm such a freaking downer. Good to know I am not alone!

I actually had a friend quit being my friend with these very words: "you're such a downer." :

[Mizelenius]

I want to clarify something-- my analogy of the "rainbows" was something inspired by a book, and really, I wasn't thinking about children dying when I wrote that. I was thinking about children with non-terminal SNs. The book (written in Spanish-- I don't think there is a translated version, unfortunately) is about a boy born with 2 eyes. The rest of people in his society have 1 eye. Everyone feels sorry for him, they want to know what is wrong, try to cure him, have him do things that only people with one eye can do (and he can't), etc. However, he finds that he can do things that other people can't-- they see the world in black and white, whereas he can see the world in color. While no one can see the color he can, they find that they have so much to learn from the beauty of their differences.

Originally Posted by Labbemama

I pray that those who say ridiculous things about it will never have to understand just how awful that sounds to someone who has lost a child.

I would never, ever, ever say that to someone, or even think it. My mom, who happens to be religious, has always been against the idea that it was "God's plan" for someone to die, though I know some people find comfort in that. In the case of my friend, it wasn't God's plan at all, IMO . . .it was a clear case of medical malpractice. Recently I was speaking to her mom (she is like my aunt), and she said that my friend was meant to be with us only a short time. I just could not respond more than a little "uh-huh." I didn't argue with her out loud, but in my head, even though 23 years have passed, I cannot truly accept that it happened. My dad died shortly after my friend, and in HIS case, I could accept it better. He seemed like his life had been full of sadness, and maybe he really was at peace dying . . .but other than the fact that both he and my friend had died, the situations had nothing in common.

I actually had a friend quit being my friend with these very words: "you're such a downer."

That is just incomprehensible to me. There are no words.

[BookGoddess]

Originally Posted by mamaverdi

I actually had a friend quit being my friend with these very words: "you're such a downer." :

Wow!

I'm sorry.

Originally Posted by Mizelenius

I want to clarify something-- my analogy of the "rainbows" was something inspired by a book, and really, I wasn't thinking about children dying when I wrote that. I was thinking about children with non-terminal SNs. The book (written in Spanish-- I don't think there is a translated version, unfortunately) is about a boy born with 2 eyes. The rest of people in his society have 1 eye. Everyone feels sorry for him, they want to know what is wrong, try to cure him, have him do things that only people with one eye can do (and he can't), etc. However, he finds that he can do things that other people can't-- they see the world in black and white, whereas he can see the world in color. While no one can see the color he can, they find that they have so much to learn from the beauty of their differences.

That sounds like an amazing book. I wish we could find that in English. Do you know what the title is in Spanish?

[Mizelenius]

Originally Posted by BookGoddess

That sounds like an amazing book. I wish we could find that in English. Do you know what the title is in Spanish?

Unfortunately, it's out of print, but here is the info:

El niño que tenía dos ojos

The only part some people might disagree with in the book is that, at a certain point, everyone forgets that he has two eyes (including the boy)-- at least when it comes to race, the ideal isn't a "colorblind" world (where no one sees race) but more of an appreciation for diversity, not an ignorance that it does not exist.

The illustrations are gorgeous, though, and the text isn't extremely complex. If you find it for a decent price I could easily help you translate it into English.

[preemiemamarach]

Originally Posted by MotherWhimsey

As for the hugs and snuggles, I'm not really a huggy type person, so it doesn't do so much for me unless the other person understands. I could say "my son is going in for a blood draw" and people would pass the hugs, or I could post that my son is going to have to have a major surgery or something more serious and I'd get the same thing. To some people dr's appts and blood draws are a big deal and are hard and deserving of hugs, and that's just not our reality. My son tells techs where he wants his blood drawn (picks which finger or which hand/elbow) and never cries. We're at dr's several times a month. It's just normal. So while I know that they have good intentions, till they have lived it at least in some part, they don't really know what they're giving hugs for.

This is so, so true. It's hard for me to even read posts in the non-SN forums (here and elsewhere) with titles like 'freaking out about heel stick on my baby'. My 17 month old has probably had about 50 blood draws already. Once, during a particularly long one, he fell asleep.

It's very isolating. I have a horrible attitude when people act like something I find totally routine (like a trip to a children's hospital) is a major event- so I end up just closing off from people entirely. The endless platitudes and prayers and comments that 'I'm sure he'll get better, he's just so sweet and cute!' have worn me down to the bone. I probably need therapy myself, but I don't have enough time away from work because it's all sucked up by my son's appointments.

Slightly OT- I had a friend several years ago whose sister had been murdered in their home when he was in college. He came home from class and discovered her body. When I knew him, he was almost 30. Anytime we were outside of the office, he eventually started talking about the incident, and would get extremely emotional. People started avoiding talking to him at parties, nobody wanted to take his calls....I understand now how it feels for something to not just be the central focus of your life, but to be your entire existence. I wish I could have been a better friend to him and just listened.

[2bluefish]

Originally Posted by preemiemamarach

It's very isolating. I have a horrible attitude when people act like something I find totally routine (like a trip to a children's hospital) is a major event- so I end up just closing off from people entirely.

I just sat there numb the other night when our neighbors started going on and on about how traumatic it was that their newborn baby had to go back to the hospital for a night cause she got a little dehydrated not nursing well. They got to room in with her - what was the big deal?! I guess it would have been a big deal for us too with our first. But it seemed incredibly insensitive that they would bring that up in light of the fact that we were separated from our baby because they had to rush him to a NICU an hour away, we didn't know if he would live or die, we were asked to consider pulling the plug, and we weren't sent home with "you've already had your miracle, good luck". I just don't know how people can fail so completely to see another's perspective. I don't *think* I was that insensitive before Juju.

