It Takes A Village To Raise A Child With Food Allergies – Thank You For Keeping Our Kids Safe Even When You Don’t Understand Allergies

It Takes A Village To Raise A Child With Food Allergies - Thank You For Keeping Our Kids Safe Even When You Don't Understand Allergies

During a recent grocery store trip, I overheard a fellow mom on her cell phone. She was asking what on earth to buy in the bakery section for her child’s class room birthday treat. It needed to be peanut free.

She went on to say she didn’t understand why, if peanut wasn’t on the label, she couldn’t buy it. Then she mumbled something about the equipment.

I could tell she was in a hurry. Intending to point her in the right direction, I made my way to the display of Lofthouse Nut-Free frosted cookies. I planned to hold them up and just point to the ‘Nut-Free’ label. I didn’t want to interrupt her conversation but knew it can be hard to find a peanut-safe option in the bakery section – especially if you aren’t sure what to look for on the label. It would be easy to unknowingly buy a treat that isn’t safe.

Or maybe just give up.

As I walked up, she released a loud sigh of frustration and exclaimed into the phone, Why can’t those kids just be normal so I can buy a box of cupcakes“. 

Sigh. Normal? Ugh.

Now what?

I felt my face flush. What ran through my head was to educate her – you know, with strong, emotion-filled, angry words. 

But I could see that type of ‘education’ would not do either of us much good. She was already frustrated, and heaping my anger on top of her anger isn’t likely to produce much understanding.

I’m also not real keen on starting an argument in the bakery section of the grocery store. With my kids.

Plus, here she was, trying to read the labels, and trying to pick something all the kids could enjoy. Despite what she said, her actions were those of someone trying to do the right thing. 

She just didn’t understand why.

She didn’t need anger, she needed grace. So instead of marching up with a lengthy defense of children with food allergies, I walked up, smiled, and pointed at the Nut-Free label. She looked, paused and looked up at me.

Relief. Gratitude.

She told her friend ‘just a minute’ and put her hand over the phone. She whispered ‘Thank you. I have no idea how to make sure what I buy is right or not. Last time it wasn’t. They wouldn’t serve it in class and my daughter didn’t have a treat for her birthday‘.

Wow.

As a food allergy mom, I know all-too-well the disappointment when my child can’t have a treat. This might be the first time I realized it also happens to children without food allergies.

I see how this could cause frustration in parents whose children don’t have an allergy.

Sometimes, as an allergy mom, I just wish other parents could put themselves in my shoes – maybe they’d finally understand what its like.

This time, I put myself in her shoes. There was a time when I knew very little about food allergies and food allergy labeling – before I became an Epi-Pen carrying mom and had to take a crash course in keeping our own child safe. If I had gone to the store with good intentions, it would frustrate me if I still bought the wrong thing. Food labeling even confuses food allergy parents sometimes. If I tried to buy something safe for all the children, I’d be so hurt to hear they didn’t serve it because it still wasn’t safe.

Yeah, that would make me pretty upset. And it would make me easily frustrated the next time I’m in a store, again, trying to do the right thing. Especially if I’m still not sure what to actually buy.

So, as she looked up at me, I smiled back and nodded. I whispered that the frosted Lofthouse cookies that say Nut-Free are always a safe option.

And then I said, Thank you for doing your best to keep children like mine safe.

She smiled back, and then looked slightly embarrassed, probably realizing I overheard her comment. But I chose to give her an encouraging smile, a little wave, and move on.

This encounter wasn’t about me. Or my child. It was about simply doing something small to educate another mom who was actively seeking a way to keep other children safe while giving her child a special birthday. Now she knows a safe option for the future. And she has been thanked by one allergy mom for her efforts.

Are you one of the parents out there who try their best to keep all the kids safe?

Thank you, to each of you, who don’t understand food allergies, but try to buy safe options anyway.

Thank you for trying to learn about food labeling, and for asking questions about what to buy. If you ever have questions about what to buy (or why it matters), I’m happy to help.

Thank you for taking time out of your day to make your best effort with good intentions.

I’m sorry when those good intentions have not been rewarded. Please know they are appreciated nonetheless. 

Thank you for doing your best to keep all of our kids safe. We will happily do the same for you in whatever challenge your child or family may face now and in the future.

As I’ve shared before, it truly does take a village to raise a child with food allergies.

Thank you for doing your best – from this grateful mama to you.

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A Ballerina 3 Year Old Birthday: A Homemade Ballerina Birthday Cake

Our 3 year old girl loves to twirl. I think she spends a quarter of her day spinning.

