Posted on: Fri, 02/09/2007 - 2:47pm
Love my babies's picture
Joined: 03/18/2005 - 09:00

My daughter and I had a little scare today, and we didn't know if the welt on her lip was a reaction or if she bit her lip. She got upset when I questioned her day because she opened a "may contain" but threw it away without eating it. When I asked who she sat by and what she ate she got scared and said "do I have to have a shot?". I told her that if she did need a shot it would be because we needed to save her life and keep her here with her family and that even though shots do hurt for a minute it's important for her life. She then burst into tears and cried why do I have to be allergic to anything? As a mom I comforted her and told her what she needed to hear to get past the moment. That being said, who gets me past this moment? While I sit here crying worrying about this little girl every second of the day and just like her wondering WHY WHY WHY!!!!! With everything in this scary world to deal with for our children, why is this put on us to deal with. There are honestly days where I don't think I can take it anymore, the worry becomes overwhelming. I hate that my little girl has to deal with this EVERY DAY, and she is starting to be affected by it. I am sorry to pour my heart out and I could go on but I won't I'm sure you understand, I am just so very sad about this whole thing, not for me but for her and the sheltered life she will live.

Posted on: Fri, 02/09/2007 - 2:59pm
KateDe's picture
Joined: 09/20/2006 - 09:00

Quote:With everything in this scary world to deal with for our children, why is this put on us to deal with.
I have been thinking that exact same thing a lot lately. No answer. I understand how you feel. All I can say is when I feel that way I focus on all that I have. My son may be allergic to something but he's not mentally or physically handicapped. He doesn't have childhood cancer. Overall things are great.
I am not downplaying how you feel. Again, I understand. I'm just telling you what works for me. Focus on the positive things and the negative ones don't seem that bad.
Take my advice for what it's worth. I don't know. I could have done the reverse of picking you up and pissed you off. That's the hard things about internet boards. You never know how the person you respond to reads your post.
Hang in there.

Posted on: Fri, 02/09/2007 - 3:54pm
gw_mom3's picture
Joined: 02/14/2000 - 09:00

{{HUGS}} I feel that way ALL the time. My heart breaks for my dd who must always be asking "WHY ME??". I usually try to remember that it could be a LOT worse. A close friend of mine lost her child to cancer a couple of years ago. It was so hard and I worry all the time that something horrible like that will happen to one of our kids. But yeah, I worry every day that dd will have a bad reaction. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] This allergy pretty much consumes us, doesn't it.

Posted on: Fri, 02/09/2007 - 11:38pm
chanda4's picture
Joined: 12/14/2006 - 09:00

I have to say I also feel your pain, I do. It comes and goes though...maybe, for whatever reason, I can take the *hate* for food allergies away and replace with *we can do this*. I know there are millions of people that have it way worse then I do, that doesn't belittle what I deal with, but it puts it into perspective. We often are at Children's Hospital(for the allergist and GI), so I can see first hand(even though I don't know these families) but their heartache is levels above mine.
One thing we need to remember, these kids CAN live normal lives, really. Please don't think we have to shelter them, we take precaustions, but in all reality they can run, play, laugh, learn, grow...they can!!! I have a cousin in Iowa, he developed Polio many years ago, I remind myself this could be so much worse. He lives in a home, in a wheelchair, he can't communicate...I am very sad for him.
My son is doing great, he goes to school, he has tons of friends, he runs around outside all summer, he plays football, he has sword fights...he REALLY is doing well, I have no regreats here.
I am not dismissing your feelings by anymeans, I am just trying to redirect them, you really have to stay positive or this will beat you down, it will. All the what-ifs and the worries, that is the hardest part of food allergies.
I know your daughters reaction scared you, but nothing happend, right(unless I am wrong, correct me)...focus on the good side of it, for a moment. she opened a can she shouldn't have, btu threw it away(great job!!) she got a bump on her lip....but nothing more, right?? Last night my youngest(allergic to milk and eggs) was cryig and reaching her hand in her mouth...so for a breif moment I freaked, was this a reaction, was her mouth burning, squeezing..WHAT???!!!! Mayeb she was just teething, I have to refocus off the scary(all the time) this is life, they are kids, more then just reactions are going to happen...I remind myself that over and over!!!
Take a deep breath, hug your child very hard...but then let her go, let her be a kid, enjoy the *good* in life and don't let the *bad* be the reason for living.....these are all great kids, I see that everyday here. What helps me, is the great adults on this site, they are here, they are happy and they are doing great...just like our kids one day!!!
Deep breath, chin up and a million HUGS to you...we CAN do this!!!!
Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig)
Savannah-1 (milk and egg)

Posted on: Sat, 02/10/2007 - 12:21am
momll70's picture
Joined: 09/26/2006 - 09:00

