Brett and I took the red eye flight last February from Phoenix to Dulles and arrived at 6 am.
He slept on the flight.
Me, not so much.
For him to be comfortable enough to sleep, it means discomfort for me as he sprawls his body across both seats, pinning me down, I am unable to move for hours.
Finally off the plane, eyes still blurry as they adjust to the air and lighting. We had to find our next gate; it would be a shuttle, and then a long walk. As we made our way through the terminal, we passed a food court.
Within a few seconds, “Mom, something smells horrible, it’s bothering my throat! Get me out of here!”
I look to my left and see fast food workers behind trays, food sizzling away. A Chinese buffet. Peanut oil is sifting through the air. I can’t tell the difference, but Brett’s body sure can…
We quickly run away. I pull him aside when we are safe from fumes, and pull out a Benadryl Fastmelt.
6 am? Really? We have to worry about Chinese Food cooking at 6 am?
I just want some coffee…
This is the reality of parenting a child with a peanut allergy.
I have so many stories like this. How to even begin?
There was the time we went to an annual game dinner with my husband’s co-workers, where we had to flee the scene after my son, running around outside with some other kids, had a nose-to-air assault. We discovered the culprit. Wild turkey in the smoker, cooked in, you guessed it: peanut oil.
When Brett was a little shorter, a few years ago, counter-height, we were checking out at a natural foods store in town and he began to sneeze. And sneeze. And sneeze. Multiply this 20x or so, the stores owner and I look at him in alarm. What is going on? I pull him out the front door, give him a Benadryl, and have him stand outside while I finish paying for our “nut-free” crackers and supplies. I look down, a peanut cookie, wrapped in a light cling-wrap, sat nose-height directly in front of him on the counter.
Our favorite store, a birding store, has open bird seed bins, with peanut dust flying everywhere. It used to be a treat to go there; now we don’t go in there at all. Now I worry even if I go there myself, what if the product I purchase for him has peanut dust on it? And then there’s the local garden store with a large pet bird. We loved to visit just to see him, until we were there watching as a staff member fed peanuts to the bird; shells and dust littering the floors. I haven’t been back.
We are in Beaver Creek, Colorado with my family. Before going out to dinner, I check the website of each potential restaurant, and start the inquisition. Do you use peanut oil? How many menu-items have peanuts or nuts? Do the people working there sound like they know what they are doing and will take care of my son’s meal? After dinner someone mentions going to get ice cream cones. They all go. We have to search for 15 minutes to find a convenience store, to find a pint of ice cream with an allergy-friendly label, because we can’t go to Ice Cream Parlors. Cross-contamination. Our family looks at us kind of funny. It was bad enough it took three tries to agree on a suitable restaurant. Now this? They wonder, are we being just a little over-the-top with our caution?
During intermission at a local high school play with friends, baked goods are spread out on tables for purchase. So tempting. My son’s friend hurries over and picks out two cookies. There aren’t nuts in it, she says, Brett do you want one? I’m sure they are fine!
My son stiffens.
Then runs to the hallway, away from all the food.
There’s nothing there for him.
Even an innocent little cookie, baked probably with love by one of the high school kids parents, and probably without nuts, is off limits. Who made it? What are the ingredients? Is the chocolate they use made in the same facility as other nuts? Do they have nuts in their kitchen? I found a squished old allergy-friendly chocolate bar in my purse, left over from Halloween, and that had to suffice until the play was over. If only they sold something in a package. With a label. Without nuts. Without being produced in a facility with nuts, he could have something to eat.
Quite a few of my friends have suggested I consider writing about what it’s like to deal with this peanut allergy on an ongoing basis. My response so far has been, no thanks. I don’t think I could keep up on the news and still stay a positive happy person.
I’ll keep it health-focused. That makes me happy.
But food allergies are on the mind this week.
One reason, is that recent news has been particularly horrifying. When I open Facebook, where most of my food allergy-related sources live and communicate allergy news and happenings, the photo of a beautiful, smiling 13-year old girl, Natalie Giori, is repeatedly shared.
Natalie died from anaphylaxis in late July. Her parents this past week spoke out about the incident. She died because she ate a Rice Krispie treat at a camp cookout. She thought it was ok. It didn’t look like it contained nuts. But it did.
Her Benadryl didn’t work, nor the 3 epi-pens administered.
