Empty Tear Ducts, Full Promises

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Today is Elena’s last first day of preschool and Olivia’s first first day of preschool.  It’s a big day.  This is different from the past two years when Elena went off to school for a few reasons.

This is the first time I have sent a non-allergic child to preschool.  It’s incredibly different.  When she got out of the car, I didn’t feel panic that it might be the last time I see her.  I didn’t worry about what the other children in her class might bring in or might have eaten for breakfast.  I know that, even if things don’t go perfectly for her today, Olivia will be safe.  That’s not to say it’s easy to let her go or that I don’t have any concerns for her.  I really hope she has fun, and makes friends, and makes it to the potty every single time.  If not, though, I know she will have another chance.

With all of the recent news of children losing their lives to food allergies lately, this year was the toughest for me.  Last night I was restless.  I have always promised Elena I would keep her safe, but this year that’s not enough.  I have a few more promises I need to make.  Elena, I promise not to let you see my fear as I drive you to school this morning.  I promise to get all of my tears out when you’re not around, so you don’t have to wonder what might be causing them.  I promise I will be strong and brave and I will not let my fears prevent you from living.

When every bite of food your child takes could take her life, it is terrifying to know she will be eating when you’re not around.  Even though I have checked and packaged all of her food myself, I won’t be able to breathe easy until I see her face at pick up.  I will smile and try not to hug her too tightly.  I will act like it was a normal day.  I will pretend like I enjoyed my break while the girls were at school.  Mostly, I will say a prayer of thanks that she is back under my watch.

I have many prayers of thanks for this day.  I thank God that Elena doesn’t seem crippled with the fears that are eating me alive.  I thank God for the brave parents,  like Natalie Giorgi’s mom and dad, who use their own loss to bring light to the subject and make all of our children safer.  I thank God for the wonderful and loving teachers and director at Elena’s school who “get it”.  I thank God that He gave me such a wonderful partner to navigate these challenges with.  My husband is strong when I’m weak and he is able to help me avoid making emotional decisions against my better judgement.  Finally, I thank God for the strength to let her go and live that life He gave her.

Since I was up all night getting my tears and fears out anyway, I put together this video.  Get a tissue.  You have been warned…

Here are a few helpful resources if you’re sending your child to school this year with Anaphylactic Food Allergies…

Get Schooled In Anaphylaxis

FARE Food Allergy Action Plan

Top 8 Food Allergies (and how to eat around them)

Lunch Ideas (egg, dairy, peanut, tree nut free)

We rocked out the night before school started to Kyle Dine‘s CD’s.  They’re really fantastic for getting the kids thinking and asking questions.  I also like sharing these songs with our non-allergic friends.

Please post in the comments if you have resources that helped you with the task of sending your allergic children off to school.  Most of the best resources I have found in this journey have come from other mothers.

Anyone Know a Good Mother’s Intuition Repair Man?

You would think that I would know by now what an allergic reaction in an infant looks like.  You would think after all we have seen and experienced with Elena, that I would be an authority on the subject.  In fact, I have received countless emails and phone calls from friends asking, “Is this a food reaction?” as they describe symptoms their children are exhibiting or send photos of rashes.  We explained away so many symptoms when Elena was an infant.  If only we had known then what we know now, right?

The problem is, these symptoms are never black and white.  We were sure that Olivia had food allergies when she was a baby.  Ironically, she was the only one I was sure about, and as it turns out, she has none.  (See details of Olivia’s story here)  Because I was so wrong with her, I was hesitant to make the same assertion about Wyatt.  I didn’t want my hypersensitivity to lead to another incorrect assessment.

Sure, he was fussy.  I just assumed that was colic.  He was rashy, but so was Olivia.  He scratched at his head when he was upset and he spit up a lot.  I had logical explanations for all of it that did not include food allergies.  There is no reason to jump to conclusions.  Just because we have one child with food allergies, does not mean we are destined to have more.

It wasn’t until Wyatt’s 4 month well visit that it all hit me like a ton of bricks.  I had my little list of “concerns” all ready for the occasion, like any other well visit.  The nurse showed a little bit of concern after charting Wyatt’s weight because he had dropped from the 50%ile to the 20%ile.  When the Dr. came in and asked if I had any concerns, I started nonchalantly listing them, expecting the usual, “that’s perfectly normal” reassurance.  This time he just listened without saying much.  I felt myself connecting the dots as I was speaking and listing the other pieces of the puzzle that I had not included on my list, but now seemed so obvious.

