If you know me on a personal level, you know that I'm often inappropriate, but probably rarely to a stranger. I have no care in the world for being "PC" because I have common sense and believe that means I should have common courtesy. I believe that when one practices common courtesy they should not run into a situation that isn't exactly "PC". I could be way off here and quite a bit more inappropriate than I give myself credit for - who knows.
What? This is me taking life seriously, ha!
What I do know is that there are several things that are said to me (yep, repeatedly enough that I have a collection of them), that I am just over. Here is my smallish (maybe? It's growing by the day you know) list of things that continue to spike my blood pressure for a small moment in time.
"Oh, the *poor* girl/*you* poor child." (do NOT say this to my child directly, ever...unless you prefer that I shred your words and hand them back to you...).
(Start with sad looking face) "Wow, Billie - she looks just awful." Wow, okay...thank you - I think? I don't know if it's validation folks want to give or what...but they should keep that, seriously.
"So, what do you *feed* her exactly? I mean, can she even eat anything?" Well, as most children do, she *does* in fact eat and a ton at that.
"The girl should probably be in a bubble." You know what...screw you (forgive me, I'm vulgar at times and that was mild).
"I just don't know how you do it, you're supermom." This doesn't bother me, so much as baffles me. I never know just how to reply to it. My lack of general sense of emotion with others might be my own issue here though. I just feel I do what any mother or parent would do in my situation...face it head on and go with it. Right?
"Miss, the 'sick waiting room' is over there...." Yep, this was just last week as a matter of fact, mid reaction. If only my filter on my mouth didn't work so well. I talk a big game, but at the end of the day, I just quietly mess with people...I just smiled at her and continued to sit where we were, she got uncomfortable, apparently and moved. Meh, whatever.
"Oh she'll grow out of it, I had a cousin with a [insert any random allergy here] and she/he got rid of it." What? Are you kidding me with this? What could I possibly do with this? This does not give one hope, it makes us feel that You. So. Do. Not. Get. It. You should just move on and go about your business at this point. In all honesty, don't you think we know this is possible and probably know the possibility of our own child outgrowing their allergies? Most of us are not in this blindly (I would HOPE).
Now, back to me not worrying about being "PC"...if I know you and you've said any of these things to me, I've probably corrected/steered the conversation. Chances are, I'm not offended either, honestly. It's the stranger aspect that kills me. I have never understood the random stranger offering unsolicited and *uneducated* advice and/or sympathy.
Well, I'm tired and have a Dr appt to get Liv to tomorrow. Oh, you didn't think that because it's a weekend that we get breaks from these things, did ya?
Goodnight and as always, thanks for letting me rant/vent/ramble or whatever else this can be classified as doing.
Somewhere in the midst of all that happened, I also got a phone call that the teacher had stuck herself on accident as she was sticking Liv with the Epi Pen. So as I sat there with a now calm Liv, I was worried sick about her teacher too. They informed me that the she (the teacher) was also en route to the same hospital that we were in. For that, I was extremely thankful, then I could not only check in on her, I could thank her. You see, the teacher, we'll call her K, played a HUGE role in everything going as smoothly as it did. She was quick to call me and not second guess that something was wrong, after all, she knows Liv's features and characteristics almost as well as I do. She knew right away that this reaction was progressing beyond anything she'd ever seen and acted, quickly. K not only called me right away, but she was calm (for my sake and for Liv's), controlled and ready for whatever she needed to do. She did so much more than I think I could really ever expect one person to do, and yet because of her, I DO expect Liv's teachers and caregivers this year to be on the same level that K was. Everything from her calling me right away, not hesitating to call 911 all the way to texting a picture to me was brilliant.