So, when she saw one video of a ballerina, she was hooked. This made it no surprise that she wanted a ballerina birthday cake.

Order one, right? Wrong. We have food allergies in our family and have trouble finding a bakery that guarantees a peanut and tree nut free cake.

This ballerina cake needed to be homemade – a tall order.

Baking is not my strong suit. But I’ve been making an effort to learn and develop the skill because baking safe birthday cakes will be my job for years to come.

After much research, I decided to make this chocolate cheesecake layer cake from Recipe Girl. The recipe was well written, easy to follow, and the cake is delicious!

The recipe was modified to fit our needs as follows:

  • Line the pan with Parchment Paper: After reading reviews of how to ensure each layer of cake releases easily from the pan, each pan was lined with parchment paper. Not only did it work well, it was less messy than greasing and flouring the pans.
    • To line with parchment paper, spray the pan with cooking spray (I used PAM), then trace and cut out a circle of parchment paper to place in the pan. Finally, spray the top of the paper with cooking spray.
  • Freeze all layers: Due to time constraints, all cake and cheesecake layers were baked 3 days in advance and frozen.
    • Once cool, wrap each layer individually in a double layer of plastic wrap followed by one layer of tin foil. Place them in a freezer bag and store in the freezer until ready to assemble the cake. NOTE: To avoid freezer burn, don’t freeze in a frost-free freezer (that heats and cools to remove frost). I used our chest freezer.
  • Use a decorator cream cheese frosting: Instead of the recipe’s chocolate sour cream frosting, this cake was decorated with this fantastic crusting cream cheese, butter cream frosting. With so much chocolate, the cake is plenty rich so skipping the chocolate was ok. Plus, decorating with sour cream frosting won’t work – the designs will just melt away. This cream cheese frosting is great for decorating a ‘girlie’ cake.
    • FYI – my hand mixer started smoking and died while mixing the frosting – it gets thick before it is thinned out! My off-brand mixer wasn’t a very good one. I sprung for the Kitchen Aid hand mixer because it happened to be 20% off and similar in price to the one I had before. I was amazed by how much better it worked. If you feel like YOU are doing all the work when mixing this stuff, I recommend borrowing or buying a better hand mixer (or use a stand mixer). Your arms will thank you and it will cut the prep time in half.
  • Assemble with frozen layers: Handling frozen layers is a cinch – they stack easily without crumbling, frosting is easy to spread, and the cake turns out super moist.
  • Decorate with rosettes: After watching this Cake Trend video, I was able to decorate the cake with rosettes. The process was really forgiving! When things don’t look perfect, you can cover the edges with the next rosette. And because this cake used only one color, it was easy to blend and fill any gaps after finishing.
    • This cake was assembled and decorated one day before the party and stored in an airtight container overnight in the fridge.

Rosette cake

Now, didn’t I say she asked for a ballerina cake? Well, drawing a ballerina with frosting is simply beyond my skill level, so I needed something to stick in the cake.

I bought two sheets of glittery cardstock from JoAnn Fabrics (one gold, one pink). Then I traced and cut out ballerina figures. Each figure was taped to a wood skewer and stuck in the cake the day of the party.

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I think she liked it and it was delicious!

Trust me, if I can make it, so can you!

 

It Takes a Village {to Raise a Child With Food Allergies}…And This One’s Fantastic

It Takes a Village To Raise A Child With Food Allergies | thisgratefulmama.com

Allergy parenting requires effort, practice, persistence and vigilance.

And like many parenting challenges, allergy parenting isn’t always an easy job.

Sometimes it is a lonely job – sometimes the combination of ‘what ifs’, label reading and substitute-treat-making can weigh us down and consume our thoughts and time.

But this IS a rewarding job.

A smiling child eating a nut-free cupcake with his friends at a birthday party makes that late night baking worth it.

And even the opposite – a child, disappointed they can’t enjoy a treat but safe from a life threatening reaction. Challenging, but STILL worth it. Every day our children stay safe is a reward in itself. A job well done. Prayers answered.

We are not alone in this. And, we allergy parents are not the only parents striving to keep our children safe from potential harm, whatever it may be.

Having a peanut and tree nut allergic child has opened my eyes to the great lengths those in our community will go to in order to protect just one child. Often, attention goes to those who refuse to accommodate an allergy – but in my experience those who take such a stance are few. 

In reality, most people in this community strive to protect any, and every child.

My child.

Your child.

