got the blues today.....

Posted on: Mon, 06/05/2006 - 12:29am
Lori Anne's picture
Joined: 07/13/2005 - 09:00

I was feeling terrific for a while...504 is underway and I feel we are preparing for kindergarten. I also was happy because we made it to the one year mark. It's been over a year since dd's diagnosis and dd has had no major reactions. She has had contact reactions that involve hives and sneezing, but no ingestion reactions at all.

Then this week came. It's dd's last week of preschool. I'm so sad. They have been so good about her allergies and I just felt like she is so safe there. They included us in so many decisions. I'll miss them!

I can't say the same for public school. [img][/img] They didn't want us to have a 504. They argue about what will and won't be done. Preschool didn't argue about a thing. You needed something, you got it. I just don't get why the public school (with more staff and resources) would make things so difficult.

I also feel like we're losing control sending her there. The doctor's response seemed to agree with that notion. He changed dd's plan of action to be epi first--not benadryl first and wait. I agree with this wholeheartedly, but he said those words, "Because you'll have less control there and we don't want to leave things to chance." I don't even like to think about it. I feel like I've been punched in the gut!

Then I hadn't even thought of religious ed. I just called that office today and I'm waiting for a call back tomorrow to see about how we'll deal with the allergy and epipen situation. I may have to stay in the building for her classes. I don't know.

I guess I was feeling so comfie with status quo. We found a way that worked for us and everything was going fine. Now there are all these changes and I guess I feel overwhelmed again. Change is always hard, but when it involves these allergies, it is the toughest thing ever to deal with.

Guess I'm just feeling a little down today.

Posted on: Mon, 06/05/2006 - 1:42am
gvmom's picture
Joined: 08/24/2005 - 09:00

[b]I guess I was feeling so comfie with status quo. We found a way that worked for us and everything was going fine. Now there are all these changes and I guess I feel overwhelmed again. Change is always hard, but when it involves these allergies, it is the toughest thing ever to deal with.
Guess I'm just feeling a little down today.[/b]
I'm sorry you are feeling down today. I think it is understandable. Dealing with public schools can do that for you. I have to say that something that you said about change, with respect to allergies, struck me. I never really thought about things just in that way. We all go through so many changes, adjustments, tweaking -- in life and with the food allergies. But especially with food allergies, even the fine tuning can be huge. There is so much that we all deal with, but I wonder how many of us realize how much we really do, considering what the smallest of details can mean for our children? And yes, when dealing with schools, we have to think of them all.
Well, anyway -- my rambling aside -- I'll send you a and maybe you can get a real one from your DD. At preschool age, those can be great hugs, and maybe she'll throw in a sticky kiss on your cheek.

Posted on: Mon, 06/05/2006 - 2:18am
luvmyboys's picture
Joined: 05/25/2006 - 09:00

I think every change will bring stress for us with our PA kids (it does with our nonPA kids as well just not to the same degree!) DS is starting kindergarten as well and we have to deal with religious ed as well. At 3yrs we sat outside his CCD class every week very stressed because they would not make accommodations and the curriculum was practically based around food! LOL! Now we're wiser. We would never endure that attitude again.
We just moved so we found a church that offers a homeschooling program which is still regimented and requires a once a month family meeting at the church..I am very excited and am hopeful this church will work for us! I would love to teach his class but with 2 younger kids and dh traveling it would be too much stress juggling childcare. And yes I would love for my 3 yr old (nonPA so far) to attend their Monetesorri style religion class once a week but that seems to not be the best thing for our family right now because of PA as well. I just don't have the energy to work on accommodations for a new public school, new preschool and new church all at once.
I wish you the best of luck. It helps me when I get frustrated to be thankful that God has blessed me with 3 healthy children and that we are so fortunate to live in this country with good healthcare, enough to eat and countless other blessings.

