That Thought

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Okay. I need some help with this and I'll try to word it as clearly as possible without my usual babbling.

First I want to say that it's only happened a couple of times in the last 2-1/2 months. Also, that I've spoken with my therapist about it and she says that it's perfectly *normal* that this would come to the forefront for me, right now.

But in posting this, I don't want it to be only about me, but ANYONE who has had "that thought".

(Edited bit above because I bugged up big time, my apologies).

So, when you're child is first diagnosed and especially after a reaction, you realize that your child could actually DIE from his/her PA. It's somewhere buried in the back of our heads (and maybe not everyone's) that we have a greater chance of losing our PA child than we do our non-PA child (although no one wants to lose any of their children).

Then, you start on the journey and you recognize that you do everything in your power so that won't happen to your child. "That thought" re-surfaces when there is an FA death, and we, as a community, are hit hard.

Since Ron died, and again, it's only been a couple of times, but "that thought" has surfaced a bit more from the back of my brain. I mean, 99% of the time, "that thought" isn't even there anymore.

One morning, no particular reason at all, except something struck me that morning, grief wise, after walking the kids to school, I came home, sat at the window and looked up at the sky and sobbed to Ron that please, he be the guardian angel of Jesse (as I believe he is of both of his children) and please don't let me lose him too.

Rational Cindy doesn't have "that thought". And even the Cindy I've been the last couple of months since Ron's death, again, has only thought about it a couple of times. But that one day, as I sat here sobbing, it was just horrible.

I understand that maybe for me "that thought" is in there with the grieving process and scared process.

But life couldn't be that cruel, could it?

Many thanks and best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

[This message has been edited by csc (edited May 01, 2006).]

On Apr 30, 2006

Life can be that cruel, but one can hope that it can show some mercy every once in awhile.

While I am not a Widow or a single Mom, I am familiar with 'that Thought'. Circumstances in my life have left me with 'that Thought' running through my head every day. I believe it can happen, I know it can happen, I don't believe that we are immune from becoming a contributor to fatality statistics, and most everything I do is related to my doing my level best to insure that if it were to come to fruition, there wasn't something else I could have done to prevent it.

Life is fragile and fleeting, and it is filled with much randomness and irony. To ignore the reality of 'that thought' is irrational, and I would guess the degree to which it controls your life would be a better measure of rationality.

In the end, fancy words aside, I'm sorry -- and I just wish I could be there to give you a BIG HUG!!!!

On Apr 30, 2006

Cindy, I don't fall into the category you mentioned of widows or single moms, but I, too, have "that thought" from time to time. For me I believe it "came to the forefront" when a little boy I had taught in bible class was killed in a car crash caused by a drunk driver. He was just 2 years old. That a life had ended before it began and that it was someone I had held in my arms and *knew* made it just too real that I could lose my own son. Then, again, later when I took out a life insurance policy on him when it never occurred to me that I needed one with my daughter. Kayde is the oldest and from the day she was born I have thought about her wedding, her babies, her life as an adult. But, then after the diagnosis of Manuel's FA, I realized those thoughts are always "IF's", not "WHEN's" with him. It

On Apr 30, 2006

My non-PA child has been having blue lips some mornings lately. I have been to the ped and referred to a cardiologist. I have had "that thought" about both my children now, the MFA one and now the KNA one. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] And I am not a widow or single parent.

I am hoping it is a benign condition. becca

On Apr 30, 2006

Oh, sorry. First of all, it's late and I'd like to respond to everyone who so kindly responded *properly* later.

I know that ALL of us have had "that thought" regardless of our marital status. I am SO sorry - I didn't mean to diminish anyone because they hadn't met "widow" *status* [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] yet.

I know that when Jesse had his last anaphylactic reaction three years ago, of course "that thought" came more to the forefront of my brain (I don't know about his Father's at the time, and can't ask him now) and I do know that I suffered post traumatic stress for a few months after that because I posted about it here.

I am SO sorry because I did try to word it very carefully and clearly and still obviously I did bug up because first of all I know there aren't that many single parents (for whatever reason(s) ) on this site and so the responses I would be getting would be from whoever chose to respond. So, again, my apologies. What a big bug up that one was.

It's just that "that thought" is really so far in the back of my mind 99% of the time and had been for quite awhile (3 years) and with Ron's death, there it was, right there again. And like, Oh My God, No!

So, my sincere apologies.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On Apr 30, 2006

gvmom, I checked air fares on Friday to NYC and California, and man, I was SHOCKED at how much they have gone up since I went to either place. Not something that's happening any time soon I can tell you, or else I'd come and get that hug in person (and yes, scare the bejesus out of you [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] ).

I could really use a good hug right now and the funny thing is I'm not a huggy person (only with my kids), but just really feel that need right now.