In our community, examples of people who have gone above and beyond to protect our son are endless and often leave me choked up just thinking about them.Today the attention goes to those who DO extraordinary things, sometimes daily for our son and other children:

  • When my mother-in-law calls me from the store to read ingredient labels and confirm what she buys is safe
  • My mom often takes extra time to make homemade cobbler instead of buying a pie, even when she’s busy
  • My sister does the hair of a baker and trades for magnificent, delicious, professionally made nut-free cakes
  • Friends call ahead to confirm safety of snacks and meals before they come over or we go there
  • Parents help their children wash their hands after they’ve eaten a snack when playing with our kids
  • The preschool director and teachers enforce a nut-free food rule for the program
  • Volunteers and staff from church text questions about safe snacks
  • Grandparents, aunts, uncles, cousins and friends have learned how to use an Epi-pen and how to read food labels
  • Caregivers listen attentively and read and follow allergy action plans
  • We are included time and time again, even though for many, accommodating us takes some extra effort
  • Friends and neighbors check in before potlucks to tell us what they are bringing is safe for our son – and often point out items they know are not safe to keep me informed
  • A neighbor and daughter with nut allergies looking out for our son, sharing their experiences, doctor recommendations and encouragement
  • Last year we asked our church to pray for our son’s safety and for healing from his allergy. Our prayer note card was returned a year later, signed with dates and names of those who prayed all year long
  • Restaurant managers and chefs patiently answer questions and prepare food safely for our son
  • Friends and family spend time researching safe products on their own
  • People graciously allow me to hang out in their kitchen, reading every food label in sight and asking 20 questions
  • Members of the No Nuts Mom Group (and No Nuts Mom Group of MN) share their experiences and provide invaluable recommendations, advice, prayers, and encouragement – if you are a food allergy parent and NOT part of at least one of these groups, you should really check them out!
  • A neighbor texts me from Target with a picture of a new ‘nut-free’ product
  • And on…and on…

These are examples we have been TOLD about. I am certain there are efforts done silently – without recognition. People spend extra time grocery shopping, doing their own research, and asking questions on behalf of our son.

Family, friends, neighbors, children, parents, educators, church staff and more…I recognize YOUR efforts. YOUR hearts and actions demonstrate love and service to our whole family as we all work to protect children. And you do so willingly and intentionally. With joy – without expressing burden.

Often, steps taken by others to protect our son take me by surprise – unexpected gifts of protection we didn’t ask for but gratefully receive.

But mere words can not adequately express my gratitude. Most days, I find myself gratefully praying blessings over those in our life who have gone out of their way to bless us and to protect our son. Often I am at a loss for words, sitting quietly in the peace of knowing that God knows just how grateful I am even if I can’t adequately express it – grateful to others, grateful to God, grateful beyond grateful.

They say it takes a village to raise a child – it certainly takes a village to keep an allergy child safe.

To all those who keep our child safe – Thank you. Your kindness, thoughtfulness, and efforts often stop me in my tracks. I joyfully thank God for each of you. Even the tiniest gesture means the world to us. You are actively invested in our son’s well-being and your individual and collective efforts matter.

I pray for chances to bless you and your family as you have us. If your family ever faces a challenge and needs a special accommodation, we are happy and ready to help – to go above and beyond as you have for us.

I am grateful for each of you who invest in keeping our child and others in our community safe.

It does take a village.

And from where I sit, THIS village is fantastic.

Thank you.

I am THAT Allergy Mama – Ice Cream Truck Ignorance Is Bliss

ICE CREAM TRUCK

As our son was standing at the window yesterday I heard him exclaim, “Mom! There’s a short moving van driving in circles. And it plays MUSIC!

Over and over, it drove by our house, announced by its cheery songs.

It triggered memories of childhood joy upon picking a treat from a similar mobile merry-maker. What child isn’t excited to hear the ice cream truck? Longing to share such summer joy with our children, I briefly considered running barefoot to flag him down.

I placed my hand on the door knob only to be stopped by a mind filled by an urgent stream of questions.

Food allergies sometimes throw a monkey-wrench in spontaneity.

How many of those treats contain nuts? How many are cross-contaminated? How many have original manufacturer labeling? Does the driver know these answers?  If not, is it OK for me to make a phone call to a manufacturer while he waits for me to buy a popsicle for $1?

What if I blow our son’s mind by telling him the ‘van’ is an ice cream truck and then have to him he can’t eat anything on it?

Sigh.

I just couldn’t take the chance of squashing his joy. Going home and giving him the band aid of a ‘safe’ popsicle from our freezer just wouldn’t have been good enough.

Suddenly it was a relief that he doesn’t know what that so-called ‘musical moving van’ is really up to.

Today I didn’t have to explain to him why we could not buy those treats. It was a blessing that he did not see excited children lining up enjoy ice-cold goodness.