So, back to our stay in the ER. After an hour of sitting in her room, Liv seemed to calm even more. Something still was not right though, we weren't out of the woods yet. I couldn't see it (yet), but something was still brewing. I've never had that feeling of impending doom before, maybe I was crazy and just worked up because of the events leading up to this moment. THEN again, maybe I know my child and I knew something was just not right. I was not crazy, over worked or insane, Liv started tearing at her face and before I knew it she was red and puffing up all over again. Crap. THEN the lip chewing began all over. I called the nurse in, you could see on her face that she was not comfortable with this situation. The Dr. showed up right after the nurse walked in, he took one look at Liv and ordered ANOTHER dose of the Epi and Benadryl. I've heard of these recurring reactions, but never seen one in Liv before. What in the WORLD did she get into?! THAT was the million dollar question of the day, that's for sure. Again, Liv responded to the treatment and I was told it was going to be a long day for us. Typically they will watch a child for approximately 4 hours after being given Epi. We were going to be there well into the night and maybe longer. I accepted my fate and called my parents. My mom decided I needed a break, or just some company and came to visit us. Bless her, she brought all the ER necessities that I didn't have time to grab (other than her ER bag I keep in the trunk of my car).
Another hour had passed and Liv had napped...only to wake up flushed, feeling all around bad and....puffy. Great. I called the Dr (by now he gave me the number to his cell and hospital pager, NICE), he showed up pretty quickly and again the same orders for meds were given. I felt like I was in some crazy recurring nightmare. The Dr and I came together to discuss what should happen as far as keeping Liv for observation or actually admitting her. We both decided admitting her was the best choice for the circumstance.
Two hours later we were being wheeled upstairs to begin what would be a 3 day stay.
There is still more to come on this post, but I will put that into another entry as well. I like to divide these stories into chapters, I promise to pull all the chapters together in the end. I will do this from time to time as you can see,this is just how I recall the stories in my mind.
On a side note, I'd like to take a moment here to mention another element of this situation. An outside, but incredibly important element, prayer (outside of my own quick prayer at the beginning). Do you remember prayer circles/chains, where you would call the first person on the list and they would in turn call the next, so on and so forth? Well, we had one of our own that day, but with a modern twist, Facebook. When my mom came, I took a moment to go out to my car and text a status to my Facebook. I was brief in explaining what happened that day, more importantly, I asked for prayer. I can't explain why I take these moments in emergency situations to ask for prayers, but my friends and family have never let me down...so again, I asked for them. I got Liv's ER bag from my trunk and checked the status, in 4 minutes or so, I had a handful of friends let me know they were speaking directly to God for us. All they asked for in return were updates on the situation. I could handle that. By the nights end, there were at least 30 comments from friends/family asking for updates, letting me know they were praying for us and all around being the best support they could be. The thing that amazes me the most about all of that, these friends/family are scattered all over the country and beyond even that. Friends across the pond over in England and even Ireland were thinking of us in these tense moments. Other than my mom, I was physically alone with Liv...physically. In spirit, I had a bevy of friends and family holding my hand and keeping me strong for Liv. I'll never understand what I've done to deserve such good people in my life and I'll never take that for granted.
You know, it recently occurred to me that I haven't written about Liv's most recent trip to the hospital. I can't believe I've left this story out, it's a whopper!
It was the first week in April. This past April (2010), actually. It all started off like any normal day. Liv was about fully recovered from having the Chicken Pox the week prior. I took her to her daycare where she took off playing right away.
That morning at work, I had to keep my cell phone put away because our VP was coming in for the day (of all the stinking days!). I don't know if it was mommy intuition, but at some point in the morning I felt a frantic need to get to my phone. I pulled it out and turned it on, only to see I had missed about 7 phone calls from Liv's teacher. At this point I was as close to a panic as I get (I don't panic often) and ran off to the restroom to call the teacher back. She stated that Liv was extremely itchy and developing hives on her face, none on her body. In an attempt to stay calm, I just told the teacher to give her Benadryl and keep her talking. Keep her talking because if she is talking comfortably, then she is breathing normally. She agreed and texted a picture of Liv's face so I had a visual on how things were going along.
Not even a full minute later the teacher was calling me back. What I heard next put my brain into a full frenzy..."Billie, when Liv gets breaks out...does she always play with her cheeks...like puff them out?" Before I could answer she told me Liv was playing with her tongue and biting her lips. This is it, I thought...a moment I've always prepared myself for, the moment I said, "Call 911 and give her the Epi....NOW." I heard myself say it, I thought for about 2 seconds before saying it, but it was so surreal. Here I was putting our emergency plans into action and I felt like I was moving in slow motion. I stayed there in the bathroom making sure to run through how to use the epi with the teacher and to call 911 first so they knew she was going to need an ambulance with Epi on board (did you know not all ambulances carry this life saving drug????!!). I told her to call me after giving the shot...I couldn't listen on the phone as she was calling 911 from the other line, more importantly I couldn't listen to my daughter scream when she was being prepped and injected. I am a super hero mom sometimes, this was not one of them.