And again, to everyone, my apologies for how I so badly mis-worded my original post.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On Apr 30, 2006

[b]or else I'd come and get that hug in person (and yes, scare the bejesus out of you ).[/b]

That would be one of the best scares I could ever have!!! Just remember to put a bit of cotton in your ears before you ring the doorbell, cause I know I'd let out the biggest and loudest 'OH MY GOD!!!!!!' you've heard in a long time --- then give you the biggest hug!!!!!

On Apr 30, 2006

You know what I just realized? I wanted to discuss "that thought" and what brings it to the forefront for anyone/everyone. I shouldn't even have mentioned responses from particular people (marital status wise) because it has nothing to do with it.

So, for me, "that thought" came to the forefront for me when Jesse had an anaphylactic reaction three years ago. Then, it kinda went away (though there in the recesses of your mind).

And it really came out about 1-1/2 months after Ron died.

So, what do any of us do with "that thought", what triggers it, and how do we deal with it and make it recede again?

Forget about anything to do with marital status - but say perhaps a divorce, separation, death (that's marriage wise) *might* be a trigger. KWIM?

Again, I am SO sorry.

becca, please let us know how your wee guy is. I am so upset to read what you posted. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On Apr 30, 2006

My son has been away most of this year either in Scotland or busy at school here in CA.

He came home for one week this week. I looked at him lounging as we got caught up on some TV show and I realized I did not think Peanut I just thought Paul.

That scared me. I told him "watch out for me while you're home." I was afraid my guard had gone down so much since he was away alot that I might not be the safest for him right now.

I mean there are no unsafe foods in the house, it just struck me I was seeing Paul and not Paul thru that haze of peanuts I usually see him in.

I hadn't felt my guard down in so long and it scared me. He's a big guy now and takes care of his own allergy but I do the shopping and cooking while he is here. Mostly anyway.

For once it was nice too. To just see Paul and not see that potential for the disaster we all know lurks. It might be the first time in a LONG time I've seen just Paul, it was nice, I liked it.

I'm always a bit scared he'll encounter a hidden peanut but I am more scared some horrible person with no value for human life will take him or my daughter away from me. That scares me the most actually.

Peg

On May 1, 2006

I think I worry more about other things than I do PA. I think there is a greater chance that something else will happen than peanuts being the issue.

Sometimes I think she is safer because of the PA, people tend to watch her more including me.

On May 1, 2006

Cindy, you need not apologise for the wording of your first post. I think it is very natural that death is very near the surface for you right now, with fearful thoughts ready to spill over with the slightest trigger.

Just a short time ago you suffered a terrible shock. You know how suddenly someone can be gone. Having a child with a life-threatening food allergy is a scary thing. "The thought" hovers for all of us.

That day you needed to let some emotion out, to have a good cry and to find a way to connect with your husband. And I'm glad you had the opportunity to do so.

My best to you. You are handling it admirably.

On May 1, 2006

Cindy.

Big Hugs.

I can only imagine that the loss of your husband has made you 100 times more fearful of losing another loved one. And there is no one closer to us than a child. I shudder even at the thought of losing one of my children.

What makes it so hard is that our PA\FA kids are particularly vulnerable to just plain bad luck, i.e. being in the wrong place at the wrong time, someone else innocently eating peanuts and we don't see, etc. etc. As our kids get older and go out on their own we lose direct control over their environment and that lack of power makes us even more afraid - it's something we can't control.

No matter what anyone says about anyone can get run over by a bus, etc. (all those comments about accidents, unforeseen events) our kids ARE more vulnerable and as such we have to live daily with the thought that we could lose them for no other good reason than they happened to touch something that some kid had smeared peanut butter on. This is extremely debilitating emotionally.

But this is the way it is. Unfortunately! I too have my moments of paralyzing fear. They may come over me for no reason whatsoever. I may just look at my son who is being good for the first time in a week (LOL) and shudder at his vulnerability and frankly my only thought is that I'd probably kill myself if I ever lost him.

I actually have worse thoughts that I am ashamed of. I have two sons, one PA, one not. And I am more afraid of losing my PA son than my other. Is it because my PA son is my first born? Is it because he's more vulnerable? Is it because my non-PA son is 3 and a willful, screaming monster most of the time? I don't know. I hate myself for thinking that. But then when my 3 year old swallowed a 50cent coin and almost choked to death I was begging, pleading, crying with the powers that be to save him and it hit home just how much I loved him.

Barb

On May 1, 2006

Cindy,

I think it's completely understandable that *that* thought would resurface now. When you lose someone you love, especially suddenly, I think everything becomes more fragile. No worries about your initial post for me...it was quite clear to me what you meant.

As far as dealing with it? No great advice. For me, personally, it was on my mind much more when my ds was first diagnosed at age 1 with anaphylactic milk and peanut, and egg allergies, and when we were attempting to venture out in the world and make people understand the dangers around him. Now at the ripe old age of 4, I don't feel quite so scared right now. He's got quite a nice little social life, and those we play with definitely watch out for him.