Sending you (((hugs))). Sometimes it does get overwhelming and I have felt that way too. I know someone with a very sick child that may not live very long and is constantly at the doctors and it makes me think that things could be worse. It drives me nuts that for our children it is something that can be controlled if we are safe and some people can be careless and not understand and hurt our children and then there are other children with diseases which cannot be controlled and no matter what their parents do they are not getting better. Sometimes I feel that where-ever I turn I'm dealing with an allergy issue either for me or my son and I just want to disapear into a different world where things like this do not exist. But sometimes I wonder why me and I think the answer is because God knows I will take care of my son. Sometimes that keeps me going and although things can get very scary and bad I do think about the people who's children can't run and play everyday like our children can. My friend's son was running around and now is in a wheelchair. When I think about my bad moments I think about her and what she is going through. Hang in there. I fear my son will do the same one day too. I'm glad your daughter is o.k. One thing I do is I tell God I leave this in your hands because I cannot do everything all by myself. I do the best I can. Valentine's day is coming up and I know my son is going to get treats and I hope he doesn't eat anything until he lets me see it first.

Posted on: Sat, 02/10/2007 - 12:41am
JennB's picture
Joined: 01/31/2007 - 09:00

Dealing with a allergy on a day to day basis is stressful. I have a older child with no allergies so now i am learning how to handle sistuations with my PA (4). It can be alot to handle...

Posted on: Sat, 02/10/2007 - 2:42am
anonymous's picture
Joined: 05/28/2009 - 16:42

Ryan has never questioned "Why" so I'm very lucky in that respect. But I think it's because I've always added that everybody has *something*. Some may be diabetics, some may have cerebral palsy, epilepsy, emotional, neurological, speech issues, etc. There's so many things that other kids have to deal with too.
My answer is basically "Because." Because everyone has something to deal with. Mom, dads, kids, friends--there IS always something, and our kids have to remember that.
On the few occasions that Ryan has gotten down about things, he is reminded by everything he does have. It is a lot! And while there have downsides to having a peanut allergy, there have been many positive things about it too.

Posted on: Sat, 02/10/2007 - 3:12am
krc's picture
Joined: 01/16/2007 - 09:00

First, sending hugs your way...somedays can feel so overwhelming.
My pa dd is now 10. I think she had the hardest time dealing w/ it around 7 and 8. She used to always ask me "Why did God give me asthma and allergies". Hard question to answer huh?
I would always tell her how lucky we actually are: she can walk, see, play w/ her friends. Things could be much worse! This, of course, never made her feel any better. But it does help me.
I think at some point we all look for the answer to WHY? Living w/ this allergy day after day can be so, so stressful.
Sometimes I think of my friends and family w/ completely healthy children and think "Wow- if they just had a clue how stressful it is to to send my child to school, to a friends, the grocery store! or even go to their house on holidays!" I wish I could just send my child out into the world and worry about the "normal" things. But of course that isn't the way it is.
I'm sorry you are going through this. I hope your dd is feeling ok now.
Some days are worse than others. Some days I have to reel myself back in. I can lose sight of what is important and start feeling sorry for us, for her. It starts to feel like too much. Then I see her smile, laugh, play w/ her friends or ever argue w/ her sisters and I think "ok, we can do this"
And I never stop hoping for a cure.

Posted on: Sat, 02/10/2007 - 5:08am
Corvallis Mom's picture
Joined: 05/22/2001 - 09:00

Without her MFA, my daughter's life would be SOOOOOOO radically different.
Sometimes she feels angry about those differences... (this breaks my heart too)
BUT!!! It is critical to remember that this has given us some extremely precious gifts. We value the lives of those we love now. In a way that simply would never have been, otherwise. If I had not had to face my daughter's fragility and mortality, would I treasure her the way I do? Probably not.
Every day with her (and for her-- with us as a family) is a precious gift. Even when she is driving us batty, she is [i]here[/i] and [i][b]so are we.[/b][/i] Totally in the moment.
We spend the kind of simple, quality time together as a family that my friends and neighbors can only envy. Only other 'special' families know that secret... it starts out that way because it has to be that way (you can't turn over care to anyone else) but in the end, you wouldn't go back. Not even for 'alone time' or 'date night.'
When my daughter was diagnosed, she was 11 months old and spent 70 hours a week in the care of others. Even when we were home, we weren't "there"-- we were frantically grading, or discussing department politics and committee work... preparing for conferences. Her diagnosis came as an epiphany. Truly. We didn't like what was illuminated. What a wonderful gift.
The dividends that moment has paid-- my goodness. Where to start! DD is homeschooled, and good thing. We would have otherwise sent her off to school and just shrugged when her boredom led to discipline problems. Her wings would have been clipped without us ever even knowing, and we wouldn't 'know' her the way we do. I was a good parent, I think... I just wasn't "all in" the way I am now.
Yes-- I feel sad and embittered sometimes that I 'didn't have a choice.' But the fact is, I wouldn't have made this choice-- I would never have known what really matters so much to me. I can see how much it matters to her, as well. She is perplexed by friends whose parents [i]don't[/i] spend this kind of time with them... she secretly wonders if they just don't 'like' their kids as much as we like her, I think. She knows there is NOTHING we wouldn't do for her-- we show it all the time.