"It's GO time!" I say that phrase a lot when it's time for something big to happen. As I gathered my wits and left the bathroom, I told my co-worker, "It's GO time, I gotta go..." She knew right away what that meant and locked up my desk for me. I ran by my boss and the VP, told them Liv was being transported to the hospital by ambulance, tossed them my keys and flew out of the door.
What do I do? Who do I call first? What is the quickest way to the hospital...WAIT, WHICH hospital am I racing to?! Oh God.....I feel this is a good time to send up a REALLY quick prayer...please be with my little girl and if you have one to spare, send an angel her way, you know...to let her know I'm on my way and keep her calm? These are just half of the thoughts that I poured through my brain as I jumped in my car and just started driving. I worked about an hour east from our home so I just jumped on the HWY and started driving west. I figured I'd get a call any minute telling me WHERE exactly I was going. There, one problem solved...sort of. THEN I called my ex-husband, no answer. Crap. I called him back, still no answer. Crap again. I called him AGAIN, he is active duty in the Army and I know sometimes he can't answer, I also knew if I called a few times in a row back to back he would get it and FIND a way to pick up the phone. This third time was the charm, he answered. "What's wrong????" I explained the situation...I don't remember word for word what was said, but I remember him asking if I was okay...that was the first time it all hit me, I was driving (at unmentionable speeds) and now I was crying, "no...no, I'm not okay." I remember him talking calmly and telling me I needed to calm down for Liv. I understood what he was saying and in that moment, those were the words I needed to hear. I hung up with him to see if I could find out where Liv was being taken. I called her teacher back only to hear all the sirens when she answered. Talk about a mind numbing moment in time. Once I knew where I was going, I needed to make arrangements for Tai. I called my parents, no answer. CRAP, not AGAIN! I called my mom's work, she wasn't there. Noooo! I called my dad again. No answer. At this point, I was exhausting all of the calm I had left in me. Suddenly it occurred to me to call my parents neighbors (they are close family friends and have been for years) the husband answers, thank goodness! He tells me that he will run over to my parents house and leave a note to call him right away or go over and he would let them know everything. He would also go pick Tai up from my place when the bus dropped him off. Okay, ex called...check, found out which hospital I was racing to...check, a plan in place for Tai...check. All of this took place in such little time, I'm still amazed to think about it.
I was finally at the hospital and RUNNING to the ER. The woman at the desk explained that there was no one with my daughter's name admitted yet. WHAT?!! No, this cannot be right..they told me THIS is where they would be. No sooner than I asked her to check again, she received a phone call. She looked up and put up a finger telling me to hold on a moment. She hangs up to tell me that she can't be certain it's my daughter, but there was a little girl en route that fit the situation I had described to her and they were about to pull up now. I heard the sirens as the ambulance approached. They pulled up and it was like being in a movie, I RAN to the glass and ripped the blinds to the side so I could see if that was MY little girl that was "en route". I swear it took forever (okay, about 30 seconds) to get out and unload her, it was my Liv they were pulling out on a stretcher. I could SEE her, finally with my own eyes...I could SEE her! I turned toward the doors to the area where all the rooms are and readied myself to charge through them...only they didn't open and a rather large male nurse had me in his arms before I could make another step...crap. I still had to wait. Finally she was wheeled by, he checked my ID and ran with behind a growing group of people also following her. We reached the room they would be assigning her to, the crowd of people only seemed to grow when we entered. I had fire rescue introducing themselves along with EMT's in training, Doctors, nurses, people from registration and even a Chaplin...yep, a Chaplin was put in place for Liv's arrival. I would later find out that on the way to the hospital she stopped breathing and was given a second dose of Epi. The crowd waiting for her was because she was in serious trouble and they needed a room that would accommodate whatever needed to be done. They had an intubation kit on the ready as well as a host of other equipment.