Posted on: Mon, 06/05/2006 - 4:30am
Lori Anne's picture
Joined: 07/13/2005 - 09:00

gvmom: Thanks for the hug and the support.
Luvmyboys: Thanks. I appreciate the advice.
Please know I'm not usually a downer. I was in college and I've tried to move past that. My husband always comments about how I find that silver lining about almost everything these days. I try hard to look at the positives and I do appreciate the things I do have in life.
I'm not trying to whine. Just having one of those tough days. I felt like I went through the steps most people say you go through. After a year, I thought, O.K. so I have a year's experience now. Things should be getting better. And they were. It's just now that things are changing again, my world has been turned upside down again. For all I know, things may be even better in the future. I don't know.
I used to say that change was hard. My uncle explained to me that it's not necessarily change that people have a problem with. He said it's the fear of the unknown. How right he is.
Once things become familiar again, we'll be O.K. For now, I'm taking things day by day with lots of hugs from dd [img][/img]

Posted on: Mon, 06/05/2006 - 5:02am
luvmyboys's picture
Joined: 05/25/2006 - 09:00

I have me bad days and my sad days with PA too. I think it's totally normal. It's OK to be sad and OK to come here and be listened to...because not many people can understand. Luvmyboys

Posted on: Mon, 06/05/2006 - 5:16am
Lori Anne's picture
Joined: 07/13/2005 - 09:00

Exactly. And thanks for listening and being there for me!

Posted on: Mon, 06/05/2006 - 5:20am
gvmom's picture
Joined: 08/24/2005 - 09:00

My DS is 6 1/2, and we found out at 11 months that he was PA/TNA. I still have many of those days when I feel down. Sometimes this allergy seems like nothing compared to some of the other things people have on their plates, but the most enormous thing compared to others. Frankly, given how I grew up, this FA thing is a huge thing to manage. And I think that contributes to waxing and waning (and whining [img][/img]). Many times I feel like I've got things set, under control (as much as one can), and then one seemingly small thing will happen (like some numbskull at the school doing or saying something stupid) and you just want to throw in the towel. I think it is the nature of managing a major health issue -- some days are good, some are bad, there can be spans of status quo and then suddenly a period of changes. And through it all, no matter how long you have been managing it, you can still be surprised, affected, saddened, elated, angered, frustrated, calm, stressed, comforted, etc., along the way -- and you can't predict when or how, or by who or with what, but it is part of the journey.

Posted on: Mon, 06/05/2006 - 9:47am
Lori Anne's picture
Joined: 07/13/2005 - 09:00

So life won't just stand still for me? [img][/img]
It's nice to have people to talk to about the tough times and to share the good times with too. We'll be O.K.

Posted on: Mon, 06/05/2006 - 10:34pm
mommyofmatt's picture
Joined: 03/12/2004 - 09:00

Lori Anne,
I could have written your post, word for word on Friday. I was feeling the exact same way! DH came home, I started crying, I was sad this great perfectly sheltered year is over. DS is going to the same school, but next year, they do a number of "field trips" to the big school...which isn't peanut free. So, we're working out that stuff now, and I'm starting to worry.
Couple that with some not so promising things I've heard about K-6 schools in my town and my head was whirling. And how I was told by my allergist that noone in my district has a 504. OH JOY! Trailblazer here I come.
It's been 4 days since my little breakdown, and I'm back in tackle it mode. I'm a firm believer that little breakdowns are good, spurs you on to the next challenge [img][/img]
And you're right gvmom, there's always another challenge, and the constant change and tweaking can be exhausting.
It was wild thought LoriAnne, how much I could have written your post word for word. Hopefully that's a comfort to you...Take care, Meg

Posted on: Tue, 06/06/2006 - 4:17am
Lori Anne's picture
Joined: 07/13/2005 - 09:00

Thanks! It is a comfort.
We were told by dd's allergist that he hasn't written 504's for peanut allergies too. We were also told by the district that we would be one of the only ones with a 504 due to food allergies, so I know where you're coming from with that too! I take comfort in the fact that we got past the first steps...the school agrees that she is eligible. I know you'll be able to do it too.
I'm doing a bit better today, but I know Thursday will be the worst. Thursday is her last day and we'll be giving the teachers their gifts and the poem I wrote.
Dd is having a tough time with the change too. I'm not letting it show that it bothers me in front of her. She's just getting sad because they gave her back all of the pictures and work she had done. They gave back her safe snacks too. So she knows it's all ending. I just keep talking about all the fun stuff facing us this summer so I can pep her up a bit.
We'll all be O.K., but it is a very sad time!

Posted on: Fri, 06/16/2006 - 12:23pm
LDR's picture
Joined: 09/28/2001 - 09:00

I just want to add that I am feeling the same way, and I'm happy to say that this is the third time. Same kid, different schools. Paranoid and terrified at the beginning of each school year, only to find wonderful teachers who genuinely care about children and are open to learning about how to deal with life threatening allergies. I'm sad(and scared)about moving on too, but keep reminding myself of how things have worked out year after year, and hopefully you'll be thinking the same next year at this time.


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