The Little Things That Get You Thinking

So today, I was reading a friends Facebook status and it was about her child's school having some pretty severe dietary guidelines for their lunches. Now, this was not in relation to food allergies, but more of a Food Revolution gone too far type of thing. The thing that most interested me were the comments to this. Not all of the comments as a lot were just about their child being picky and starving throughout the day. There was, however, a comment about a parent being thankful her child's school was not a peanut free school as her son LIVES on PB&J. So, this gets me thinking that Liv's school is not peanut free either and how many other parents just pack up multiple PB&Js for their children? I don't know how I feel about somebody being thankful for a food allergy family's misfortune. I don't want you to take that statement too far though. I don't believe peanut free solves much of anything because not all kids are just allergic to peanuts and if we're going to make a school peanut free, then why not milk free, then egg free, then wheat/gluten free, then soy free or corn free. You see where I'm going with this, peanut free is not the end all be all solution for us. At ANY rate, I was thinking...just HOW many peanut products are floating around these non peanut free schools and HOW would this parent or others like her react IF their school, or heck even just their classroom were to go peanut free?

The next comment read something to the effect that as a parent they should be able to choose whatever food they choose for their child and that they do not need a school system telling them what their child "will and will not eat." So, as a FA mother, I try not to read between the lines of this statement (after all, there might not be anything BETWEEN them). I would hope, that if it came down to it, and her child had a FA child in their classroom that she would react differently. What if she wouldn't though? What if she still wanted to send her choice of peanut/tree nut or egg filled delights for her child? In MY case, Liv's 504 and Civil Rights protect her from this kind of act, but what if? What if a parent of Liv's classmates reacts this way? I like to think that I'm a "big picture" kind of person and realize that my child's restrictions are infringing on the choices of others, but come on...my child's life vs your "choice"? I'm just not sure how I would react to this if approached with it.

All of this said, I have no real conclusion to this post. I'm not sure how I feel about a boat load of peanut or any other toxic foods (they ARE toxic to my child, so that is what I call them) floating around outside of my daughter's safe little bubble that is her Kindergarten room (bathroom is even in the classroom). I know they are floating around in her world outside of school, but I can control and contain that world any way I so choose for her. I. AM. A. CONTROL. FREAK. I don't know how I feel about that parent that will (eventually I will run into at least one) get that "why-does-my-child-have-to-suffer-because-of-your-kids-allergy" mentality, but I will say that my perseverance knows no bounds and my heart is my children. I will say that when it comes to the battle of wills over a child missing out on some probably not-healthy-at-all-treats, I will invite them into my world. I will show them the pictures of my baby during a reaction, I will show them her countless pages of hospital records, I will show them whatever necessary to see that my child DYING trumps their child missing out. I think this safely concludes my rant today, don't you?

*I guess I was in a ranty (YES, I use the word "ranty" even though it's NOT a word, and I love it) kind of mood. Sometimes it's hard living in our world, and sometimes I don't have all the strength it takes to always be tactful. I won't apologize for that, but I will thank you for bearing with me.*

Retractions, Second Guessing and Right Decisions...

There are announcements and then there are ANNOUNCEMENTS. This will be an ANNOUNCEMENT.

Last week was registration time for Tai for school. I arrived and grabbed his folder which also had Liv's name on it, as she was all set to attend this school before the summer began. I filled out all of the necessary paper work and spoke with the principal about Liv not attending the school. This is where things get tricky. He was upset, not angry, but genuinely upset and told me he knows it was ultimately my choice, not his. He told me that whatever accommodations were needed, surely they could meet them. I explained I that my ex-husband and myself had made our decision. He accepted this and looked completely defeated. Good. Except somewhere within, my heart was a bit saddened by this. It may have been just a mixture of being around all the kids excited for school starting, all the staff talking to me and asking about the kids...I'm not sure exactly what IT was, but I started second guessing decisions made. Decisions I was previously content with. At any rate, I continued to just register Tai. I stopped at the nurses desk to give her Tai's emergency card. She is also a friend as her son is in scouts with my son. The nurse asked about Liv and when I told her our decision, she too looked defeated. I could see on the faces of the entire staff that they had big plans for Liv, plans that had apparently changed since I last spoke to any of them.

Finally, as I was leaving, I turned right back around and asked about half-day classes. The admission secretary told me that mornings were full and if enrolled, Liv would have to attend PM classes. Well, that was going to be it for me at that point. Liv would be in more danger going to a PM class than being at the school for the entire day. This is because there is no knowledge of what kids ate before coming to school, one touch from a child with mayo, egg or peanut butter and Liv could be on her way to the ER. The good thing about the AM class is breakfast. I don't know about you, but I don't know many kids that eat eggs for breakfast before school. It can happen, but it's less likely than a PB&J, or food containing mayo. So, in my head, I figured the second guessing was all for not.