Anyway, the crowd thinned, eventually and Liv...what a stellar patient. She was so calm and strong. She answered all the questions they asked her and just handled herself as if she were so much older. I think God sent her the angel I asked for. She was given an IV for her steroids and fluids. Liv was responding to the second dose of Epi and the multiple doses of Benadryl she was given.
There is more to this story, but I think this is going to be one of those multiple part postings, this has been plenty long for now.
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.
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.
Alrighty, returning to this blogs true form of past and present postings, here is a present post.
So, over this summer, I've debated back and forth SO many times on what I was going to do about Liv's educational needs this coming fall. I thought of holding off and putting her in school next year, rather than this year since her birthday is only 3 days before the cutoff date. I've thought maybe "No-Name" (read: the BIGGEST school district in the state) school district would get their act together and the 504 would work itself out, it has not. They've sent me a draft of what they'd LIKE to put in place as Liv's 504 and honestly, I'm not even sure WHY they bothered. They kept it as brief and with as little detail as they could legally get away with. I mean one example of it's negligence is the wording for her egg allergy. To quote the "drafted 504" she is allergic to "raw eggs (freshly baked goods)." This presents a big problem for us, Liv is more than just allergic to "raw egg and egg in freshly baked products", my girl can't even come in contact with TRACE AMOUNTS of egg/Albumin/Globulin/Meringue (well, you get the idea...there are a TON of names for Egg listed in foods). None of these names were mentioned in the slightest on the 504. You can see a better list of names for eggs HERE. This 504 also states that her exposure to allergens needs to be limited during times of eating and snacks. Um...again, a NO GO here. "LIMIT"??? Uh, how about no room for error? My last point that I will harp on with the 504 (there are many issues...but I'll keep it brief for you :) ) is its complete lack of mentioning her Epi-Pen. You see, the principal and I have been at complete odds about her Epi-Pen and where it is to be kept. He wants it in the office....in the OFFICE locked up! I told him that I don't care about policy, she NEEDS it with her at all times...ALL times. For goodness sakes, she carries her Epi Pen "on her person" 24/7 as it is right now, she has done so for years already. The point is, when something goes wrong **KNOCK on WOOD/God forbid**, she needs that Epi-Pen within SECONDS in order to save her life. Oh, I'm getting carried away, sorry. Anyway, it seems that it went from us going back and forth over the Epi Pen issue to them just forgetting about it entirely, most likely hoping I'd overlook this issue. Yeah, RIGHT. So....that's that on the topic of the "proposed 504 draft."
On to some more issues at hand with the school district/principal at "no name" elementary. The principal finally contacts me last week requesting to meet with me on 08/13/2010. Seems like this is okay and reasonable, right? Wrong. School registration is on 08/04/2010 and the first day of school is 08/23/2010. This gives me ten CALENDAR days from the meeting til the first day of school. Now, had the principal NOT dropped the ball last SCHOOL year when I went in to start this process...we would have this done ALREADY. I'm a little more than frustrated, in case you couldn't tell.
Now, I don't know a single person that would trust this school with their FA child and Liv's father and I are not about to test their efforts either. What's the decision we've come to?? Home school. Well, sort of. There is a public school that is tuition free and online. Sounds kinda extreme and maybe even a but weird, right? I know, I thought that also, until I checked out the website and spoke with several staff members. Here in CO, it's called COVA (Colorado Virtual Academy). If you would like to read more on this you can check out k12 here. It is fully guided and graded by an actual teacher, I would just be a "guide". Only about 15% of Liv's curriculum will be online. How in the world am I going to do this?? Well, just like everything else I do, with 110% effort. I work part-time in order to balance my work schedule with Liv's schedule (Dr appts with regular Dr's, specialists, emergency situations...just all around gives me more flexibility) and Kindergarten is only part-time. Somewhere in here, we will fit her required hours of school in and be a fully functional family...maybe not sane, but definitely functional. The other perk to this is I can delay her immunizations a bit longer. I know I could sign the waiver for regular public school, but why chance it with so many kids around? This way, it's just us and we can do the immunizations a bit more staggered.