This ice cream truck innocence will not last forever. The odds of the truck rolling through our neighborhood again without delighted children spilling-the-beans seems slim. I’m sure next time we won’t be so lucky and our son will discover its true purpose.

I know his eyes will widen with wonder and eager delight – it is very important to me that I not have to tell him we can’t eat anything on it because we already avoid so much.

SO, I decided to be prepared before the its inevitable return. Planning ahead is an allergy mama’s most powerful and necessary tool – joyful childhood memories depend on it. As our children marveled at the music, I scribbled down the name of the company and its phone number (helpfully displayed on the side of the truck). I found the business online will call them in the morning to pepper someone other than the ice cream truck driver with allergy-related questions.

Assuming something is safe (nut-free), I cannot wait to introduce our children to the ice cream truck. And yes, I’m prepared to deal with crying when the truck goes by and we decide not to participate for reasons other than food allergies (already had a treat, no cash, haven’t eaten dinner yet).

Today, our children’s ice cream truck ignorance was bliss for me.

Next time, equipped with allergen info, the revelation of the ice cream truck’s true identity will be bliss for our children.

The ‘A’-Word

Sitting in the doctor’s office for the third time this month with a coughing, wheezing child, again, yet another doctor uttered the dreaded ‘A’-word (don’t worry, you won’t find profanity here – this is a more difficult word for this mama to stomach).

Asthma.

With every mention, the likelihood of asthma becoming our reality increases.

We already deal with that other ‘A’-word (allergy) and all the paperwork, medications, food precautions and disappointments that come with it. Our son handles it well but I have been hoping and praying against another health issue requiring a medical action plan.

Each wheezing trip to the doctor yields increased medication and building concern over an escalating problem we do not yet have under control. A problem none of us fully comprehend.

The word ‘asthma’ initially triggered a knee-jerk parental response filled with worry, emotion, and denial. Why? Perhaps because naming it means acknowledging a real problem that may be here to stay. Or because I long for him to be healthy and care-free. We are already equipped with an Epi-Pen, Benadryl and managing safety of every single bite…isn’t that enough for one little person (and his mama) to handle?

I just don’t want him to have asthma. I want him to run, play and climb and do not want good activities and exercise to trigger wheezing.

I just don’t want him to need an inhaler or nebulizer. And I certainly abhor the thought of him ever having a full-blown asthma attack (on a side note – if your doctor mentions asthma, DO NOT immediately google ‘asthma attack’ YouTube videos. Trust me, you need to be prepared to watch that. Scary stuff).

Like allergies, asthma is simply out of my control. I can’t stop it. It can be managed, but it is hard to stomach that I can’t fix it. Doesn’t every mama want to just fix it? Sigh. I hate feeling so helpless!

But my helplessness forces me to drop to my knees in prayer for healing, answers and a solution. It reminds me that my God is faithful – but His ways do not always conform to my plans.

Asthma is not my plan. But weeks of prayer have revealed that asthma may be in God’s plan for our son. I don’t know why, but trust that God will walk with (or carry) us.

Like it or not, asthma is an answer. Treating asthma is a solution – just not the one I wanted.

I can already see good from ‘asthma’ on his medical chart. We already see a more streamlined response at the doctor. His oxygen levels are now assessed right away. As long as within acceptable values, we wait in line like everyone else. If in danger, I have no doubt he will be treated immediately. The doctors ask us pointed questions, address our questions thoroughly, and explain next steps. They gave a ‘tentative’ asthma action plan so we can be proactive until we see the specialist in June. With each appointment, I arrive defeated but leave better equipped and more informed. I am increasingly grateful for the team of professionals helping him be as healthy as possible.

I have proudly watched this brave, grateful child thrive as his character is strengthened even as he gasps for air.

As he sits, coughing excessively into the nebulizer mask, the resilience and hope in his eyes literally steals my breath. He doesn’t hear the word ‘asthma’ and shrink back. He listens, wanting to know more. I’m amazed at how much he understands!

DSC_0840 (2)

The word asthma means nothing to him, except that it potentially gives his coughing a name – a name that means a plan, treatment and a chance to feel better. Our little man is a trooper. He hopes and trusts without reservation and does not dwell in useless self-pity.

He rarely protests his two (now) three treatments of asthma maintenance medication even though he has to stop playing and sit still with an uncomfortable mask on his face for 30 minutes. He knows when he needs albuterol and asks for it before I can offer. His attitude teaches his mama that the mere word, ‘asthma’, isn’t all-powerful or all-condemning.

So wise at just four and a half.

