Happy Birthday, Maddy!

When Maddy turned seven, our family celebrated by beginning a new chapter that was be life changing, helped to raise awareness for those suffering from food allergy, and helped educate people about OIT. Now, as Maddy turns 8, and will begin the 3rd grade, so many possibilities are open to her as a child that doesn't have food allergies standing in her way!

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Check out my other blog, The Best Medicine, about my husband's battle against cancer.

Sunday, October 21, 2012

Right on Track

I make a lot of wrong turns. Like, really, really wrong turns. Recently a friend’s Facebook post embarrassingly admitted to making a wrong turn that took her 22 miles out of her way. Though I only admitted in my head, and am only telling you all now in secret, I know exactly how she did it. I’ve done it plenty of times. For some reason, your warm hearts and broad shoulders make me want to open up and spill all my secrets. My husband certainly knows I’m directionally challenged, but the degree of which I don’t think he understands. Now that we have a GPS system, it has actually become worse – I go nowhere without it & at times shock myself into thinking I simply can’t go anywhere unless I have it. I don’t want to go miles & miles out of my way. When it comes to our lives, we take wrong turns all the time, whether we admit or like it, it’s how we learn, how we fix our mistakes, how we grow. I guess if we were perfect, life would be boring. 

Need I say more!
Some days, though, it feels like all I do is take wrong turns - start the day late, say the wrong thing to my husband, miss an appointment, whatever it may be – I mess up! There are plenty of moments I second guess my professional judgment – did I deliver that lesson effectively, handle that student fittingly? In parenting, it’s much the same - I give my best as a mom, but there are many days I go off track. According to Parenting magazine, I’m probably not feeding her enough whole grains, I’m certain she’s watching too much T.V. and I know she’s not reading near enough. I am also pretty sure I overreact at times, am sometimes impatient, don’t do enough to help in the classroom, and then in a strange catch – 22, am somehow helicoptering, tigering, or whatever they call that parent that over-controls these days! Everywhere I look, everywhere I go, I am certain there are things that I can’t get right! The question really is - who doesn’t make these kinds of mistakes, get off track at times? Life is tough, parenting is tougher.

I know this because at the end of the day I am beat; exhausted to my core from our over-planned, overworked schedules. There are days I feel like a MAC truck has hit me full speed; days I am so tired that when I drag myself out of bed each morning at five in the morning, I look forward to that evening’s bedtime. But each day we do it again at 110% - full speed ahead, making decisions, left and right along the way. 

The staff with all the answers!
So, when doubt - questions, worries, and concern, enter my mind about the desensitization path being a wrong turn for Madeline come about, most often I’m able to tamp them down with answers from Dr. Mayer, online discussion groups, talking it through with Jason, or even seeing Madeline’s quick and sure personal confidence. The truth is this treatment is working and it is working for many, many children, which is exciting. But if she has even one symptom, I begin to second guess this journey we’re on and the “what if’s” make roadways in my mind. If she has even the slightest hint of a tummy – ache at the office, I worry, “Are we doing the right thing?” If a hive threatens her skin, my stomach worries. Dr. Mayer alleviates my fears always, especially since none of her symptoms are ever truly worrisome. Jason & I wonder if her symptoms may be bubbling up from her psyche, another concern of mine altogether. As a good friend of mine, one who probably knows me best, says, “Maybe she’s like her mom and pushes all her real feelings down!” Maybe I need to sign her up for therapies now… or just get her going on a blog!

Utter happiness!
Much of my personal apprehensions were relieved September 26, a regular appointment day for Maddy, but an extremely special day for “one of the girls,” a friend we’ve come to know through Dr. Mayer’s office,  Ella. Some know her simply know her as ‘E.’ Ella began treatment, peanut desensitization, in April 2012 and had only a few setbacks here and there due to sickness, fevers and such, but really a great treatment otherwise. Ella’s parents, Angie & Chad, found Dr. Mayer’s office just before they were ready to pack up and move their lives down south to another doctor’s office to receive care for peanut desensitization because, as anyone who has a child with food allergies often feel, they were desperate to find care for their beautiful daughter. Ella is anaphylactic to peanuts, which they learned the hard way when she had an anaphylactic reaction at a Pizza Hut in January 2012. They were not about to go through that horror of anaphylaxis again – watching their daughter suffer – especially when they could do something about it. 