As a parent of a child with food allergies, I have to keep up with the news. But often, it’s hard. If I miss out on important new developments, and learnings from fatal, heartbreaking, too-close-to-home stories like the one above, I will miss out on making myself a smarter, more-prepared parent.
But if I read about this too much? It just depresses the heck out of me.
As I’m contemplating Natalie last week, my son starts 3rd grade.
At the beginning of each new school year, food-allergy parents need to head straight to the school nurse. We discuss our emergency action plan. We sign new forms and have our doctors sign as well. We give the school a recent photo of our child so they can post the photos on their emergency forms in all the common school rooms. We get new epi-pens so the school has valid ones for the year and double-check the box of Benadryl is up-to-date. We meet the new teacher ahead of time to make sure he is aware of the allergy and knows to have two epi-pens follow Brett wherever he goes. I’m lucky; our elementary school is fantastic and has the best policies on allergies a parent could ever want. The nurse, Mandy, a gem. Thankfully, that’s the one place I am confident I can leave him.
Our school also sends out an informational form to parents about food allergies, the severity of them, and outlines procedures used at the school to ensure nut-free rooms and zones exist to keep students safe. Although nuts are not banned, the policy cautions parents about sending kids with nut products in their school lunch.
I know this is a pain for other parents.
Every school year, in the news, I hear about some group of parents, in another community around the U.S. fighting the school about nut-free policies. They don’t understand why they need to change what their kids eat because of other people’s issues. Can’t these allergic kids just stay away from nuts?
They can, yes, to a certain point.
We do, as parents, whatever we can to make sure our kids avoid the allergen. In the stories I mention earlier you can see that. But sometimes these kids come face-to-face with the allergen and it’s unavoidable, sort of like second-hand smoke, or worse, using another recent news topic, like a chemical weapon.
Severe food allergies are not the same as regular outdoor allergies: It’s not sneezing and wheezing from dust or pets or plants. Exposure can cause anaphylaxis. Where someone’s throat closes up and they are not able to breathe. Like my son in the airport, or the game dinner, coming face-to-face with sizzling peanut oil. He is just walking down the hall, or just running around, and then bang, it happens!
Epi-pens are powerful and save lives; but in some cases, like with Natalie, who did actually consume the peanut, the success rate is not 100%.
At a school, nut residue could be on a doorknob, or a table, or on playground equipment, or just on a friends hand, who touches my son, and it transfers. And that’s why it isn’t just something we as parents can control on our own.
And why many of us, parent and child, navigating life with food allergies every day have so much anxiety.
Every year I get better in my role of being a food allergy parent.
The difficult part though involves finding the right balance. Teaching the child to advocate for themselves as they get older, and also ensuring their safety in an emergency. I get loads of unsolicited advice from family, acquaintances, and some friends. Who judge my actions as a parent, when they have no idea what kinds of dilemmas we face each day.
Do you really have to read that label 15 times, or ask the server if there are nuts in a hot dog?
Nobody puts nuts in hot dogs.
Well, yes, someone might.
But the label doesn’t say “produced in the facility with nuts” it must be ok, right?
Why do you need to call the company to ask?
Because it’s not a law; companies do not have to label when there are nuts in the facility, or even when foods are processed on the same equipment. Cross-contamination is a big deal.
And surely he can learn to speak up for himself and carry his own medicine.
I don’t know. Would you put a couple of huge needles in an 8-year olds backpack, and expect him to save himself by stabbing himself in the leg if his throat started to close up from contact with an allergen?
Other kids go to camps all summer, why does Brett only attend a few?
Most camps around here have no policies for nut-allergies and no training on epi-pens. Would you leave your kid somewhere when you can’t ensure their safety?
And, you haven’t left him at a birthday party or playdate by himself?
Not yet…but I’m working towards it!
Aren’t you just being a little too hovering, a little too over-protective?
He needs to learn independence.
I don’t know.
It’s not that I don’t want to. It’s just leaving my child with someone else is a big responsibility.
For me and for the other parent.
Food allergies are certainly not the only childhood problem. All parents have issues with their children. My son’s friend Ashley has Type 1 diabetes, and her mom Lynn and I are often the ones staying at after-school activities and summer camps, long after other parents are free to leave. Lynn explained to me one day in detail what she needs to do to keep her daughter safe, on an hourly basis, sometimes more, and my jaw dropped in disbelief.