I’ve given this word far too much credit. We are already dealing with the symptoms, no matter what we call it. We were helpless as he coughed so hard he vomited, only to continue without relief. Now, we use the nebulizer and gratefully pray over him as we he peacefully falls back asleep. We are increasingly educated to know when he needs more help.

I may not want him to need the nebulizer, but I am grateful for it. We are no longer fighting a nameless issue without proper tools. 

Even a troubling diagnosis is far better than being ill-equipped.

Waiting for the specialist, I am increasingly prepared for the outcome. Regardless of whether his chart says ‘asthma’ or not, we will continue to receive invaluable advice, instructions and tools so he can feel his best.

I still do not want him to have asthma, but I see how diagnosis ensures streamlined, proper care. I appreciate how an asthma plan can help us do what we can to prevent an asthma attack and treat symptoms. I recognize how this struggle is increasing my trust and dependence on God as I surrender, admitting it is out of my hands. I know my peace (or lack thereof) will teach our son more about what walking with God is really about than any Sunday School lesson. I will choose to focus on God instead of some medical term.

Most importantly, I see how God is lovingly building our son’s character with perseverance, hope, gratitude, and responsibility. I believe God will use this struggle for good (He already is).

I’m not ready to embrace it, but it might be time to quit treating a mere word as my enemy and call it what this probably is…

Asthma.

Here we (probably) go.

On Peanut Allergy and LEAP – Why The Conflicting Emotions Among Allergy Parents?

I have been anticipating the LEAP study findings since hearing it was in progress almost 3 years ago. Our son was diagnosed with a peanut and cashew allergy in 2012. In the initial shock of the diagnosis, I started looking for any answers I could find.

WHY did he have this allergy, and what could we have done differently? Was it my fault for eating my body weight in peanuts while pregnant? What about while nursing? Was he too exposed? Underexposed?

When I stumbled across it, I was disappointed that the findings had not yet been published. If you aren’t familiar with the study, visiting the About LEAP page will explain the design better than I can. In general, the LEAP study looks to answer the question of whether avoidance of nuts or consumption of nuts at an early age makes a person more or less likely to develop a peanut allergy.

The site has been bookmarked on my computer since 2012. I’ve checked back often to see if there was any indication of when they would publish their findings. Results were expected as early as 2013, but it wasn’t until February 2015 when results were released.

I’m not the only one who anticipated the study, as is evidenced by the intense media coverage it is receiving in the wake of its release.

When the results were released, I read them with anticipation and excitement. You could check out the summary of results on the LEAP website but I would recommend reading the New England Journal of Medicine article for yourself. All children included in the study were classified as high-risk for a peanut allergy if they had an existing egg allergy and/or severe eczema, and no strong preexisting peanut allergy (strong was evidenced by a skin wheel (or hive) from skin testing larger than 4 mm).

In the LEAP study, of 834 potential participants, 76 had wheels over 4 mm before the study began and were excluded. This means these children were 4 to 11 months of age and already had significant allergy (See Figure 1 – Methods section of the journal article). 76 may sound like not very many, but is close to 10%, albeit from a high risk group of children sought out for inclusion in the study. Groundbreaking study or not, LEAP may be of little help to parents whose children are high-risk for an allergy and developed a strong peanut allergy before they were 4-11 months of ageWhile we embrace that knowledge about peanut allergies is increasing, we are still waiting on and longing for answers as to why these children are at such high risk in the first place.

But there is certainly valuable and solid information here for those children who are not highly allergic before the age of 4 months.

As summarized on the LEAP website, the study yielded these exciting results:

Of the children who avoided peanut, 17% developed peanut allergy by the age of 5 years. Remarkably, only 3% of the children who were randomized to eating the peanut snack developed allergy by age 5.   Therefore, in high-risk infants, sustained consumption of peanut beginning in the first 11 months of life was highly effective in preventing the development of peanut allergy.

A difference of 14% of children developing or not developing an allergy is significant. It means if your child doesn’t already have a strong early onset allergy, but is at risk of developing one, giving them peanut products at an early age may (no guarantees) help prevent an allergy. And, if they have a minor allergy (wheel less than 4mm), they may still be helped by feeding them nuts, although would require supervision and care of a medical professional.

Results like these give parents something they CAN do to help their high risk child. To give them their best shot. There is no mistaking that the results hold very important truth and tangible results for the right circumstances.

It is going to change the recommendations. It is paving the way for further study as we speak. A biochemist by training, MORE information is always a good thing, right?

Not necessarily.

The study leaves me with conflicting emotions. I feel like I’ve been on a roller coaster all week.

When you look at the allergy community, the study has received acclaim, praise, frustration, and resistance.