All of this was not settling with me just yet. I poked my head into the Principal's office and inquired about the accommodations they could make. He told me whatever was needed, they would do. I told him that I may consider half-day class. This is where a turn of events came...a big turn. He then asked if I would be interested in am or pm class. I explained the am class being full and that I was only exploring the option as I was not sure of the pm class. He verified that this was our "home" school and explained that if I wanted her in the am class, she would be in the am class, period. What?! Was I imagining this all, or was he completely ready to do whatever necessary to have my child attend this school?! Still not too sure on my feet about any of this (WHAT am I doing?! We just got this all figured out!!), I set up the 504 meeting with him for last Friday.

I discussed this with some friends and we are all in agreement that something came down the line. Don't forget that I had been in contact with the office of Civil Rights. They had everything on record and a complaint ready to file. I definitely believe this changed the course of things for us. Liv's father and I discussed this at length the next day and came to the conclusion that while our daughter is "different", she deserves the chance at some normalcy. As long as the 504 meeting went smoothly and every accommodation I felt necessary was put into it, Liv was going to go to SCHOOL!

504 MEETING:

Wow, never underestimate the people who will be working, hands-on with your child. I first attended a meeting in the morning with the district nurse, she was unable to make the actual 504 meeting. She was simply wonderful and knew a lot about food allergies and Anaphylaxis, bonus! It was a lengthy meeting and I feel, a successful meeting.

ACTUAL 504 Meeting:

I walked into a conference room, and at first felt completely overwhelmed and intimidated. There sat SEVEN pairs of eyes staring at me. The meeting consisted of the principal, assistant principal, Liv's teacher and her assistant, the school nurse, psychologist and the PERA. Mr. Principal (we'll just call him that) opened the meeting by handing out the drafted 504. As we began talking, six of those pairs of eyes scoured the drafted 504 and proceeded to TEAR. IT. APART. You could see immediately how disappointed THEY were with it and brought up each and every one of my own concerns, without me ever having to say them myself. Seriously? Did this just happen?! These women (six of them were women) were on Liv's side, they truly were. They played devil's advocate in every scenario they could think of, and they thought of a lot! By the end of the meeting, Mr. Principal was stunned. He had no idea that I was in fact, not crazy and made no effort to hide that fact. I'm perfectly okay with that. I know my daughter has a team at school that is there for her, thinking of her and worried for her. I know my daughter is in as safe hands as I can possibly put her in, other than my own.

Sometimes (Read: a LOT of times) we as parent second guess ourselves. I'm okay with this because I think it means we are examining all options and only doing our best to give our children the best we can. With THAT, I have to retract my previous announcement of homeschooling and I'm excited to say that Liv's father and myself have decided after a successful 504 meeting that our little girl will be starting school next week.

**Homeschooling** is still an option for us, if at any point in time we become uncomfortable with Liv going to school.

Blessings

Okay, these past couple weeks have proven to be extremely busy for my family. First off, I'd like to announce that I was chosen to be an Enjoyable for Enjoy Life foods! What does this mean? It means that I am a brand ambassador for them here locally. It means that I am able to attend events as an ambassador and share the Enjoy Life experience with so many people. This is a volunteer position, but I believe it pays more than I could ever imagine.

With that, I will roll on with the next announcement, yesterday was our FAAN walk for Food Allergy awareness. The walk was what I would consider a success. There were over 1000 people there. This is small for most "cause" walks, but this was a big crowd for us. While food allergy sufferers are rare, the number is growing, at a scary rate. Of course, that rising number is why we walk.

I had every intention of attending this walk with my children as a walker, but fate had other plans for me. I was contacted last week about the ambassador position (which took me NO time to accept), and asked if I would be able to make a last minute change and attend the walk as an Enjoy Life ambassador. I'm not going to lie, at first I felt a little thrown off because change is hard for me sometimes. It didn't take long for me to realize that this was a big opportunity and I changed up plans.

I arrived at Wash Park (SUCH a beautiful park!!), set up my tent and stared in amazement at the amount of samples I was given to share with the crowd. Seriously, there were a TON! I would later be even MORE amazed by the number of samples that were gone after the walk. People slowly started approaching my (*ahem* Enjoy Life's) tent and the stories slowly started coming in. People started realizing that I was at this event, not as just a company spokesperson, but as the mother of a severely food allergic child. As people came to realize this, they started flooding me with their own experiences and stories. I couldn't believe just how many wanted to share little pieces of their world with me. One woman in particular stands out in my memory. She had never heard of Enjoy Life before and upon hearing what "allergy friendly" means to the product (free of the top 8 allergens) she cried. I knew instantly why she was crying. These were tears of relief, it was the weight of the world being lifted from her shoulders for just a small moment in time. She cried because she read the label (to verify as ALL FA parents do, ALL of the time) and saw that it indeed was safe for her son. She cried because there was a sea of people surrounding her that shared the same fears, concerns and stories. She was crying because she was overwhelmed by this relief. You see, many FA parents spend our lives in fear of the unknown, the fear of one tiny mistake, we just fear for our children's lives. To be able to set that fear down for just a moment means letting our guard down, that is a relief, but different from any other form of relief one will experience. This woman thanked me for being there and asked if she could hug me (I'm NOT the hugging type of person, at all), before I knew what I was doing, I was reduced to a few tears myself and hugging this complete stranger. When I look back, she wasn't a stranger, she was kin, definitely kin.