But food allergies are invisible. And they are misunderstood. There is no apparent reason why my child has one; he certainly didn’t ask for one, and neither did the other millions of people who are living with this problem.
What I’d like to accomplish by writing my thoughts here?
As you send your kids back to school you will inevitably encounter kids in similar circumstances, and their parents trying to figure out how to balance their safety and independence, even while the two goals seem to contradict each other.
Less judgement and unsolicited advice.
Food allergies are complicated.
While they share the same name as seasonal allergies,
The realities, if we aren’t careful, are much, much, more than a simple sneeze.
Do you have anyone with food allergies or intolerance in your life? Or any difference, that makes it a little tougher as a parent? Would love to hear your stories and strategies…
Please consider sharing to promote better understanding of Food Allergies, thank you!
Your writing inspires empathy. I can imagine, I think, how hard it would be to have an allergy always waiting in the shadows to strike. How exhausting! Cori and I are very watchful over our kids, not leaving them alone where or when other parents might possibly, but to add all the possible ways to get in trouble with a food allergy, man, that sounds tough. I really feel for you and Tom. I recently saw a BBC documentary called Allergy Planet about the possible causes of the dramatic rise in allergies over the past 100 years. Maybe you’ve seen it? If not, here’s the youtube link:
Bob, thanks so much for reading (I know I’m long-winded!) and speaking up. You and Cori are great–and there are quite a few others in our little community, like our families, always around our kids and the school, and it makes me feel normal at least to not be the only one…..I’m very thankful for that. I haven’t seen this documentary–thank you! I’ll let you know what I think after I watch it.
Probably the best first-person account of this that I’ve read and heard (and not just because the ‘first person’ is my sister!). It’s impossible to ourselves in your place but this is probably about as close as it gets. I think from our point of view, we’ll always follow your lead in this and err on the side of caution. Thanks for writing this!
Ken, I think I’m going to frame this comment–thank you, can’t tell you how much what you just said means to me. Please share and spread the word, because we need all the understanding we can get…..
Robin, well said. I sure understand a lot more than I did before.
thanks Jeff!! that was the intent–to inform so I’m so glad it did. thanks for being such a great supporter of my writing 🙂
Thank you for putting into words how many of us navigating the world of food allergies feel. It is so difficult living in a world where something you eat can kill you rapidly.
Melissa, thanks so much for commenting and sharing…I’m so glad it spoke to you. I don’t talk with my son about the ultimate consequences of eating a peanut, maybe he knows, maybe not, but he does know it’s bad. And it brings out a lot of anxiety. Are you seeing this in your child as well, Or maybe he’s a little young? Sometimes he thinks something in a store is going to reach out and bite him…
Hi Robin. Fantastic account…I agree with Ken. The private school Ira attends in Tokyo doesn’t allow nuts at school or on any of its buses, so I assume there are one or more kids like Brett attending the school, and one or more sets of parents going through the same issues you are facing. Only worse, probably, because I don’t think Japan is as in tune with allergies (or non-mainstream eating habits) as America is. I can only imagine.
I will share this with Ira when I get home tonight…
Brad, that’s interesting to know. That’s great about the buses too. I was thinking about adding the school bus thing in there because I drive Brett every day–the company contracted to drive buses around here will not hold a child’s medicine or be responsible, so if Brett wanted to ride the bus, we would have to get an aid to carry his stuff. I live 6 min down the road so just drive him, But it’s just one of those things. People say, oh, but kids aren’t allowed to eat on the bus. So he should be ok! But then again, what if a kid pulls out a Reese’s peanut butter cup, and the driver won’t do anything? Interesting what you say about Japan not being as up on this as America. Most of the allergy press I read appears to be from Canada and I get the feeling they really have it together on this issue, much more than in the US….we need to take a cue from them. Let me know what Ira thinks about it!
Thank you for writing this. I too get depressed and scared when I read and hear stories about PAs, but as you put it so well ” I don’t want to miss out on making myself a smarter, more-prepared parent.” I will be sure to share your blog with others.
Rosanne, thank you so much! I appreciate you sharing this….can only help right? So glad also by writing this and talking about it, we have found a little group of parents who can discuss these challenges and help ease the parental anxiety at least.