I'm going to enjoy this feeling now...when he enters kindergarten, I'm sure I'll probably feel it more again. I think events, new life stages, different ages, can all trigger this feeling.

People in the past have mentioned statistics to reassure others, that your ds is more likely to die in a car accident than from PA. Logically, I understand this...emotionally it hasn't helped me when I've been a wreck.

I think we can take some comfort in knowing that on PA.com we're a pretty educated group about where the dangers lie, what to do in a reaction, and this information can be life saving. Must be why I camp out here so much [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

Big hugs to you. I hope you find some comfort in people's responses.

Becca....please keep us posted on your ds! Meg

On May 1, 2006

Quote:

Originally posted by mommyofmatt: [b]

People in the past have mentioned statistics to reassure others, that your ds is more likely to die in a car accident than from PA. Logically, I understand this...emotionally it hasn't helped me when I've been a wreck.

I think we can take some comfort in knowing that on PA.com we're a pretty educated group about where the dangers lie, what to do in a reaction, and this information can be life saving. Must be why I camp out here so much [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

[/b]

mommyofmatt,that is how I feel [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

CSC,that thought I understand.

Just the other day DD took a piece of *chocolate bar* from a friend,the friend (a child) said it was *SAFE* that thought was brought to the forefrount of my mind.

I allways thought it would be the cookie not the chocolate that she would take,the worse part is she did not even *READ* the ingredient list!! So yes for me right now *that thought* is at the *top* of my....

Now I feel I have to start over with her,and I thank God every day for keeping her safe.

Maybe one day I'll start a thread,not now.

Hang in there CSC (((HUGS)))

------------------ Love this site Synthia

Edited to change *think* God to *THANK* God I *think* I need glasses. [img]http://uumor.pair.com/nutalle2/peanutallergy/redface.gif[/img]

PurpleCat (((Big hugs)))

[This message has been edited by synthia (edited May 01, 2006).]

On May 1, 2006

I have held one of my children as he died. It was not because of food allergies. He was a baby. There are no words, actions, or life experiences that makes this kind of pain go away. I have sat there numbly as someone (doing their job) handed me a "menu" at the funeral home - etc..... I miss him every day of my life.

Now I have a child with multiple food allergies and asthma. I have seen one severe reaction, and some minor hive types of reactions. I do not take chances with her. My comfort zone is very narrow. There are days I can not breath. I do not want to bury another one of my children.

Yes, I have "that thought". Then my daughter steps off the school bus and smiles and laughs, and "that thought" takes a step back to give me a chance to smile and laugh too!

On May 1, 2006

I think the big thing for me is the control factor.

Cindy you have just lost your husband..something you had no control over..we can wrap someone in cotton wool, give them all our knowledge and teach them to be sensible and strict in avoidance, but as someone mentioned above there is always that "wrong time wrong place" thing going through our head. Something we have no control over..this is the thing for me anyway.

I agree with what others have said..after having to face death so close to you it is only natural that you start looking at your children with fear of losing them. Which is fine as long as it doesnt eat away at you and you can still manage to put it to the back of your mind for the other 98% of the time.

Its good that you are speaking to a proffesional about this and hopefully it wont be long before you can put those nasty thoughts away in a big box and lock it.

On May 1, 2006

Thanks for the thoughts, folks. And csc, I did not mean to make you feel bad, just wanted to be clear about where my answer was coming from. That I have that thought regardless.

I can certainly see where one loss makes us fear more, and being alone. I have "that thought" as well, after the loss of my mother.

Purplecat, my heart goes out to you for your loss. It aches to even read it. I am so sorry.

becca

On May 1, 2006

Myself, I've had "that thought" ever since I first became pregant with my first dd. That was 6 years ago! It sounds crazy, and when I tell my DH about that he just looks at me like I'm outta my mind. Maybe its a mother thing, KWIM? I think I once heard that its our subconcius' way of preparing us for the grieving process. Kinda "testing the water with our toe" so that we can handle "it" if "it" ever happens. GOD FORBID....... I think that since dd- 2 years old has been diagnosed with PA I've had those "thoughts" creep back into my mind. They're disturbing but completely understandable. I mean when you think about it, we have to tell ourselves and everyone around us a dozen times a day that our kids could DIE all in the name of protection. Of course we're going to be affectd by that, we love our children immensely. These "thoughts" are just our way of handling and trying to cope.

On May 1, 2006

Cindy - I hope you draw strength from anyone you can. You have been through a lot and dealing with the loss of Ron so young must take a lot of your psychological and physical energy resources. I'd say most of us here have "that thought" and sometimes it's easier to move forward past it than others.