He cries a lot, especially in the evenings.

He seems to eat frequently and spits up a lot.

He has rashes on his torso and eczema that never goes away.

He still has terrible cradle cap.

He is only soothed by bouncing on the yoga ball (exactly like Elena as a baby)

He itches.

I know he itches because he squirms all the time and scratches up his head and face when he’s in the car.  Otherwise, I never put him down because I’m afraid he will cry and scratch.  Until this moment, I convinced myself the scratching was just because he hates the car seat, but I know better.  He itches.  Of course he itches.

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Wyatt’s scratching made him look like he had been in a fight with a bobcat every time he rode in the car.

Our pediatrician then stated that he had never done an allergy test on a 4 month old.  The earliest he had done the test was 6 months.  I just held my breathe.  Elena’s allergy test at 9 months was horrific and I’m still not over it.  (Elena’s story here)

He asked if I thought I could cut out all soy and dairy as an experiment.  I assured him that would be no problem.  That is one thing I know how to do all too well.  The next morning, I began my and Wyatt’s dairy/soy free lifestyle and oh my.  What a difference.  Within a few days, he was less fussy and spitting up less. By the end of the first two weeks, I swear he was a different baby and had grown more than he had in the previous month.

Have you ever been so sick, but not realized it until you felt better?  This happened to me with my thyroid.  I found out in 2007 that I had Hashimoto’s and my thyroid was in bad shape.  I started taking Synthroid and it wasn’t until I started feeling better that I realized how horrible I had been feeling before.  The same thing happened here.  After Wyatt became himself, I realized he had been sick.  Even looking back at photos that at the time looked adorable to me, all I see is a sad, sick little baby.  He was always exhausted and itchy and miserable.  He would smile, but only if the time was just right.  Although I didn’t know it at the time, other family members had concerns about his lack of activity and alertness.  Now I question whether that viral rash he had a few months ago was actually a virus.  Perhaps it was a reaction to something I had eaten.

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After the dairy/soy detox, he is so happy and lively and active.  The rashes on his torso and his cradle cap disappeared.  He still has some eczema at the backs of his elbows and knees, but it has improved.  He is much happier to be put down and play and he naps.  He also spits up far less than he used to.

These photos are from “before” I eliminated dairy and soy.  Notice how tired and weak he looks.  Anyone who holds him is usually covered in spit up and even when he did smile, he always had some kind of rash or redness on his face:

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These are Wyatt’s “after” pictures.  He is so much more alert and happy now.  He is active and loves playing with his sisters and with toys.  Also, the matted hair from his cradle cap is now smooth and silky.  He is truly a new baby:

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This isn’t to say that Wyatt’s food allergy story is finished by any stretch.  We still don’t know if he was reacting to the dairy, soy, or both.  He could also have reactions to other foods.  He does still have some rashes and spitting up.  Also, since I rarely eat peanuts, tree nuts, or eggs due to Elena’s allergies, we don’t know if he would react to those.

Even though we don’t have all of the answers yet, I’m so glad my eyes have been opened.  I’m sure we will do the testing soon after he turns 6 months old, so hopefully we can start figuring out what his food allergy profile will look like and hopefully it won’t be too different from Elena’s.

Most of all, I am ready for this sweet baby boy to feel good and be healthy.  I’m heartbroken that it took me this long to put the pieces together.  I always see stories about these superhero moms who sense that something is wrong with their child even when everyone else is telling them it’s all in their head.  They turn out to be right and good old Mother’s Intuition is credited another success.  Where was my Mother’s Intuition?  It shouldn’t have taken that much.  For heaven’s sake, this is my second time around with this scenario.  Why didn’t I know until he was 4 months old?  Every time I had an inkling that it could be food allergies, I followed it with, “but you know, I thought Olivia had food allergies too and look at how wrong I was”.  Oy Vey!!!

All I can say is, Wyatt, I love you and I got this.  Starting now.