Hi. My daughter has high-functioning autism and celiacs. We’ve always tried to give her as much freedom as possible to achieve everything that she is capable of achieving although sometimes it makes us cringe and we have had many sleepless nights when she is away at training camps or even when she is in school waiting for a call to say that she’s had an autistic meltdown or whatever.
She’s 16 now and just going into 6th form (we’re in the UK) to study Maths, Physics and Chemistry.
She has also represented Team GBR at international events in her sport.
She is the Royal Yachting Association Regional Sailor of the Year 2012 for London and the Thames Valley for her work with our sailing club, especially helping disabled people to sail and her own racing achievements.
She has exceeded everyone’s expectations of her.
It has been incredibly difficult for us to manage her sporting and academic careers but we feel that it is so important not to wrap her in cotton wool as she has to live in today’s world. We won’t be around to protect her for ever so we have to teach her to manage her own life.
You know your own children. Give them the responsibility for themselves as early as they are capable of taking it!
Good luck everyone!
Wow, what an amazing story Jan- Hearing about how well your daughter has done, with hard work and of course, your very scary but strong values helping her along the way. I so needed to hear this type of success story, I”m sure many others do too! Again, thanks so much for sharing….
Robin, I shed a few tears as I read your beautifully written post. Life can sometimes suck for Food Allergy kiddos and their parents, but we have to strive for a healthy balance and outlook. That sure is tough. I try very hard to keep my fears from my William’s ears. He is just four and does not get how dangerous it really is. He starts school in two days, will have to attend full day JK, eat lunch there and carry his Epi. I was one hundred percent for him carrying his Epi until two weeks ago when he injected himself with it. The downside to showing him the trainer Epi I guess. The look of confusion and fear on his face was almost enough for me to quit my job on the spot to keep him safe, at home. But somehow we moved on. I have found that writing about it can help, but there is always the comments from someone just like you mentioned. Do people not get it?
Thank you for sharing your story and Brett’s. I hope that school will continue to be a happy and safe for your young man.♥
Suz, thank you so much for your note and that my words moved you that way… Wow, about your son carrying his own epi!!! And about him injecting himself…at 4…that is a crazy thought. I hope we keep in touch and I’d love to hear how William does at school. I know what you mean though because I did quit my job right before Brett went into Pre-K…..but there has to be an end to how much you can control or give up. I hear about newly diagnosed moms saying they will home-school, and I just hope it never comes to that….I do think kids need the socialization. If I have to, I will…but wow, cross my fingers……
HI Robin, You definitely put my thoughts and feelings to words. My son is 2 1/2 with multiple food allergies and sensitivities. Peanuts and gluten give up the most concern.
We normally shop at a health food store but yesterday I had to go to Walmart with my little guy. We were only in the store for 15 minutes but as I got coffee in the bread isle his face started getting red and a little puffed up. Thankfully we have never needed to use his Epi Pen but he need Benadryl often.
A few months ago we let our son play with playdoh, not realizing it is wheat based, and he got a little puff and his fingers started bleeding.
Like you, most of my allergy info/support is online and it is heartbreaking but necessary to read.
I also have a 4 year old, he is a great advocate for his brother. On a trip to Target the “free sample people” were lining the main isle we walked down. Our 4 year olds would ask, what is that, when they responded “diced peaches and pineapples” he interjected, my brother is allergic to pineapple. Next up were oreos (which he had never seen) my brother is allergic to wheat, then next cheesey treat, we don’t eat cow’s milk.
Thanks for sharing your story.
