Tuesday, July 29, 2014

Take me to Cloud Cuckoo Land.

I don't like to talk a lot about my oldest son's food allergies. 
After watching the Lego Movie approximately 16 times, I have decided that I might just be a little bit like Princess Unikitty.

"Any idea is a good idea except the non-happy ones. Those we push down deep inside where you'll never, ever, ever, EVER find them!"

Girl, I can SO relate!  And, hey, I like living in Cloud Cuckoo Land.   HAPPY THOUGHTS!!! POSITIVITY!!  No frowny faces!  No bushy mustaches!   I'm there!   If I don't think too hard about his allergies, all of those thoughts don't bring all of the feelings up to the surface. But, the summer brings lots of reminders of living with allergies- cookouts and picnics and playdates at the park and block parties galore- not to mention the annual trip to the allergist.  The poking, prodding and the dreaded waiting for the results.

So, last week I woke up and I just had this feeling that "today was going to be the day." 
The day the allergist letter comes in the mail.  
(dun, dun, duuuuunnnn. . .)
Even though the doctor says to give them 6 weeks and the appointment was just about three weeks ago, I could feel it.  The letter was coming.

Sure enough, when Philip was upstairs putting his laundry away and I ran out to check the mail and there it was.

My hands were shaking a bit when I opened it.  The allergist had given us some hope this year, citing that allergies to multiple foods were statistically very rare and he was doubtful that Phil would show a continuation of his allergy to eggs and tree nuts in addition to peanuts as he had in the past.

I unfolded the letter and scanned the numbers eagerly, looking for that magic zero somewhere.  My heart sank, all of the allergies were still there.  Still avoiding all peanuts, tree nuts and eggs.  Retest next year.  IgE levels, blah, blah, blah, business, business, business, numbers. Really, no change to our lifestyle, but I didn't want to have to tell my sweet little boy the news.  I went inside and puttered for a minute when I heard him from the stairwell.

"Hey, Mommy, did you get distracted?"

"No, buddy, I'm on my way.  I just had to check the mail.
Your letter came today from the allergist."


"Hey, Philly," (I took a deep breath and looked him in the eye.) "you didn't outgrow any of your allergies.  
The numbers are all still there.  
I'm really sorry. . .
I was really hoping that you would outgrow some."

"Yeah, me, too, Mommy."

I could tell he was trying to be brave, but his eyes were starting to well up with tears.  He was biting his lip and looking away, and his voice was starting to shake.  I put my arm around him as we sat there on the staircase.

"Sweetie, how do you feel about it?"

A tear slipped down his cheek.

"Sad.  I feel sad, Mommy.  It's just that eggs, eggs are in everything!  They are hiding everywhere.  I . . .I was just was really hoping I could outgrow it."

Underneath his sadness, I could also sense his anxiety.  Even though his nut allergy is so, so much more severe, the eggs are his first concern, because they are, as he puts it, "an ingredient."  You can't see it, smell it, or taste it to know the egg is there.  Plus, it is an ingredient in just about everything delicious Phil loves. . .cake, cookies, pancakes, muffins. . .the treats at basically every celebration everywhere.  And no matter how yummy and fabulous your mommy's egg-free baked goods are, Phil is old enough to know that he is different.   He has to wait for his special treat, ask questions, be on alert.  He handles it so well, but being different isn't always easy, and even at 7 he knows as much.  His eyes have welled up before asking me why he has to be different, and it breaks my mama heart.

As we sit on the steps, my arm around my sweet oldest boy, my heart is sad, too.  I have learned to live with the anxiety. . .that constant, underlying, on-edge feeling when we are any place new, any place with food, and place with people who don't know us, or, EEK!  All three.  I have learned to deal with the anxiety by being vigilant, being prepared, educating Phil and just praying to God to protect my sweet son.  Phil has many guardian angels right here on earth watching out for him, and for that we are so blessed. Daniel is his number one guardian angel and protector, and who better to look out for you than your brother and best friend?   But even though I can manage the fear, I was surprised by the sadness.  The sadness is new- I didn't have it when he was a baby or a toddler and he didn't understand the severity of his situation.  Just since he is older, and now he is starting to understand the weight of it.  He "gets it".  He has feelings about it, and when we talk about it my heart just absorbs all of those feelings.  His pain is my pain, his sadness. . .mine.  I guess this is what being a parent is all about.

But, being different teaches him important lessons, too.  He's wise, compassionate and insightful, and also the biggest little optimist I know.

"Well, Mommy," he says, as his voice starts to transition from wavering to chipper. . ."there's still a chance I can outgrow it, right?  Maybe next year!"

"Right Philly!" (even though I am not so sure, Princess Unikitty is going to jump right on board with that.)
"And you know what, maybe someday there will even be a cure!  And then you won't even have to worry about it at all."



"That would be great!  Now," (pointing at the swim trunks I have been holding in my other had this entire conversation) "are you going to go put Daddy's swimsuit away or what?"

I laugh,
"let's go."

I reach out and feel his trusting hand in mine.  I clutch it as we go up the stairs, holding on just as tightly to the hope that things will be okay, and someday, yes, someday. . . they might be EVEN BETTER.  

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future
Jeremiah 29:11

Yep. I can hold onto that.

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