Posted on: Sat, 02/10/2007 - 8:36am
JULES63's picture
Joined: 01/06/2007 - 09:00

I am a strong believer in the fact that everything in life happens for a reason. At times it doesnt make sense but later it all falls into place. Probably a load of rubbish, but it keeps me going.

Posted on: Sat, 02/10/2007 - 10:08am
Mrsdocrse's picture
Joined: 01/16/2007 - 09:00

I truely know how you feel... I am strggling with it in the last few days.. most days I feel like " i can handle this" we will be ok.. I am determinded that he will do all the stuff other kids do... I am curretnly looking for a summer day camp for him I have found peanut free one... it is a little out of the way and is is very $$$$. But I feel like I don't have a choice.. I resent the fact that I can't just pick a camp that his " friends" might go too.... and leave it at that... Ugh it does get over whelming some days... ((hugs)))

Posted on: Sat, 02/10/2007 - 10:54am
Love my babies's picture
Joined: 03/18/2005 - 09:00

Thank you for the lift of spirits, I feel bad dumping on my pa life and am just having one of those moments. I think it does get harder starting now because she is slowly getting out of my reach...asking for sleep overs, eating meals away from me, camps, clubs and after school activities. She is learning independence and I have to deal with that. Thank you to everyone, I do need to look at the positive things in our life, which may not mean much to my 6 year old, but is precious. I guess if we didn't have f.a. we would all find something to worry about. Thank you for listening.

Posted on: Sat, 02/10/2007 - 11:03pm
BS312's picture
Joined: 09/05/2001 - 09:00

Quoting: "I think it does get harder starting now because she is slowly getting out of my reach...asking for sleep overs, eating meals away from me, camps, clubs and after school activities. She is learning independence and I have to deal with that."
So sorry you're going through a difficult time with the allergy. Your DD is six. Our DD had no independence from us until she was eight...and then very limited. Our children want to be independent and "normal", and we try to allow them to be, but we have to live with this too. If we have a decision regarding allowing DD to do an activity, we have to consider her wishes, her safety, and our comfort level. If a certain choice makes us too anxious, we do not let her do it or we go with her. It is not selfish to make decisions based on your peace of mind. Our family is happier when we parents are worrying less.

Posted on: Sun, 02/11/2007 - 2:13am
Corvallis Mom's picture
Joined: 05/22/2001 - 09:00

I agree with the previous two posts...
DD is nearly 8 now, and she has NEVER been to a sleepover, birthday party or even an athletic event without a parent in attendance. With her MFA, I can't see it happening any time in the near future, either.
We have talked to her about this issue, though-- we KNOW she wants independence. Needs it. So we allow her more "breathing room" in terms of her privacy. Her room is her sanctuary, and in other places which are (reasonably) safe w/r to FA, she can roam without me hovering right over her the way I did when she was 2 or 3. So I guess what I am saying is that there are ways to pull back enough to give them breathing room (when someone asks them a question about their allergies, let your child answer it, for example...let your child begin making his/her own snacks in your home) without making yourself crazy with worry.
It [i]is[/i] a balancing act, but if it doesn't feel safe to you as a parent, it probably isn't. Right? [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] They just have to understand that with freedom comes additional responsibility. Every kid is ready for that at a different age. Some kids aren't ready to drive a motor vehicle until they are 20 or so--- but some of [i]those[/i] kids [i]ask[/i] a lot younger than that!! It is the same with other freedoms-- many kids [i]want[/i] those things before they are truly ready for them.
You might be surprised by what you find out if you talk to your child about what she really thinks. It may turn out that, sure, she likes the [i]idea[/i] of doing all the things that friends are doing, but that the reality feels too scary for [i]her[/i] as well. That's what we found. It was a good conversation to have for another reason, too. We were able to reassure her that her desires are very important to us. She is secure in the knowledge that if she comes to us with something [i]truly important to her[/i]-- we may say "No, [i]that[/i] isn't going to be safe." But we [i]will[/i] find a way to make it happen-- it may not be the same way her friends do it, but if it matters to her, it [i]will[/i] happen.
Having her know that has alleviated [i]SO[/i] much of this kind of stress-- she doesn't go on and on about all kinds of things that aren't really that important to her. We know that when she wishes for something, she means it. And she knows we will help her find a way. (If one exists.)
Until we began living within a comfort zone that we could all stand, I was a [i]terrible[/i] person-- and not a very good parent, either, incidentally... I mean, sure, it changes with time, but I always know when I've ventured too far out of it. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Good communication is the key.
[This message has been edited by Corvallis Mom (edited February 11, 2007).]

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