Holly, thank you so much for your comment and story. Stores really have no idea, do they? It’s so great how your 4-year old is advocating for his little brother…it sounds like you are a great teacher/advocate so far! That’s so interesting about getting coffee in the bread aisle–is that from smelling the gluten that he swelled up? My little guy had an issue at Target once too in the coffee aisle and I’m wondering if it’s the hazelnut or flavored coffee. I definitely avoid it nowadays. I have noticed that grocery stores are a little tough around the holidays too as some of them put out bulk nuts in the Veggie aisle! I wrote to a local store last year about how dangerous that is, and they basically said it wasn’t their problem….:(
I found this article while searching for some kind of site to help me. We were told at a very young age my son was allergic to peanuts, tree nuts, sesame, fish and mangos. we have worked hard over the years to keep him safe and yet feeling normal although it is hard at times. He has been sick a lot lately and is ten now. they redid the allergy tests and he is now also allergic to soy and peas and garlic and maize and strawberries and wheat. I am so lost. The allergist basically said u need to avoid all of these foods and sent us on our way. I am lost trying to find foods for him to eat that are comparable to the other kids at home who have already become peanut free eaters also. I just don’t know who can help me with this
Marci–thank you for stopping by and leaving a note. You really have a ton to avoid. It’s really terrible they didn’t offer you anywhere to go for resources and help! I have found, strangely enough, that I just have to make a lot of things I used to purchase. Now I make my own breads, granola’s, and any baked goods.I use this website to get a lot of ingredients like safe chocolate and seeds and snacks: https://www.allerrific.com/. And have to place big orders before birthday parties and halloween, because nothing in the stores work. Maybe they can help you? I know they mention a lot of food allergy resources on the site too. I have also made sure to join a lot of facebook pages like Kids with Food Allergies and Fare, Peanutallergy.com, and there are so many that keep us informed and give out really great ideas. Just sign up for a few and the rest I think will find you! Sometimes they will answer questions to whatever your child’s challenge is. I don’t think I would have stayed sane, or a very good parent, without all these great resources because there is such a learning curve in dealing with the allergy. I cringe sometimes at the things I didn’t know early on, and know now what risks I didn’t realize I was taking. Good luck Marci, and I hope this helps!
It was the biggest shock to suddenly be thrust into the world of anaphylaxis potential everywhere we turn (almost like a death, in that there is definitely a lot of grieving still going on). Our just-turned-three-year-old boy (my daughter’s only child, my only grandchild, and I care for him when Mom works) had an immediate mouth-throat itching, coughing, vomiting reaction within two minutes of his first exposure to peanuts a few weeks ago – two peanut-butter M&Ms in my living room. He has since been rushed by me to the ER twice, and I had to give him his first Epipen on his third birthday recently. A little side note about that event was that he was screaming and my own adrenalin was flowing as I called 911, and unbelievably, their exact words were, “We cannot come because we have a seizure patient to care for.” Can you imagine hearing this on a 911 call in a city of 8 million people (New York), and you have just given your grandbaby an Epipen? I am 76 years old, have had a 5-artery bypass, etc., but I put him in a stroller and race-walked with him to the ER several blocks away. (The City of New York is presently investigating the 911 operator who said they could not send anyone). Now, my faith in backup (911 help) is greatly shaken, and to add to this, I have also read that many EMTs are not even allowed to carry or administer Epipens! Epipen usage itself is highly muddled, in that there is no consistency as to who can do the injecting in schools, where the Epipen is to be stored, how many, etc. No two schools seem to approach the anaphylactic situation the same way. Some forbid nuts at school, some do not, some have “nut-free” lunch tables, some do not. And it is truly exhausting, just trying to “not annoy” people (including, and often especially, relatives), and still be able to keep one’s own child safe. I really appreciated your article on how you cope, and I so admire the strength and persistence and determination of all the many Moms (Dads and caretakers, as well) who have this awful situation thrust upon them and their precious children. I stay up half the night, reading mothers’ letters on their experiences, and it helps. I was glad to come across your article tonight on the same subject, and I thank you for putting on paper what so many are feeling and might not be able to express. I could write all night about this, and my experiences from just the short time we have had to face this “land-mine” (as one allergist called it) that we must send our children out into daily, but I will end here and just say, thank you for telling how your own life and your little boy’s life are going and how you are handlng outings, school, etc. .I shared your article with my daughter, immediately.
Best of luck and I hope it gets easier for you and all of us. And that our precious little children will stay safe, both physically and mentally from this WICKED allergy!
Ramona, I sent you a direct message earlier but just wanted to reply here too. Thank you so much reading and telling us about your story. Where you are, at the beginning of learning how to cope with this allergy, and figuring out the best way to ensure safety for your grandson, is so confusing and scary. It is later too, but it definitely is at first to even more of a heightened degree. And the Ambulance story is just unbelievable…thank goodness, even with your 76 years and your by-pass, you must be in pretty good shape to do what you did and to get your grandson to safety in time! Do know how lucky they are to have you in their lives, researching and intimately learning how to best handle the situation. It’s very hard, and most people, beyond the parent still don’t get the complex set of precautions we all need to take. Thanks for following and again, for reaching out…
You know how much I feel your pain. It’s not much comfort, but knowing there are other mothers who get how hard it is…whose hearts break wishing their kids could have more normal lives…whose fear runs deep…I guess it makes me feel less alone. Hugs, hoping for an uneventful school year and a cure.