My DS turns 18 next week - I often find myself wondering if it's possible for him to live to a ripe old age. He has multiple life threatening foos allergies and I don't know any adults who react to his long list of allergens. So I'm left wondering did they all die? I'd particularly like to know of adults living with life threatening milk and egg allergies since I was told when he was little he would outgrow these and he didn't. So yeah, I've been having these thoughts [b]a lot[/b] lately as well. Particularly after spending some time with Sabrina Shannon's mom, Sarah a couple of months ago. PurpleCat - I'm soo sooo soooo sorry you have lived through every parent's worst nightmare. Take care all - and big hugs to you Cindy (and LOL - I'm not usually a huggy person either!)

------------------ Jana

[url="http://www.seattlefoodallergy.org"]www.seattlefoodallergy.org[/url]

On May 1, 2006

Cindy, I've thought at times that I could lose my PA child due to anaphylaxis. Of course, my other child could get in an accident on the bus, trip and fall so hard that he damages his brain, etc. Like you said, our FA children face an increased risk of death. I think a lot of FA parents face that issue, and that's without having gone through losing someone so close to you. I haven't been on this board that long, but I'm guessing Ron was your spouse? It is totally understandable that you're afraid of losing someone else close to you. I'm being redundant, but it is 100% normal. I'm sorry you're going through this.

On May 1, 2006

Having buried parents, an ex- and good friends myself, I can only imagine how much [i]more[/i] difficult it is to go through that experience with the love of my life...

But I want to say, Cin, that there is a HUGE difference between contemplating emotionally, thinking rationally about possibilities, and the awful sense of emotionally [i]knowing[/i] that it CAN and DOES happen to you. I am not surprised that this is happening for you right now. Because first-hand experience teaches you some lessons you don't learn any other way... [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

I know that this kind of "knowing" has made DD's FA much more difficult for me to handle than for DH. He rationally knows what could happen, but he doesn't really know emotionally-- he's never buried a member of his immediate family. So it doesn't periodically reach out from the recesses of his brain and slap him silly the way it does me. Leaves me in horror, really.

When I pass those anniversary moments, I definitely find myself having "the thought" more often.

hugs}} to you CSC and especially to you, PurpleCat.

On May 1, 2006

PurpleCat, I have also experienced the unimaginable pain of losing a child (not to FA). I never truly understood the term "heart ache" until I held him in my arms as he was taking his last few breaths. My heart physically ached and still does. I lost a piece of my heart when he died. So this experience definitely affected how I handle PA with my dd. I am very protective and not just with food allergies. I try not to be over-protective but it is something I really struggle with. I think once you go through a terrible loss whether it be a child, mate, close family member, close friend, it really hits home that bad things ~can~ happen, or at least that's how I felt it affected me. I too, NEVER want to experience the pain of losing another child!

On May 1, 2006

Cindy,

Please don't apologize. I don't think anyone here felt 'dimished' in any way. I didn't get any vibes from your original post and don't think you should worry at all about the wording.

------------------ Little Man's Momma a*k*a Kendra

On May 1, 2006

[b]You know what I just realized? I wanted to discuss "that thought" and what brings it to the forefront for anyone/everyone. I shouldn't even have mentioned responses from particular people (marital status wise) because it has nothing to do with it.[/b]

You know, I kept thinking about this. Tried to really break it down in my head -- what really is my trigger for these thoughts. I think it basically comes up when I have to trust someone else with the safety of my children. Or even when I'm talking with DH about 504 stuff -- it all boils down to being related to when my kids would be with someone besides me. Does that make sense?

edited to add, it also comes up if DH and I talk about 'life' -- you know, philosophical stuff.

[This message has been edited by gvmom (edited May 01, 2006).]

On May 1, 2006

Cindy, as everyone else has posted, "that thought" has got to be much closer to the surface for you given your recent loss. For me, I've most certainly experienced it. As I posted earlier today, in fact, I wrote a short essay on what I felt like soon after my DS's diagnosis and the amount of fear I experienced was just unbelievable. Now it just pokes it head at random times, especially when something calls to my attention that my little boy is growing up and beginning to make his own choices.

It's odd though, because most of my deepest fears these days are about losing him or my family in a car accident. Maybe because I've been in several over the years. Like yesterday, DH took DS and my sister to the coast for a field trip. A couple of times during the day I found myself out of the blue terrified they were going to have an accident, to the point I'd get short of breath. It seems so irrational to me but it's there...wouldn't do much good to try to pretend it's not.

I did want to say that I actually remember going through something similar when I was a child and realized what "death" is. I had lost pets but somehow it didn't really mean anything to me until I was watching TV and they were showing scenes from Vietnam on the news (I'm dating myself here, aren't I). There was a battlefield and soldier's bodies, and I just suddenly knew with awful certainty that they were DEAD, and what that meant. I remember having terrible anxiety attacks for a while about something happening to someone in my family.