The emotions of the day kept rolling in. I had dads running over to the tent just to tell me how much they love Enjoy Life and how thankful they are for such a company to exist. I know this gratitude and I know it well. There were grandparents, cousins, aunts/uncles and even friends of food allergic children/adults who knew the brand and knew it well. I can understand that as well, my parents will scour a store looking for two things: Sun Butter and Enjoy Life. There were people who wanted to ask questions for co-workers and taking brochures to share with them. This compassion and sharing just made my heart one big beating smile. The blessings of the day were so much more than I had anticipated.

On another note, I am a firm believe in Yin and Yang. Yesterday's Yang being the walk and the many blessings that poured out. The yin of the day came a few hours later, when I got the phone call that my grandfather was rushed to the hospital and suffering from dehydration and pneumonia. My grandfather is no longer a young man (by any stretch), he is no longer a healthy man and so this trip to the hospital could quite possibly turn bad, really bad.

I think the blessings of the earlier part of the day carried me through hearing this news about my grandfather and stayed with me through the night. There is no doubt that we needed our Yang before our Yin yesterday. I tell my children that God has a plan for all things, big and small. Yesterday, as I was getting ready for bed, I reviewed the day in my mind and realized, I was looking at the blue prints of Gods plan for the day.


I have YET another announcement, but this one deserves a separate post. I will post it today (hopefully) or early tomorrow. As I said, it's been a busy busy time for us, thank you for your patience through all of this.

Holidays and Food Go Together Like Peanut Butter and Jelly (Pun Intended)

Holidays, ever notice how many of them there are? Ever notice how many of them revolve around food? Oh Easter, Thanksgiving, Christmas, Valentines Day and B-days, why must you be surrounded by baking cakes, pies, cookies and the like? Then there are you BBQ holidays like Labor Day, Memorial Day, Independence Day. I love barbecue holidays, but must they all be filled with macaroni and potato salads, dips containing mayo, cookies, cakes and pies...?

I can't honestly tell you which of the holidays above are the worst of our minefields. When you think of all the baked goods going into these holidays and Liv's egg and peanut/tree nut allergies, it's all a bit mind numbing isn't it? Barbecues are sneaky little things for us, you never know if a dip is made of sour cream or sour cream and mayo (and did you know ranch dressing has egg in it?). THEN, of course there is the fact that barbecues are plain messy. People grab a spoonful of the offending salad (potato or macaroni) and plop it on their plate (or dips)....did they drop ANY of it in another food on the table between their plate and the salad bowl? Did they use the spoon that was IN the bowl originally? Did any fall somewhere that Liv will come in contact with? Oh the barbecues, how we hate to love them.

Easter + Anaphylactic egg allergy = UGH! I don't think anything else needs to even be said here, do you?

Then there is the SUPER duper hidden part of two of the more popular holidays, Santa and the BUNNY. Now, you wouldn't think these super "fun" (yes, that's sarcasm, ha) traditions are dangerous, but these lines get busy and hectic which translates into parents bringing snacks. Oh, wonderful messy anything-to-keep-my-kid-from-melting-down, snacks. You see the problem now? Being surrounded by FOOD in a hectic and close proximity is a less than ideal situation, so we avoid it. Liv has had one pic with the Easter Bunny (prior to her allergy diagnosis) and that will probably be the last.

What do we do for the holidays? We try like mad to avoid all the dangers we can. Most of our friends are willing to count out potato and macaroni salads. I don't think I've seen a deviled egg in years now...not that I miss those suckers, at all. As for Easter, we do crafts and learn what the REAL reason for Easter is. This goes for Christmas as well. Some moms bake with their kids, we craft. B-day parties, sadly, we avoid. What I've learned through all of this is not only what we're willing to give up and do as a family because of this illness, but how little we miss all that is given up.

Aha! You thought I forgot Halloween, didn't you?! No way could I ever in life forget THIS holiday. The holiday of HOLIDAYS when it comes to being food allergic (not to mention that it's one of my favorites). This one will be tough when Liv has a classroom next year, but for now we keep it simple. We dress up and we go trick-or-treating...every year. You see, this is one of the easier holidays for us (by us, I of course mean *me*). We have neighbors that have known me since *I* was Liv's age and they are pretty much the best. They either make a special "treat bag" for Liv, or I take them some to give her. That works out pretty well, but then I have also have my "dirty little secret"...the "fake-out bag". What is a "fake-out" bag? Simple, it's an identical bag that Liv leaves home with, but filled with candy she CAN have. So, here is how the whole scam goes down: We go out and use the "safe treat bags" that the earlier neighbors gave as mid trick-or-treat snacking, finish up the evening and when we get home, I swap out Liv's real bag of candy for the fake-out bag. So there you have it folks, this is how we navigate the holiday seasons aka the madness.

Thank goodness for "Liv Safe" treats, as we call them in our home.