Why so emotional?

  • Too little too late: Information is power, but now my daughter is 2 and has never eaten a peanut. We are a peanut free household. Our allergist told us she has a higher chance of developing a peanut allergy than other children because of our son’s allergy (a.k.a. our family genes). We were told to use caution introducing peanuts. When I asked if it was OK to wait until her 2nd birthday, there was no indication it was a bad idea. According to this study, we may have now waited one year too long to do the only thing that has been shown to possibly prevent development of a peanut allergy. So, although the study is relevant, groundbreaking even, the findings may not be able to help her. Yet…we pray she may never develop a peanut allergy.
  • We may be resistant: Defensive even. Information published on the internet can be simply false, or taken out of context. The first statement I saw did not mention the LEAP study name, but stated that we should ALL feed peanuts to 4 month old infants to prevent peanut allergy. It was out-of-context and missing important cautions and caveats. Alarming – and dangerous. The post left me feeling skeptical and defensive. It is my duty to read information for myself, and to draw educated conclusions with an open mind. It would be a grievous error to rely on someone else’s write-up, emotions, or opinion. We should be excited that people are spending their time studying peanut allergy and to read their findings, whatever they are. When I actually read the entire LEAP study, I agreed that this study is impressive, important, and demonstrates something we didn’t already know about peanut allergies. It is nothing to scoff at and needs to be taken seriously. But it needs to be viewed and written about within the proper context.
  • We feel attacked:  There are some who think we caused our children’s allergies and aren’t afraid to share it all over the internet.  I read this article and it describes very well how parents can be bullies too and requests empathy – it is well worth your time to read. But  the LEAP study does not say parents are to blame. It says feeding children peanuts early may help, but it will not help all of them. There is no way to go back and see which child would or would not develop an allergy. And guess what? Many of the children in the allergy community had life-threatening reactions before 4 months. Their faces swelled up and maybe they stopped breathing after being kissed by peanut-butter tainted lips. Many children had severe eczema, or reactions to breast milk after their mother ate peanuts.
  • We feel guilty: Although the LEAP study does not point blame, we blame ourselves. We cannot help it. Finding out now that feeding our children nuts at an earlier age could have even POSSIBLY prevented our child’s peanut allergy brings a disturbing and painful pang of mama-guilt. It feels awful, warranted or not. No one else needs to point a finger at us because we’ve had it pointing at ourselves since day one. We wondered if those nuts we ate (or didn’t eat) while pregnant made this happen. We wondered what we did wrong and have assumed we did something wrong.
  • We are frustrated: The LEAP findings contradict how I and many other parents fed our children at early ages. We followed recommendations of trusted allergists and pediatricians. Many of us were aware of food allergy dangers and consulted reputable sources like the American Academy of Pediatrics and American Academy of Asthma and Allergy. Avoidance was recommended in 2000. Recommendations were slightly modified in 2008 and furthermore in 2013, but that doesn’t mean all pediatricians and allergists were on board. Infant nutrition and care books were not up to date. We did research these things, but just didn’t know what we and the medical community did not yet know.
  • We have questions: While some answers have come to light, 100s more have popped up in their place. There is much left to learn, and we don’t fully understand what this all means yet. The LEAP study is great, but long term effects are yet unknown (awesome that they are continuing follow up in the LEAP-ON study as we speak).
  • We are grateful: In wake of the amazing developments of potential therapies like the Viaskin(R) peanut patch, the LEAP study findings, and more, science is making huge advancements in understanding how to help the allergy community. We are grateful. We are grateful for parents and children in the clinical trials and studies. We are grateful for those investing their time, careers, and funding. The knowledge is increasing, and the understanding being gained is invaluable. It is bound to change the allergy world forever. And soon. Thank you.
  • We are hopeful: Even if the LEAP study shows results that are too late for many of us to use the information, those having babies now will benefit. We hope allergy rates will go down. We don’t want ANY child to have a food allergy, even if our child does already. We hope the therapies will be effecive. We hope for science to find answers, causes, and cures. We anticipate these things and cling to hope for tools that will change our children’s lives.
  • We are forgiving: We are also frustrated that with all the new findings, there is still no concrete way to prevent infant peanut (and other) allergy. For many of us, even if we’d known and fed our child peanuts at 4 months, it may not have changed anything. We accept where we are now, where we’ve been, and instead of pointing fingers we look forward to future advancements. We forgive ourselves for our part as we forgive the medical community who is learning about allergies with new revelations, just as we are. And, we choose to forgive the community of ignorant people who feel the need to blame us.