Thank you Jen. I hopped over to your blog (in an effort to get my mind off peanuts) and my, what an interesting and probably difficult-at-times life you are living! I hope the chlidren are adjusting to and enjoying Israel. I will keep you in my thoughts and good wishes and yes, how super-fantastic it would be to find a cure for allergies. And selfishly, I hope the one for peanut allergy is at the top of the list! I have recently read two books by Mt. Sinai allergist (and Chief of Staff of Pediatric Allergies), Dr. Scott H. Sicherer and maybe you have read him already, but if not, I will be happy to send you one of his books if you cannot find them there and want to read one. They are doing a tremendous amount of research there, and he is very good and especially in talking directly to parents, or in my case, a very involved grandparent. Take good care, and I will be following your blog–and definitely have ice-cream making on my mind now that our Zeke cannot eat commercially prepared ice cream.
Hi Ramona. Thanks for visiting my blog. We were very lucky to be patients of the doctors at mt. Sinai for a while when we lived in NJ, before moving to Israel. I’ve heard Dr. Sicherer speak, and my son actually got to participate in a peanut allergy study when he was 6. All he had to do was donate blood during a routine visit, but he was brave and excited to be part of the research for a cure. 🙂
Jen, thanks so much for reading and for your note.Thank goodness for the web to bring so many of us together, from miles away, to learn from each others experiences. It’s invaluable. There are very few people to talk to about it here, living in such a small community. And of course, I don’t like talking about it that much anyway because it can be all-consuming….now that I got this subject off my chest I need to go think of something fluffy and light-hearted to write about next 🙂 And yes….a cure!!! I heard cars are going to be driving for us in a few years–surely they should be able to develop a nut allergy cure in a few as well I would think??
I work in high tech, and specifically work with medical device companies. Normally I am not a big supporter of biotech or pharma, and it’s not something the company i work for invests in typically, but I do occasionally nudge the people in charge of new projects to look more into food allergy innovation. Hopefully one day they will listen. I’m amazed at some of the innovative technologies people come up with…all it takes is one motivated parent or physician. Maybe even me…
Thank you for sharing. Sometimes as a parent of an allergy child you feel so alone! My own family doesn’t even get it. Our school is great but it isn’t nut free, unfortunately. I wish all schools would become nut free. I don’t think other parents understand our fears sending the kids off to school, hoping they don’t encounter any nuts.
Jenn, thanks so much for reading and for your note! I know what you mean, if only they can walk a mile or 2 in our shoes! I’m figuring the more people we tell though, perhaps more people can learn. I know when my son was first diagnosed, there was a huge learning curve! And still, reading the news, we learn more and more each day, better ways to handle tricky situations. I still wonder if I’ll ever trust more than one or 2 people with my child…I hope someday!
As a parent of a child with a peanut and tree nut allergy, I am grateful. I know your pain. I understand your frustration with those who are always frustrated with you asking to read labels, bring separate snacks, etc… I always get the “overly cautious and over-bearing mom” looks…. Thank you for this blog. I am lucky to have a “nut- free” school, but still there are parents that bring snacks for birthday’s and what not and don’t know how to really read a label. Just because it doesn’t have nuts in it, doesn’t always mean it’s safe. I also have family members that still, without thinking will buy cookies and snacks for my kids when out… people who don’t have to deal 24/7 don’t completely “get it”. It is hard to ask for people to just be kind and trust our judgement. : ) Blessings.
Charisa, thanks so much for your great comment. Definitely hear you! I thought my mom knew and then she cooked something with walnuts in it the last time I saw her and I was thinking what are you thinking? Even my husband the other day bought Almond extract for a recipe and I looked at him in disbelief—my son has a peanut allergy but we are told to be nut free, so I keep him away from tree nuts too. I wonder, for my hubby, seriously, what’s an almond? What part of “nut free household” do you not understand?? It’s so hard policing all of this ourselves…but then you worry so much about them getting older and policing themselves…
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