I think "that thought" is along the same lines. You know it's going to happen someday, and when that knowledge forces its way into your conscious mind for whatever reason it's like a blow to the gut. Fear of loss is a powerful thing, but it doesn't have to have power over you. Does that make any sense? To some extent its about realizing we can't control everything and it's not fair for us to expect ourselves too. All we can do is the best we can do. Along with saying a little prayer every now and then that it's much much later rather than sooner.

Geesh, kind of rambled here...don't know if I am actually helping. I just want you to know you are not alone.

Lori

On May 1, 2006

Purple cat and KS mom, I just cried for both you. I can only imagine.

Cindy, the way you phrased your post was fine, don't worry about it. Yes, "that thought" does go through my head. It seems to come and go. But it's not only about PA. His other conditions aren't generally fatal, but sometimes I worry that his epilepsy could cause a fall or drowning. Or that his impulsiveness, which is worse with the anti-seizure meds, could cause him to run out in front of a car (he has run into the street, even though he knows better--it's just a matter of control). So, yes, that thought does hang around more often than I would like. But in your case, there is a real reason for it to be in your mind, and as time goes by, I am sure that it will gradually go away, at least to the point it was 3 or 4 months ago.

On May 1, 2006

Cindy,

I think if we're honest with ourselves, we all live with "that thought" rumbling around in our minds and it comes closer to the surface during times of stress. I think what you have been through would qualify as one of those times. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] It's also natural that one loss would trigger fear of another. For example, after my dad passed, I became nearly obsessed with fear of losing my mom. If I called when she should have been home and she didn't answer the phone, I went into total panic mode. A normal reaction (OK, so maybe my total panic was a bit over the top, but since I'm such a worrier... I think it was normal for me).

I think that with time you'll get "that thought" under control again. And just maybe you have a little extra help from above in watching over Jesse as he's growing up, when you aren't there with him, KWIM?

Purple Cat and KSMom, I can't even begin to imagine your pain. It must take super-human strength to put one foot in front of another every day.

Amy

[This message has been edited by Going Nuts (edited May 01, 2006).]

On May 2, 2006

I just wanted to chime in with the others that you are not alone in having "that thought." I guess my triggers for it are after a reaction, situations where others don't "get it," or when I feel less in control of the surroundings. I am surprised at how debilitating it can be. Thank goodness that it only lasts a short time!

And yes, I have had the thought that DS may not have as long as a future as my others. Then I am reminded of my grandmother, who was severely allergic to a long list of things, lived to her 80's and died from unrelated causes. I attribute that to her diligence in protecting herself. I remember as a child seeing her have to give herself an epinepherine shot on more than one occasion. That was before the testing was as good as it is now. I also remember her being a very good advocate for herself, speaking about her allergies often. I guess now that I think about it, I can learn alot from her long life with food allergies, things I can teach my son. He is already becoming an advocate for himself! So, be encouraged! I do know someone who lived a long life with this!

So, yes, we have to be realistic in order to be diligent. It does get tiring emotionally to carry "that thought," even subconsciously, but we know that there are others like us who understand, even if it is only on here. It's good not to be alone!

------------------ Jamie - mom to: dd(13) - NKA; ds(10) - asthma, enviromental allergies; ds(5) - PA/TNA/EA/Soy; enviromental allergies, slight asthma?

On May 2, 2006

nothing but hugs...

Jason

------------------ [b]* Obsessed * [/b]

On May 2, 2006

Yes, I've had that thought. And others like it, even as recently as this morning in the shower. I thought about what it would be like to lose my DH. I think the trigger must have been that United 93 movie that just came out. I feel bad about this, but what I fear more than losing DH is my family losing me. DH relies on me to do all the research, most of the shopping, all the planning for activities and school and everything else to do with PA. He's been handling more of the actual encounters with school personnel and parents of DS' friends lately, but only after I've prepped him for it. I worry that DS would have serious reactions because DH doesn't know what I know, and I worry that he wouldn't feel the need to get up to speed after my demise.

I guess I feel reasonably confident that I can keep DS safe as long as I'm here, but I fear not being here for him. Is that egocentric of me? I honestly can't tell.

So here's what I thought of this morning: I should sit down with DH and discuss priorities if I were to die. First on the list would be to make sure that they have health insurance coverage. Right now, I'm the sole provider, and they'll need to make sure that DS is covered pronto. I have life insurance, so they would eventually have money. Then DH would have to come here to PA.com and get up to speed. The train of thought kind of wound down at that point, but you can see what was on my mind.

Cindy, thank you for sharing this. As you can see, you are far from alone in having these thoughts.

On May 3, 2006

Cindy: My thoughts are with you...