What am I doing about the school?? I'm fighting like hell for the rights of future FA students there is what I'm doing. I'm just fighting them without my child attending there. With all the legislation being passed this summer in Colorado, the school doesn't really have a leg to stand on and I will be the voice our community needs. I can't see backing out now and letting another poor unsuspecting family deal with this nonsense. It doesn't hurt that I'm already an active member of the school's accountability committee which is a group of parents that serves as liaison between the parents of students and the district, bonus for me.
SO, at this point, I am publicly announcing that I've chosen to put Liv into Kindergarten this year, just not at our local public elementary school. As for next year, Liv will attend a charter school in Littleton. The principal of this school is a friend of mine AND has a child with food allergies just like Liv. She is wonderful and she totally understands the needs Liv has. It's just unfortunate that her Kindergarten is already full with a HUGE wait list, or Liv would be going there this year.
Let's just go ahead and pick this up in June of 2010.
I've tried with VERY little success to get a hold of the principal at "no-name Elementary". I've called the school's general number and left voice-mails as well as I've e-mailed him. No response. I've decided to take matters into my own hands and above/beyond the principal's control. I decided to call not only the school district's main office, but also our local office of Civil Rights. After getting an immediate response from The Office of Civil Rights, I suddenly also heard back from the district. Small miracle, but I even received an e-mail from the principal. I'm amazed at how suddenly getting back to me has become a priority.
There is a long list of what went wrong and where, but if you're ever in need of advice, I can definitely let you know what to watch for and how. I was caught completely off guard with just HOW bad our situation has been handled.
The district 504 coordinator has been in touch with me personally and taken over the whole process vs the principal taking any responsibility here. I will be sure to file a complaint with the district as well as a grievance against the school. I'm deeply saddened by this entire situation. I'm more than disappointed with the choice of FREE PUBLIC school we have available to us in our neighborhood.
I don't know where we're going from here at this point when it comes to schooling, but right now, nothing has me feeling okay with Liv going to "No-Name Elementary". That's sad.
So, I asked and I received! I asked for some questions that you all might have for me in regards to our life and how we live it...and you asked!
1. Liv doesn't know a "normal" menu when it comes to food, when you do the tests for soy and wheat and say she can have those, how will you go about introducing those new foods to her?
This is a great question and one I've pondered for a long time. Actually, it's more like I've tried to envision what this would be like! Once Liv goes through the process of doing food challenges to wheat and soy, I imagine the first thing we'll do is go on a family hike and pack a lunch of SANDWICHES. We might even finish the evening off with grilled cheese sandwiches and not just ANY grilled cheese, but I envision buying a few different kinds of cheese and making it a "gourmet" sandwich dinner! I can't tell you why this is my first meal of choice for her though, maybe because it's such a basic meal for most and a such a hurdle for us. As far as soy goes, I love using teryaki marinades and I typically will make a pan of food marinated for Tai and myself, then a separate pan of food for Liv that has a marinade just for her.
From that point, I think it will be like watching a child in a candy store! If you've never really read food labels, soy and wheat are in SO much! This is going to be an exciting new chapter for us, and maybe a bit overwhelming even. That's okay though, THAT kind of overwhelming won't make me throw things across my kitchen like a crazy woman ;).
2. What are your concerns with Liv and the school setting? (kinda vague question but with her starting school a possibility what are your specific concerns all together)
This question covers quite a broad area in our life right now. Liv IS scheduled to start Kindergarten this year (I will release more details on that as they come, or I feel comfortable sharing publicly). I have so many fears with school coming up. First and foremost, I have to hand over CONTROL over things to basically strangers. Am I a control freak? You betcha, just ask my ex-husband (okay, don't, ha). When it comes to Liv, I have pretty much taken "control" to a whole new level, but I feel, with good cause. I fear that a teacher or PERA will forget to clean something that is an everyday common object, like a computer keyboard. What's so wrong with this? EVERYTHING. The child using it before her just might have had a PB&J sandwich for lunch, or pb&j type snack....heck they might have had breakfast right before of eggs. Nothing wrong with that child eating any of that and touching the keyboard, but if it's not cleaned properly...well, I try to NOT imagine the rest of that thought. I fear that her teacher, principal, PERA, nurse or anybody at the school doesn't take her food allergies as serious as they are. I fear that things go well for a good amount of time and anybody responsible for Liv gets complacent...only to make a mistake. There are many fears that run through my mind at any given moment. The biggest of these fears though, is the fear of a reaction happening and the adult with her at that moment panics, or doesn't react in time, or just plain can't deal with the situation. I know that my child appears 95% of the time to be a healthy, happy, hyper, imaginative and "normal" child, but in minutes, seconds even....she can be taken from me. Yes, that is something that is always possible, to everybody, but the chances are a bit higher in my child's case and she walks through a minefield of hidden dangers every single day.