The kiddos!
Our entire support network showed up early that day to celebrate Ella’s graduation – a 24 peanut food challenge to mark her final day of desensitization and cross the line into maintenance. A celebration was in order! We marched in, one by one, gifts and cards in hand, words of encouragement floating out of our mouths as Ella began tablespoon after tablespoon of peanut butter that would mark an end that was actually a new and wonderful beginning of a whole new life for her, with less fear and anxiety filling their everyday lives. Her parents watched, teary-eyed, and the rest of the parents, too as tears of hope filled our hearts as well. Someday our children will do the same. Our own children, a little scared to go too close to all the peanut butter drew near her in awe as Ella completed the impossible. Then it was over, she did it, jumped down and played. Simple as that. In the hour that we waited, nothing happened – and that was a good thing. The rest of the kid’s doses were increased, we had homemade peanut and tree-nut free cake to celebrate Steven’s birthday and Ella’s graduation, and we watched an endearing video of Ella’s journey made by her father. We celebrated, laughed, and dare I say cried just a bit together about the wonder that is happening before us, together.
Group hugs were in order!

In that dosing hour we forgot about hives, stomach aches, and reactions, and other possible problems. There were none. Nobody asked if the cake was okay, to check ingredients, or to check an itchy spot. All was right with our little allergy-free world! Ella even got an entire gift bag full of peanut-filled candy from an OIT alum!

Amazing family paving the way!
In a moment of Zen, I looked around the room at my support group, and Maddy’s. Everyone was smiling, happy. Ella, beaming, her parents too. This celebration was why we were completing peanut desensitization. There was no other reason than this moment. The journey, in this case, is about the destination, and we have to keep our eye on the prize. Every little stomach-ache, and tiny hive, is allowing our daughter’s body to prepare for something bigger, something greater. In this case I am looking forward to that bigger picture and ever since that moment. I thank you, Chad, Angie, and especially you, Miss Ella, you are some of the bravest people I know and you paved the way for many of us to come. Thank you for providing the road map for us, being our GPS in this life-changing experience. We appreciate your guidance, your advice, and most of all, your support. This is one journey that we’ll be on for a long time, no matter how many miles; we’ll sit back and enjoy the company!

Lots to celebrate, too!

Peanut/tree nut free party!
The Moms!

Thursday, October 11, 2012

BONUS BLOG! Midweek Excitement!

As soon as we began desensitization, we began discussing movement from the peanut free table. Maddy could not wait for the day it was an option. More than anything because the table is filled with a bunch of boys! She has always had a friend to sit with, but realistically, my daughter is a social butterfly and if you know anything about my daughter at all, you know that her friends drive her life... friends, social events, friends, and more friends! So, having the option of just one friend at lunch doesn't ruin her day, but it is kind of a bummer, really, and she knows that it would just be AWESOME to sit with anyone she'd like!

So, when Dr. Mayer let us know that, sure, she could sit in a new seat, at a new table, with a few exceptions, she was GEEKED! He let us know that as long as we, her parents, "could handle it," he didn't think kids at her age should be excluded since certainly they know not to share or touch others' food, and could probably handle washing down their area prior to eating. I was excited for her, and Jason, I believe, was elated for her. Given that the kids don't eat in a classroom group, I added the napkin as a barrier, just for one more safety precaution and the plans were made. Honestly, though, the ace in the hole, was desensitization. Two months ago, I am not sure I would have agreed with him, though my impression is that he doesn't necessarily recommend the peanut free table for anyone in second grade, believing that it is too exclusive, which is actually right in line with my general philosophy.

After my mini panic attack, I prepped Maddy for school, sent her in with a lunch, a wet wipe, and a fresh napkin. Jason went into speak with staff & prep them for what was to come!