Donna

On May 3, 2006

"Fields Of Gold"

~Sting

You'll remember me when the west wind moves Upon the fields of barley You'll forget the sun in his jealous sky As we walk in the fields of gold

So she took her love For to gaze awhile Upon the fields of barley In his arms she fell as her hair came down Among the fields of gold

Will you stay with me, will you be my love Among the fields of barley We'll forget the sun in his jealous sky As we lie in the fields of gold

See the west wind move like a lover so Upon the fields of barley Feel her body rise when you kiss her mouth Among the fields of gold I never made promises lightly And there have been some that I've broken But I swear in the days still left We'll walk in the fields of gold We'll walk in the fields of gold

Many years have passed since those summer days Among the fields of barley See the children run as the sun goes down Among the fields of gold You'll remember me when the west wind moves Upon the fields of barley You can tell the sun in his jealous sky When we walked in the fields of gold When we walked in the fields of gold When we walked in the fields of gold

On May 3, 2006

Quote:

Originally posted by gvmom: [b]

and I would guess the degree to which it controls your life would be a better measure of rationality.

[/b]

Perfectly said, thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] "That thought" had been in the recesses of my brain (as it is in all of our's, I believe) and I do understand why it re-surfaced, which is okay.

But no, perfectly said.

I've been thinking about this more and I also recognize another *trigger* as when I'm sick with a really bad migraine. But only since Ron died for some reason. I almost feel on those days (I had a three day one last week) that I should phone the school and tell them to have Jesse sit at the "peanut free" table for that day just so that nothing can possibly happen. There is only one lad sitting there by himself now which I find rather sad. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

So, when I'm not feeling great, it's a *trigger* but then, when I'm really bad with a migraine, I don't let the kids go out to play in case there should be any type of accident (fall, broken bone, whatever) where I'd have to get them to the hospital and actually couldn't because I'm puking and carrying on.

"That thought" is further up front for me right now, but no, not controlling how we lead our lives in any way at all.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Quote:

Originally posted by LilMansMom: [b]Cindy, Then, again, later when I took out a life insurance policy on him when it never occurred to me that I needed one with my daughter. Kayde is the oldest and from the day she was born I have thought about her wedding, her babies, her life as an adult. But, then after the diagnosis of Manuel's FA, I realized those thoughts are always "IF's", not "WHEN's" with him. It

On May 3, 2006

becca, please let us know how things are going with your wee guy. My prayers and thoughts are with you.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Peg541, I remember a couple of years ago at least raising the question about whether when we looked at our PA child, if we saw "the label" on them somehow (I'll try to find the thread).

I guess it just becomes so much part and parcel of them/us/the family that it would only be natural to think of their allergy. I mean, I don't "look" at Jesse any differently but I see him strap on that Epi-belt every morning and it is different than his sister's morning routine.

I'm sorry, I forget, but did it scare you to have you not associate your son with PA?

Also, your son and his story, as posted by you here, really helps me keep "that thought" at bay.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Quote:

Originally posted by LuvMyKids: [b]

Sometimes I think she is safer because of the PA, people tend to watch her more including me.[/b]

LuvMyKids, wow! I am so happy, for you, that you feel that way. I have never felt that way - that Jess is safer because of his PA. I would love to feel the way you do. I think it's wonderful. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

TNA Mom, thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] I'm not clear if I'm handling anything admirably or not, but thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Quote:

Originally posted by barb1123: [b]

But this is the way it is. Unfortunately! I too have my moments of paralyzing fear. They may come over me for no reason whatsoever. I may just look at my son who is being good for the first time in a week (LOL) and shudder at his vulnerability and frankly my only thought is that I'd probably kill myself if I ever lost him.

I actually have worse thoughts that I am ashamed of. I have two sons, one PA, one not. And I am more afraid of losing my PA son than my other. Is it because my PA son is my first born? Is it because he's more vulnerable? Is it because my non-PA son is 3 and a willful, screaming monster most of the time? I don't know. I hate myself for thinking that. But then when my 3 year old swallowed a 50cent coin and almost choked to death I was begging, pleading, crying with the powers that be to save him and it hit home just how much I loved him.

Barb[/b]

barb1123, thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Please don't be ashamed by what you posted. I do worry more about losing Jesse than I do Ember (non-PA).

I have also very often questioned whether I am more lax discipline wise with Jesse just because of his PA and "that thought". I sit here and always have and analyze these things. Do I treat my PA child differently than my non-PA child - probably even asked the question here.

Yet, when I'm being rational (or whatever), it's my daughter that has had eye surgery. It's my daughter that has had stitches twice. It is my daughter that has broken a bone.

But no, don't be ashamed. I do often wonder the same thing about the way I treat my children.

For example, even in the morning when I walk them to school, I kiss them good-bye, tell them to have a good day and that I love them, but with Jesse, I always add "be safe". He knows and I know it means re his PA but even after I did it this very morning, I can't tell you if my daughter knows that. And how must she feel that I say that to her brother and not to her? Like I don't want her to "be safe" at school. I'll have to talk to her about it - incredible BAD MOMMY thoughts just came over me. Jesse and I understand what it means - I'm not sure Ember does. And he**, why not say it to both of them anyway? Regardless?