Shame On Me

I have this big idea to have other people in our lives write some perspective blogs, telling about their experiences with food allergies, either through their interactions with us or with others.  When I was thinking about these perspectives, I kept hoping our guest bloggers will be edgy and raw.  I want them to tell what they really think and how they really feel.  I want them to put aside all of the right answers and supportive things to say, and just tell it like it is.  The more I thought about this, the more I realized I haven’t done that myself.

I have touched on some of our struggles and many of our accomplishments with living with food allergies, but I haven’t really written a dirty, honest blog about what it feels like to be on this side of it all.  Here goes…

There are a lot of things I HAVE to do because I have a daughter who could die if she is exposed to certain foods.  I HAVE to keep her safe and I HAVE to help her live a normal life.  These aren’t fun undertakings that I have taken upon myself because I am an exceptional mother.  These are requirements.  I’m not going above and beyond when I send her to a party with a safe cupcake.  I’m just trying to meet the requirements of being a food allergy mom.  Is it fun?  Hell no.  Is it going to make her the happiest kid on the block?  Let’s just say, it’s a good day when she doesn’t break down because her cupcake was too different from the others.  Luckily, this usually happens after the fact when she is reflecting on her day.  At four years old, she already knows not to draw too much attention to the differences in front of others.  Is this something I have done to her?

I find it interesting when people say things like, “you’re so good at this” or “you were made for this” or even “I don’t know if I could do it”.  Really?  Was I?  Was this somehow meant for me?  Was my child supposed to have this horrible life threatening allergy to something she can’t get away from because I have a knack for it?  If not, then it must be by chance.  Did we just get lucky that I happen to have a skill set that enables me to keep my daughter alive?  It’s strange to be told you are good at something that you don’t want to be doing and that you have no choice other than to succeed in.  If I don’t do it, she could die.  Trust me, you could do it and you would be good at it too.  It’s not a gift.  It’s just enduring a curse.

I’m not going to say too much about the “theorists”.  You wouldn’t believe the conversations in which people tell me her food allergies were probably caused by something I ate when I was pregnant or something I didn’t eat or being too clean when she was a baby or not clean enough.  The theories go on and on and usually place the blame on the mother.   All I can really say about this is…DON’T DO THAT!!!

Here comes the part where I shatter your theories about me being made for this.  I hope the people my daughter encounters in the world are nothing like me.  I had so many ideas about what a “food allergy kid” is like.  There was a time when the mention of food allergies would have evoked a very specific image for me.  Food allergy kids are nerdy and sickly.  They probably don’t have the best social skills and they’re afraid of everything.  They’re like the snot bubble kid from the movie Little Giants or [insert your own generational reference].  Don’t even get me started on the kids with Asthma.  What kind of word is that anyway?  Shouldn’t there be some vowels in the middle?

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Now that I have a child with anaphylactic food allergies to egg, dairy, peanuts, and tree nuts, as well as asthma, I no longer think this way…is what a better person than I would say.  I just can’t seem to get away from the social stigmas that I have attached to these things.  When we found out about her asthma, I was pretty terrified.  I had read so many stories about split second decisions where an allergic reaction was mistaken for an asthma attack and an inhaler was used rather than the Epipen.  The outcome is usually very bleak.  As bad as that was, I still held on to my social concerns.  Now she’s going to be carrying around an Epipen AND and inhaler.  We might as well just tattoo, “bully me” on her forehead.  This is really only a valid concern if she encounters people who think like……me.  Is this a good time to suggest the media is to blame?

I need to clarify that my daughter in no way fits the profile of a “food allergy kid” that I held for so long.  I have met many other children with food allergies since she was diagnosed, and they don’t seem to fit it either.  I’m ashamed that it took being her mother to make me see how ridiculous it was to assign all of these personality traits to this medical condition.  How closed minded of me.  This is where the “theorists” would say, “Maybe God knew you needed this experience to change your perspective.”  Seriously, don’t do it.

My fear is that others like me will never have a change of heart.  Most people will never have a child with severe food allergies.  If that’s what it took for me to break a stereotype I didn’t even know I had, what hope is there for her?  My hope is that she encounters people in her life who are better than I am.  So far, I think she has.

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 Elena,

You not only hold my heart, you have also changed it.    

Love, Mommy