When I got to work, I watched my phone all day... Just in case, but not only was all well... all was perfect! She washed her area down twice and was excited, so excited to have friends ALL around her and she didn't have to choose one! And can you imagine the anxiety let down for her to not have to worry in the morning if she would have even one friend to sit with at lunch, if even one friend has a peanut free lunch that day?

Congratulations, my girl!

Sunday, October 7, 2012

Only the Best

Professionally & personally, I belong to a number of groups, organizations, and committees. Dutifully, I darn near run myself backward, forward, and sideways to make each and every meeting that goes with them. In my profession, a teacher, I participate in much discourse regarding children and what is best for them. Through my years, I have spoken with, been hugged by, yelled at, trained with, been complained about, been thrown out of meetings by, and have also received thank you letters from parents. Parents simply concerned for the education, welfare, happiness of their child. Parents much like yourselves, I’m sure. 

As a teacher and parent, I am on the front lines with children every day of my life and also work closely with my own daughter’s school, specifically in regards to her disability, anaphylaxis. Even at church, I teach Sunday School and am in charge of the happenings, events, and curriculum there. And I’m exhausted, too.  But - I am no more exhausted, worried, worn out, troubled, or in need of wanting the best for my child than any one of you. As it turns out, we all want the very best for our children. We may not all agree how it applies, how to get there, or just what is the very best, but the common denominator is that all parents, no matter how we go about it, want the best. We may not have the means, wherewithal, or know how, and getting there may seem half the battle, but our children mean more to us than anything, no matter your child’s need. 
Something I try to remember when speaking with parents.

Our children run the gamut in differences. In one classroom where I teach you will find students with specific labels – learning disabilities, emotional impairments, attention deficit hyperactivity disorder or attention deficit disorder, or even cognitive impairments. Don’t forget though, the students with autism spectrum disorder, anywhere from low functioning to high functioning, or Asperger’s syndrome. As a special education teacher my responsibility is to advocate for children with special needs, something I take on with vigor in each of those committees aforementioned. In fact, it is often one of the main responsibilities in that capacity – to represent special needs, specifically at times, to be the voice of the child. Something I take very seriously. 

What is interesting, though, is that the children in the classroom, probably your child’s classroom too, the ones with the labels, are not the only ones we should be concerned about; the rest of the bunch are far from “normal.” The rest of the children, at the very least, maybe rushed out of the house without breakfast that morning because mom or dad were late for work, or maybe because they are at dad’s house this week instead of mom’s. Or, their homework isn’t complete because nobody was home to help them because parents work nights. There could also be a lot of stress in the home due to losing their house or living with grandparents. Academic concerns for those kids that don’t receive services are often hidden behind poor behavior, incomplete work, or just poor grades. There are other simple truths we may not consider, or sometimes just forget – mom is having surgery & it is weighing heavily on their minds, divorce, new babies, sick grandparents, moving. Maddy went through most of kindergarten with Jason in chemotherapy. I’ll never know the truth of that year on her heart, but I do know that if she were older it would have come out in behaviors, academic issues, or worse; lucky for me and my village. 
Imagine life with labels like these!

Then there are kids like my own baby girl, a population of kids coming through our schools increasing at alarming rates – children with food allergies & anaphylaxis. Scientists estimate that as many as 15 million Americans suffer from food allergies, according to the Food Allergy& Anaphylaxis Network.  A study published by the National Center for Health Statistics division of the Centers for Disease Control and Prevention reports that one out of every 25 children has a food allergy, representing about a 20% increase between 1997 and 2007. Those are crazy statistics!

If our children actually wore a label, a great big tag, through the hall or, for us parents of children with food allergy, when they walk into a restaurant, life may be more simple for us to identify and help immediately rather than try to piece issues together like a puzzle. Especially if when all people read that label, ‘Going through a Divorce,’ they had some empathy, and took action, took a little more time with the child, understood the chip on his shoulder that day might be related to the fact that he is exhausted and overwhelmed by the stresses in his life. Or maybe when a person reads ‘Can’t Afford 3 Meals,’ they would offer a hand, an apple, a granola bar, and that would allow a child to concentrate more, improve behavior, or simply make a phone call home to provide the application for the services needed. Obviously, I wouldn't want our children labeled for real, because our children, our babies, are more than a tag or a sticker. As parents, we must consider the whole child, that's our job, our charge is to educate, advocate, and risk putting ourselves out there, being "that parent" for them in order to get them what they need.