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Quote:

Originally posted by mommyofmatt: [b] I'm going to enjoy this feeling now...when he enters kindergarten, I'm sure I'll probably feel it more again. I think events, new life stages, different ages, can all trigger this feeling.

[/b]

mommyofmatt, excellent stuff! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] That's it - when things are changing; whatever they may be.

Jesse's 10 now and I can see this coming more to a head pretty soon - as he starts getting more independent of me and then when he goes to high school. So, the "trigger" for "that thought" will be there again.

Your post was of comfort to me. Thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

synthia, I'm glad you found that other thread I re-raised, although, as I said, your child didn't lie (and scream and carry on), but I hope it helped just to show that yes, some times our kids do bug up (and I think Jesse may have been your daughter's age or around that when he did and there was much discussion about age specific stuff).

Thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Quote:

Originally posted by PurpleCat: [b]Yes, I have "that thought". Then my daughter steps off the school bus and smiles and laughs, and "that thought" takes a step back to give me a chance to smile and laugh too![/b]

PurpleCat, just beautifully put - something I experience each day with my children. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

BIG HUGS}}}}}

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Quote:

Originally posted by Arlene: [b]I think the big thing for me is the control factor.

Its good that you are speaking to a proffesional about this and hopefully it wont be long before you can put those nasty thoughts away in a big box and lock it.[/b]

Arlene, yes, it is the control thing, isn't it? Things do get more fearful when they're not as controllable, especially with our PA children.

And I just loved that last paragraph of your post. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Quote:

Originally posted by stephi13339: [b] I mean when you think about it, we have to tell ourselves and everyone around us a dozen times a day that our kids could DIE all in the name of protection. Of course we're going to be affectd by that, we love our children immensely. These "thoughts" are just our way of handling and trying to cope. [/b]

stephi13339, wonderful thinking. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] It's almost like when I do speak about PA - it's rote now so when I say "life threatening" or even DIE, it doesn't really connect in my head, if that makes any sense. It doesn't make "that thought" come to the forefront for me. But I guess it certainly does keep it in my head.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Quote:

Originally posted by Jana R: [b]

My DS turns 18 next week - I often find myself wondering if it's possible for him to live to a ripe old age. He has multiple life threatening foos allergies and I don't know any adults who react to his long list of allergens. So I'm left wondering did they all die? I'd particularly like to know of adults living with life threatening milk and egg allergies since I was told when he was little he would outgrow these and he didn't. So yeah, I've been having these thoughts [b]a lot[/b] lately as well. Particularly after spending some time with Sabrina Shannon's mom, Sarah a couple of months ago. [/b]

Jana R., I'm sorry that you're having "that thought" now. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] Is there any other group where there are adult MA people posting? I know at least here we have a few PA adults and ones that grew up with PA.

Maybe by adulthood, the avoidance thing is just so heavily ingrained.....

BIG HUGS}}}}}

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Mookie, no you weren't being redundant. You said things differently but also clearly. I appreciate that.

Yes, Ron is my husband and my children's Father.

But no, I thought your post was important because you shared that you had "that thought" and how it was different than our children perhaps dying in other ways, and not redundant at all.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Quote:

Originally posted by Corvallis Mom: [b]I know that this kind of "knowing" has made DD's FA much more difficult for me to handle than for DH. He rationally knows what could happen, but he doesn't really know emotionally-- he's never buried a member of his immediate family. So it doesn't periodically reach out from the recesses of his brain and slap him silly the way it does me. Leaves me in horror, really.

[/b]

Corvallis Mom, thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] See, the part above I've quoted - I can't ask Ron that bit now. But it would raise an interesting question IMPHO. Now, Ron had buried more close people than I had, and I know somewhere through the years, we must have had a discussion about "that thought" but I really don't know.

I do think it raises a very interesting question, separate from this discussion actually. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

KS Mom, welcome, and very simply, big hugs. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Munchkin's Mom, I thought your post was incredible and it made perfect sense to me. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Quote:

Originally posted by Jimmy's mom: [B]So, yes, that thought does hang around more often than I would like. /B]

Jimmy's Mom, I'm sorry. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] Do you have ways that you try to banish the thought from your brain or it's just not something that will leave?

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Quote:

Originally posted by Going Nuts: [b]

And just maybe you have a little extra help from above in watching over Jesse as he's growing up, when you aren't there with him, KWIM?

[This message has been edited by Going Nuts (edited May 01, 2006).][/b]

That's what I'm hoping, Going Nuts. That Ron is a guardian angel for both kids now. And you know what? If it turns out that he doesn't do a very good job of it, I'm going to be really angry with him! But no, he should be cool up there [img]http://uumor.pair.com/nutalle2/peanutallergy/cool.gif[/img]

Honestly though, or seriously though, when I was sobbing that day, I did pray to Ron that he watch over Jess re his PA.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Quote:

Originally posted by CDMom: [b]It does get tiring emotionally to carry "that thought," even subconsciously, but we know that there are others like us who understand, even if it is only on here. It's good not to be alone!