 

It is important to note that not everyone within the allergy community has these feelings. But the care of our children and loved ones, and their safety is so important, that emotions are bound to run high. If it seems like some of us are conflicted, we are.

I am.

Fear Rises…

Fear

On November 26, 2014, a young man named Chandler Swink died after suffering a severe allergic reaction to peanuts. I wrote this article that day. I waited to post this because I didn’t feel right discussing my fears as if they were as important as this man’s death. They aren’t; my fears are nothing in comparison to what he, his family and friends have gone through, and what so many other families have gone through when a loved one is lost due to a food allergy.   

To the family of Chandler Swink: My heart is broken over your loss. I have thought of and prayed for you often since I read your story and will continue to do so. I am praying for your comfort, for you to find peace, and that God and your loved ones will carry you through the difficult days and years to come.  I pray that the memories of your son will be vivid and will bring you joy and solace through your pain. I thank you for speaking out about your family’s experience with food allergies and for advocating for other children. 

From November 26, 2014.

Today was just a normal day. I woke up and spent time reading my bible, praying and journaling in the warmth of my bed. I felt great.

A quick shower, and the kids were awake. I spent some time snuggling with my 4-year-old, talking about what we to do today, and we prayed to start our day. By now, we could hear my daughter squealing and playing in her room. We cracked the door open and peaked in to find her jumping up and down in her crib, giggling as we entered. As always, she was ready to go and full of joy.

Thanksgiving on the way, these sweeties to spend the day with…I went downstairs with smiling kids, and an even bigger smile oozing off my face. Today would be a good day.

I served breakfast and sat down with a piping hot cup of coffee to check my email before heading out to run errands. Nothing important in my email and the kids were still eating so I opened Facebook and started to scroll down the news feed.

The second post stopped me in my tracks. I spilled that hot coffee on my hand. It burned, but my reaction to the coffee was nothing compared to what I read.

A college student in a coma from an allergic reaction for a week. A grim outlook. It didn’t even sound like he’d eaten a nut.  A contact reaction. Later that day, I’d read of his death.

I can’t adequately describe the tightness in my chest and the intensity  and loudness of my heart throbbing wildly I looked across the room our son.

Innocently eating breakfast, giggling with his sister. All smiles and silliness with a mouth full of cereal.

My eyes welled up with tears instantly, and I walked out of the room. I tried to compose myself. This news was much too heavy for a 4-year-old to bear and he doesn’t need to see me cry. When he is older, perhaps I will let him see my tears over these stories, but for now, I spare him.

It saddens me that this is not the first or last time that I will read news like this. To say my world is turned upside down is an understatement. It releases fears that I usually give to God and move on from. But today…

The fear rises…

Welling up with a ferocity and power I can’t control. I suddenly find myself paralyzed by fear and subject to my own terrifying daydreams of my worst fears. My mind wanders to places it shouldn’t be allowed to go. Thinking horrible and terrifying things, down a rabbit hole I go…The story of a child being harmed or dying is enough to make ANY parent find heart stopping dread in the possibility of what could happen to their own child.

News of severe and fatal allergic reactions occurs too often and reduces me to tears and heart seizing fears almost every time. It wasn’t even a month ago when I was reading about another child who had a fatal reaction on Halloween. I don’t think they ever learned what caused the reaction to occur. It shook me then, and now, again, it shakes me today. But deeper. Building on the knowledge that this isn’t a one-time news story. These deaths are too frequent. Too real. They make me realize our own frailty, and to fear this outcome for my son who has a peanut and tree nut allergy.

These death are accidents that happen to vigilant and responsible people. It is not carelessness. They are doing everything they can to protect themselves and their loved ones from allergic reactions. Then suddenly, an unforeseen, unplanned interaction with an allergen, and suddenly what should have been a normal day becomes deadly.

On what started as a normal day for me, I suddenly find myself trembling, my white knuckled fist clutching a tissue as I struggle to catch my breath. I desperately plead with God to not only save this young man and comfort his loved ones, but also to protect my own child. And to help me simply continue on with the day and enjoy my children who are here with me now, safe and sound.

I’m sure this child and his loved ones started that fateful day just as simply as I began my own. Unassuming. Hopeful. Joyful. Unaware that it would be the last day he would ever wake. As parents of children with food allergies, we always have that nagging voice that reminds us to keep them safe. But most of the time, I don’t wake thinking that today will be the day that a reaction occurs; that this could be it. We don’t think about how even if we do everything right that a reaction could occur and that an Epi-Pen may not save them. We can’t thrive if we spend all of our moments like that. But it could be a reality we may face, any day.