Fortunately, I have the opportunity to meet with and speak with parents regularly. It is an opportunity for me to learn the ins and outs of a child’s family and life and to learn more about how to help a student. Whether the parent is frustrated or happy with what is happening in the classroom, my role is to listen, problem-solve if necessary, and allow them the space and time to discuss their child’s needs. As their case manager I am to advocate and be sure their child’s requirements are met appropriately and effectively. I am not to judge them or fight them. It is Me with Them not Me vs. Them. 

One of the lessons learned for me as Jason has recovered from cancer is that everyone has a story. It is impossible to look at a person or a family and know what goes on behind the scenes; there is a certain level of privacy every one holds true publicly. Unless we’d told you our situation or you were ‘there’ when our cancer story started, most people would not know the ins & outs. Why would you – he looks healthy, is healthy really, and it’s not generally a part of the obligatory handshake ritual – “Hey, how ‘ya doing? I’m Jason, cancer survivor.” In fact, he doesn’t really like talking about it all. It’s me that talks about it; I think it’s become a part of my writing therapy! And, of course as people ask, and we tell. 

Everyone’s story, though adds to them to who they are as individuals or families. Adds to their day, their lives. Children deal with a lot. Adults deal with a lot. It comes out in the way they work, or don’t work with their children. Regardless of all of this, whether we agree with each other, whether we like the way the other person does it or not – we each want what is best for our own children. Those adults that have to work nights probably didn’t strive to work a night shift, these are the cards they’ve been dealt. Nobody hopes their older child will have to babysit their younger children while work, it just happens that way. Few parents wish for surgery the same day as a big math test or conferences, it’s just the way it worked out. No parent planned to give birth to a child with a learning disability, autism, ADHD, or any other disability – but they will do anything for their child to help them, aid them, and allow them success in this world, make their world bigger, brighter, and just a little bit greater. Just as how I feel as a parent with a child with food allergy, no matter if I am considered “that parent” by every teacher from here on out in her school career. I will do what it takes to educate, advocate & make you understand what makes my daughter tick, just as I’d expect from you if you were my students’ parents.

Much of this, however, comes with a lot of argument in the food allergy world. There has always been some dialogue and contention, in food allergy about OIT, specifically peanut desensitization.  The support group of women & men that visit Dr. Mayer’s office, of course firmly believe in OIT and the research behind it. There are people, though that believe in avoidance of the allergen entirely, which would mean desensitization, or OIT, is out of the question. There are doctors that support abstaining from OIT, just as doctors that support it. Much like anything, honestly, it is possible to find research and data for what you need. In my initial research, I found articles for both, I was swayed to both sides, my heart found reasons each way. Ultimately, I was able to look objectively, consider the pros and cons (Every Mommy Has Her Moment) because, as I said, my family had to make a decision based on what we wanted for Madeline. I’m not saying that either decision is better or worse, because we decided for our child, with her in on the discussion. We all have our story – medical history, family history, commitment, and education, all tie in to that belief system and finally your decision. 

Dose goes down with no probs!
Thankfully, our story is still being written with peanut desensitization and Maddy finally reached the end of the dosing schedule that she would have finished the very first day of Rush Day had she been able to continue without any symptoms, Solution D, six ml. She had no issues or concerns in the least, again making us feel grateful that we’ve been able to complete this part of the program so far with no concerns. Two weeks of Solution E and it is on to peanut flour; we can feel that whole peanut just creeping up on us! Every day we feel safer as she passes to the next level and speaks about what she will eat when she graduates, what she might try, but more than anything how she feels knowing this is working! Every day we feel we made the right decision for our family to try something that gives us and her hope to make her world less dangerous, bigger, and a brighter place to live in! And so does Maddy!