[/b]

CDMom, what a wonderful story about your Grandmother, thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

I think that's what bugs me sometimes about other people (if I just feel like being bugged by people for some reason). How to explain? Okay. That my SIL or any # of other parents NEVER has "that thought" the way we do. Oh, of course, they may worry about their children dying in the other scenarios even posted in this thread, but they don't have to worry about it because of a bloody peanut.

Then I think, it's not only an "irk" thing for me but I just wish sometimes someone would acknowledge the incredible stress that it *can* be. I have never had that acknowledgement from anyone in *real* life.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Quote:

Originally posted by jtolpin: [b]nothing but hugs...

Jason

[/b]

Jason, thank-you, you're a sweetie. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] Now, to totally back-hand that compliment, I am going to ask if it was your way of avoiding the question about "that thought"? I wonder if it would be even harder for you, KWIM?

So, big hugs right back atcha. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

And thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

iansmom, it's funny. I had asked Ron what he would do if I died re Jesse's PA. Now, he had the same comfort zone as I did, but as is I think fairly typical, I was the one here (although Ron was a member). This discussion was not that long ago (maybe 1-1/2 years ago). Anyway. He said, Cindy, I have PA.com and if you could give me the e-mail address of one member to contact off-the-board, I think I'll be okay.

Perhaps that would work for your DH or is there more?

And thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

notnutty, thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

See, bottom line is, even though I posted this because of what I'm going through right now (and will be for awhile I suspect, which is okay - part of life's journey), I don't want this thread to just be about ME.

Can we use it to discuss the triggers for "that thought" and how we effectively keep it in the recesses of our minds most of the time?

I would really like that.

I appreciate each and every word that was posted to me in this thread.

Let's make it about EVERYONE now. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Especially after some mad woman couldn't respond with one or two posts but had to respond individually.... [img]http://uumor.pair.com/nutalle2/peanutallergy/rolleyes.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

On May 3, 2006

Hang in there CSC,and Thank you for the call [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------ Love this site Synthia

On May 3, 2006

Quote:

Originally posted by csc: [b] Jason, thank-you, you're a sweetie. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] Now, to totally back-hand that compliment, I am going to ask if it was your way of avoiding the question about "that thought"? I wonder if it would be even harder for you, KWIM?[/b]

You know me enough.. I don't think (or talk) about mortality very much. As you know what words I avoid.

That, I'm afraid, is NOT in my comfort zone. It's just 'understood' and NEVER discussed.

Jason

------------------ [b]* Obsessed * [/b]

On May 3, 2006

That thought, for me, comes out of nowhere sometimes... it doesn't take something PA related to make me go there.

Reminders of people I have lost will do it, and when you have been through that with someone close, you know how those things can really be bizarre and come out of nowhere-- for example, DD recently read "The Hobbit" for the first time, and it made me think of my Dad, which made me so sad he wasn't here to enjoy that moment with us... and that made me have "the thought." [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] As do certain other things that those people in my life are associated with in my brain.

My method for dealing with the PA-triggered ones is different. PA scares nake me retreat to my "neutral corner" and find something to do with my child that is very low-risk that is also [i]unmodified[/i]. KWIM? So I don't count cooking with her, because of multiple LTFA, this may be safe, but it is never going to be "normal." Mini-golf. Looking for a new book on Amazon. Playing with the dog or learning a new board game, working together on a jigsaw puzzle. Painting a picture together.

These are all things where we can absolutely forget about her FA, because it truly doesn't exist in those moments. [i]That [/i] is how I make those thoughts go bck where they belong-- in the background.

With the more personal, out-of-nowhere triggers that are there because of the death of loved ones, I try to turn it into a [i]positive memory of the person[/i] instead of a reminder of my daughter's extra-mortal status. So in the case of "The Hobbit," while it was bittersweet for me, I used it as an opportunity to share something meaningful and wonderful that I recall about my father (who died before my daughter was born). This is a way for my daughter to know how much I value the memory of those people in my life. And I way for me to share the wonderful quirky things about them that I love-- even though she will never know them.

I see this as "putting that thought in its place" in a way, because the thought arises out of my memory of the other person-- not primarily as a thought about my daughter's vulnerability.

Hope this helps.

Jason, I understand how you feel. This is precisely how DH deals with this issue. Of course he understands. No denial there, but that doesn't mean it helps him personally to drag these thoughts out of the mental closet and shake 'em out good and hard, either. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] To each his own, right? We talk about it sometimes, privately, but this is very limited as his mental threshold for overload here is very low.

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