3. How will life change for the 3 of you when Liv is able to start eating foods she's never been allowed?
Honestly, I hope it doesn't change a TON. Does that sound completely weird and sadistic of me? Well, we've made a tradition of cooking together and reading labels together while making our meals. We've made a point to make sure a good percentage of foods we eat are made of 5 ingredients (on the label, not the meal itself) or less. Label reading is such a habit though, I don't know that much WILL change. Some nights might be made easier by being able to make quick and simple dishes though. Oh, I might have to put a lock on the pantry, Liv is quite the food lover and well, I can imagine she will be in food overload soon!
4."It's not fair to picky children to limit what they're allowed to eat because of one child's allergy." What do you say to parents who want to bring in treats to the classroom but expect to be able to bring whatever their child likes?
I feel that I have to approach this question in a gentle manner rather than aggressive. If I had somebody ask me this personally, I would start by softening my entire demeanor. I'd have to say that I would certainly be able to sympathize with their situation. So....here is the best "script" have to answer that...for the moment.
"I can certainly understand what a difficult situation that is, and I too am in that same boat, only the food restriction for my daughter is life and death. I want more than anything, for you to know it's not my intention to take away from your child's experience here in school, my only intention by making these requests is to keep MY child alive and thriving. I know it can seem like I'm this overbearing and paranoid mother, but I can assure you I am not (enter props....her medicines, medical records and pictures of her having a reaction). You see, avoiding her food allergies is only a PART of our battle. These meds are taken by Liv every single day, some of them multiple times a day...just to help keep her immune system from being in a constant frenzy. (Point to her records and pictures) Sometimes all these meds and avoidance aren't even enough to do the trick. Liv has had WAY more than her share of ER trips and reactions in her short little life."
I do have a video that I would LOVE more than anything to share with the parents of Liv's future classmates. I don't know that the school will allow it, but I will share it here.
VIDEO
5. How has Tai handled these food allergies, being a non-allergic child himself?
Tai has been such an inspiration to me. He is an extremely laid back, super intelligent, but paaaainfully shy child. There have been times however that he's spoken up to strangers offering Liv food (samples at stores, bakery at stores offering cookies, etc...). He is quick to make sure others know they cannot just go offering his sister anything at all. I love seeing this protective big brother come out in him and I hope that maybe someday Liv sees all he is doing for her as well. He's had no problem giving up some very basic foods like eggs, cookies, peanut butter (and believe me, we were some peanut butter loving FOOLS pre-allergic Liv :) ) and an endless list of candies. Like I said, the kid is an inspiration. He does this in SPITE of all the annoying little sister things Liv does to drive him crazy ;).
6. Just how AWARE of her allergies is Liv? Does she know what all she is allergic to?
Oh yes, she knows her list backwards and forwards. This is vital information that I've made a point to repeat to her and have her repeat back to me several times a day...everyday. She knows what her Epi-Pen does and where it is at all times. She carries a backpack everywhere with her (it holds her Benadryl and her Epi-pen) she keeps the backpack with and on her at all times for the unfortunate event that she should somehow become lost in a store...or really anywhere. She NEEDS to have her meds with HER. She knows this and follows this. Does she understand how serious this all is, well...I think she gets it as well as a 4 year old can. She's been rushed to hospitals by me as well as by fire rescue with full lights and sirens. She might not fully understand "life and death", but she knows the sense of urgency around her in a bad situation.
Well, that is all the questions I've received this week, but please...PLEASE feel free to contact me and send as many as you like. I promise to read and reply to as many as I'm able.