[mamaverdi]

I'm gonna ramble for a minute.

It's important to take care of your emotional needs. I would love to find a therapist, but I find that even therapists have a hard time understanding.

I'm not sure if I was as insensitive before my youngest son was born, but yes I do remember times where I said something that now makes me cringe.

I have become more compassionate. I have become more sensitive. I have also become inurred to things like blood draws and hospital visits. And some of my friends find it odd. Some though have become more sensitive. They know that I know that it is a big deal to them. In the path of their life a visit to the hospital for dehydration is a big deal. Some of them realize that I hope that's the biggest deal they deal with; others think that will be and so don't understand my attitude.

There aren't an guarantees in life, yk?

I have said to one friend, when you've been there, get back to me.

It's okay to feel your feelings; but it's okay for them to feel theirs.

Allowing people to be who they are, insensitivity and all, is something I'm working on. Cuz I really can't change them, and it just gives me more angst and grief.



I wish my SN mom friends had more time to get together.

[2bluefish]

My mother in law said maybe people share their "little" (for lack of a better word) traumas in a weird attempt to relate. Maybe?

[Mizelenius]

Originally Posted by mamaverdi

There aren't an guarantees in life, yk?

My mom's friend is vision impaired, slowly losing her vision for the last 10 years. She said this to me, which I've always kept in my head. She said, everyone is temporarily-abled. I always think of this-- just because ATM, my family does not have SNs, at any moment, that could change. Life is fragile.

[preemiemamarach]

Originally Posted by 2bluefish

My mother in law said maybe people share their "little" (for lack of a better word) traumas in a weird attempt to relate. Maybe?

Our son's PT called me, distraught, after her dog had emergency surgery and almost died. She has no kids, this is how she relates to what her clients' parents deal with, I guess. It reminded me that I once had that kind of emotional response to stuff involving my pets, which stopped after my son's issues began. I just don't have that much emotion to spread around anymore.

I actually wasn't offended by the attempt to relate via her dog's issues- i found it much less offensive than people who insist that everything with DS is going to spontaneously improve.

[ShadowLark]

Originally Posted by starlein26

Here's the thing, since you asked. That would be a non-supportive thing to say. Some here have children that are dying. Where's the rainbow there?

Outsiders want to believe that we experience rainbows because that makes them feel better. My son's horrendous plight hasn't been about rainbows.

Bot you KNOW that he's dying. I think the rainbow there might be that you can shower him with love EVERY SECOND. Yes, I try to do that, too. But I've also been FAR too guilty of thinking that I have SO much time to fix things if I mess up.
Anyway, there are ALWAYS rainbows. The trick is being able to find them. It might take YEARS to even heal enough to look, but they're there.
I guess I see it as - this could have ended as a miscarriage. It didn't - I get to hold my precious babies! I know my kids are healthy (Autism isn't fatal, after all), but I'm also gambling six more times. Six more babies - and NO guarantees with any of them! But I will be grateful for every MOMENT, even if something goes horribly wrong, because at least I got to hold my baby. If nothing else, I'll get to say goodbye. And if I'm REALLY lucky, I'll be able to say "he LOVED his mobile" and "he used to make a game out of sliding off the pillow onto the couch" - both stories about Brendon. Or how about "she LOVED being held. I think she was storing up 100 years of love in the __ years she was given". That's my girl, to be sure, but it's also my friend's baby - the one who died of Neuroblastoma at 15 months old.
And my friend has found a purpose in fighting back against Cancer. There ARE rainbows - she's living proof.

[preemiemamarach]

Originally Posted by ShadowLark

Bot you KNOW that he's dying. I think the rainbow there might be that you can shower him with love EVERY SECOND. Yes, I try to do that, too. But I've also been FAR too guilty of thinking that I have SO much time to fix things if I mess up.
Anyway, there are ALWAYS rainbows. The trick is being able to find them. It might take YEARS to even heal enough to look, but they're there.
I guess I see it as - this could have ended as a miscarriage. It didn't - I get to hold my precious babies! I know my kids are healthy (Autism isn't fatal, after all), but I'm also gambling six more times. Six more babies - and NO guarantees with any of them! But I will be grateful for every MOMENT, even if something goes horribly wrong, because at least I got to hold my baby. If nothing else, I'll get to say goodbye. And if I'm REALLY lucky, I'll be able to say "he LOVED his mobile" and "he used to make a game out of sliding off the pillow onto the couch" - both stories about Brendon. Or how about "she LOVED being held. I think she was storing up 100 years of love in the __ years she was given". That's my girl, to be sure, but it's also my friend's baby - the one who died of Neuroblastoma at 15 months old.
And my friend has found a purpose in fighting back against Cancer. There ARE rainbows - she's living proof.

I'm pretty sure I will never find a rainbow in this if my son does, in fact, die from this.

[MotherWhimsey]

yup, still not seeing the rainbows. My son has enough personality and love that you could say "he has to fit it all into a short amount of time," but he would have the same amount of personality if he lived 70 years, and that would be way cooler. Saying that he has to fit it in to a shorter time is just a way of making people feel better. Really. And knowing your child is probably going to die before they hit their teens is really very uncool. You sit around thinking "is this what's going to take him?" You anylize everything trying to determine how you can patch up the leaky boat so it keeps floating longer. And you feel incredible guilt when anything fails. You feel like you should have been able to prevent it, that maybe if you had known earlier or done more, you could have been able to stop it. And that's about as far from rainbows as you can get. Guilt and dread, that's about it.

[MotherWhimsey]

oh, and you have to make horrible choices. Do you give your dying child more attention because you have to fit it all in before they die, but then you risk seriously screwing up the kid that's going to live? Or do you give the kid that is going to live more attention cause the other one won't grow up to be screwed up?