Too often, I find myself soothing my fears with the Epi-Pen. Not good. News like this reminds me that an Epi-Pen isn’t a cure. It’s not a security blanket. It surely gives them a fighting chance, but for a severe reaction, sometimes it is no more than a Hail-Mary.

It. Might. Not. Work. There are no guarantees.

These stories. These deaths. These children and broken-hearted families. We stand with them. We know these families are living the truth that we often want to forget and that society doesn’t always understand or acknowledge. Proof that food allergies can be deadly. Proof that deadly reactions do happen to responsible children and adults. Proof that food allergies are not just a nuisance we live with. They are a real, powerful reality that requires vigilance at ALL times.

Food allergies require empathy and help from the community. This particular story followed news of a school administrator who made light of food allergies, and of parents and community members who thought she was actually funny. She rightly paid for her comments with her job, but these children and families pay with a life. A precious life. There are no appropriate jokes when it comes to this.

All these thoughts swirling…I found myself this morning, and again this afternoon in our downstairs bathroom, sobbing. Stifling the sound so the kids wouldn’t hear me. I’m not sure I can explain this to my 4-year-old today but I know the day is approaching when we will have to. So here I am. Broken. Helpless. Fearful. Sucking air.

The burden is heavy. And much too real. I wish he didn’t have a food allergy. But he does. And we must go on. I cannot stay in the bathroom all day weeping. I will not squander the moments I have with these kids wallowing in fear. I can’t prevent the fear or the unknown, but I do have control over my own actions.

SO I pull myself together and focus on what I can do:

  • Keep going: I wipe my eyes and compose myself and open the bathroom door. I put one foot in front of the other, pull myself up, and move forward. I continue to love and parent our children. They are a gift, not to be squandered.
  • Pray: I pray for all allergic children to be protected. I pray for a treatment that would be effective when Epi-Pens are not. I pray for answers to why allergies are affecting kids with increasing frequency and for a way to stop it. I pray that these deaths would cease and that no more would be lost due to FOOD; eaten or touched. I pray that my son will NEVER have a life-threatening reaction.
  • Trust: I do the only thing I can do in moments like this. I put my faith in the Lord and remember that He has given me these children to raise and care for. I remember that He is Lord and He is sovereign and faithful. I pray that God would help me trust Him to protect our son because trust doesn’t come naturally. I believe that no matter what, God will see us through whatever happens. I trust in His promises in scripture to give us rest and peace:
    •  “Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.” – Matthew 11:28-29 (ESV)
    •  “Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” – Philippians 4:6-7 (ESV)
  • Advocate: I will speak out for my son’s safety no matter what the situation. I will educate others and make sure they understand his needs and the true risks of his needs not being met. I will do whatever I can to make the world safer for him.
  • Equip:  I will continue to educate our son how to protect himself. I will ensure that those caring for him are educated as well. I will take time to learn all I can about allergies, scientific research and technologies.
  • Be Grateful: I commit to be grateful for each moment and that my son is sitting in my kitchen eating his cereal. I will be grateful we found out about his allergy with a test, not an ER visit and that he has never had a life threatening reaction. I will be grateful for family and friends who made our holidays nut-free and safe this year so we could relax and enjoy the day. We are so grateful for all of you who keep our son safe…it truly takes a village…

My son smiles as I walk in. He and his sister won’t know why they receive such intense hugs and kisses on the head. Today, they are oblivious. I’m glad I can protect them from this reality for a little while longer, but the time is coming when they, too, will have to know and understand these things. Today I am grateful my son is a carefree 4-year-old boy who knows there is food he cannot eat and medicine he has to carry. For now, he thinks nuts will make him feel sick and knows to ask before he eats anything…

But he knows nothing of death. This looming potential threat won’t always be hidden from him. His own fears will be tangible, real and heavy. The responsibility will be huge. My daughter will have fears for her brother’s safety, just like my husband and I do. I pray that by the time they have to carry this burden, I will have learned how to carry my own so I can help them carry theirs.

In the long run, I can’t control this, fix it, or heal my son. I can’t make his allergy go away, even though I would gladly take it on myself if I could. I will keep moving on when fear rises because there will be plenty more days like this. The fear creeps up often; when I’m unprepared with alternative safe food, when we’re in an unknown church, school or home, when a dessert loaded with nuts passes by us in a restaurant, when I learn my son ate something before a label was read, and when I read stories of those who have had reactions or have paid the ultimate price. I will keep looking forward and prepare as best I can for the days when I send him to kindergarten, summer camp, and someday, college. I know this fear will certainly be present in the days to come, but I cannot let it rule me.

So I hug these two little ones tightly. And today, I rise above the fear.