Tuesday, March 9, 2010

in sharp focus

This is the hardest thing you will do as a parent. There is nothing harder, nothing that will eclipse the act of telling your child that she is okay, that she will be fine, that the pain is necessary.

When you first arrive at the doctor's office, you sit with your husband and try to make nervous small talk, the kind that neither of you will remember in 30 seconds because you are both looking around, wondering what is coming next, your eyes on your toddler laughing as she turns the rotating display of pamphlets. You read the titles as they spin past: Helping the Allergic Child, Coping with Asthma, What is Anaphylaxis?... they are printed in bright green, cerulean blue, chubby cheeks smiling.

A male nurse leads you back to the exam room. He is a big guy. He seems nice. You hope that he will be a gentle giant. His name is Sam.

As you wait, your daughter pinballs around the room, laughing and pointing at your husband. She is celebrating this daytime excursion with her daddy. You pull out a wad of notes you have brought with you: a pen, print outs from your daughter's pediatrician.

You wait and try to slow your breathing. Despite this, you are holding your breath when the door opens, hoping that this doctor will be as helpful and knowledgeable as his credentials promise.

The doctor is in his late forties, glasses, has reddish hair that seems fuzzy around the top. He does not smile, but you don't need him to. You want him to know that you respect him, that you need answers, that you want to work with him and find good solutions to this vast territory known as SEVERE ALLERGY. He listens to your explanations of the precious few interactions your daughter has had with the dreaded trigger items (seafood-soy-peas-peanuts, you say them with your eyes closed like a prayer). He asks follow-up questions. He is interested. He offers no opinions other than to say Let's see what happens after the allergy pin test.

This is what you needed to hear. You did not want an alarmist. You did not want guesses. You want a game plan. You want answers. The doctor says he'll step out for a while - the nurse will be in shortly with the tests.

You and your husband explode into action as soon as the door shuts. You scramble for your Ipod, an episode of Sesame Street on pause. You instruct your husband to undress your little girl down to her diaper. She grows suspicious as you pull her woobie out of the diaper bag, a paci in hand.

Your husband lets your daughter crawl around on the exam table. He jumps up to join her, hoping he can help her to relax.

You are nervously taking photos when Sam the nurse walks in, his hands full with dozens of little glass vials. There is a glint of metal deep inside each tube. When you ask how many he'll be doing, the nurse gulps his answer, Twenty-five.

He draws a grid on her back with black marker. She's so small, he says.

And then you're in it, watching your husband hold her as the nurse begins to prick her soft white back with the needles. He works fast - at first she is surprised at the pain. You imagine that she is wondering if she accidentally brushed against something sharp. But there it is again. And again. And again.

Four, five, six.

You are counting under your breath as you hold her head and tell her the lie It's okay, It's okay, Things are fine.

Eleven, twelve, thirteen, fourteen.

She is squirming in your husband's strong arms, kicking her legs. You rub her cheeks.

Seventeen, eighteen.

Her chest is slick with the tears, her eyes bloodshot. She is bewildered that you aren't stopping the pain, that it continues.

Twenty, twenty-one, twenty-two.

You can barely see her face through your own tears, and know that your husband is even more upset, his knuckles white around her shoulders. Your daughter's scream is turning into something ugly: breathy and hoarse.

Twenty-three, twenty-four.

And you know you're still repeating those murmured words, It's okay. It's okay. We're here with you. You wonder when she is going to stop believing that everything will be fine because you're here with her. You wonder when she is going to realize that you cannot take the pain from her, as much as you'd like, as much as you try. You wonder when she is going to stop looking to you to make it go away, to make it better. You hope that it's not today.


Because as you hold her shaking body in your arms, you recognize that you need her to ask you to make it better. That, as her parent, the only thing you actually can do is offer these words - the words that you need to say as much as she needs to have you say it:

It's okay.

We're here.

You're not alone.

And then the science experiment goes active: you start to watch her back pucker and flare in the grids. As she calms herself, slows her breathing, your husband is riveted to these spots on her back. He can't believe the hives growing there.

Sam peeks and smiles, Oh! That's a good one!

Your husband wonders aloud, So things are looking good?

Oh yes, Sam nods. Very impressive!

You laugh and add, for clarification, I guess it depends on your perspective, huh? You must really like your job.

To this Sam looks at you, wondering if you're being sarcastic - but he reads your face and knows you're sincere. Yeah, I really do.

You are alone in the room again with your husband and daughter. Sam will be back in a few, he says. You try to keep your daughter from rubbing her back, the welts and hives growing red and angry.

As time passes, you begin to guess which area belongs to which allergen. You pray for no surprises, that everything is as expected, that you will be able to handle what is coming.

Now Sam is taking notes on each allergen, hmmming and hmmming as he writes. You point to an area that is raised in a hot pink welt and ask What's that? Oh, it's cats, he says.

Your stomach knots and you sigh, wondering.

When the doctor comes back into the room, you are composing your face, categorizing the questions you want to ask. The doctor starts slow, goes through each allergen that was tested, talks through what your daughter should not consume or touch. He steadily covers the things you already know: No peanuts, No peas. He surprises you with information about soy, that it's okay in small quantities (such as soy flour that is added to most readily-available baked products). He says that she cannot tolerate almonds - that her allergy to them is equivalent to the peanuts. He discusses seafood, says that it is a much more varied category than you previously thought. That your daughter can eat salmon and cod - but needs to stay away from all other seafood. He says words like pure and 100%. He is painting this topic of allergy with steady strokes. Patient strokes. He seems to want you to know that this is a situation that you can deal with, but you need to be careful.

He talks about food processing practices - that because she is allergic to two kinds of nuts she should stay away from all of them, that there are no promises that anything is pure (there's that word again), that anything is (again) 100%.

He tells you she should not eat any seeds, either. That they have seen some cross-over in severe allergy cases such as this. The best thing, he says, is to stay away from all of it.

You nod quickly. Yes. We know. Yes. This is what we're already doing. You stop him for a moment and tell him what he needs to know: We have already made the lifestyle change. We are here for answers, for a gameplan. But we're already in the mindset.

The doctor brightens with this statement, says Great! He offers websites and a green folder of information. He is taking furious notes that Sam will later print out to put inside the green folder.

When you ask about the cat allergy, he is hopeful. Says that the allergy would manifest itself like asthma, that you should watch her closely. He has seen this many times in children who have grown up with cats: they won't actually develop the allergy until they have spent significant time away from them. Until then, he says breezily, you won't need to get rid of the cats.

It's later when you are getting your daughter dressed, putting on her shoes. You sink quietly into the blue chair in the corner, breathing heavy. The tears come then: the exhausted tears, the tears of gratitude and relief. Your husband grabs the diaper bag, your daughter in his arms, and he holds his hand out to help you up: Well, he says, I guess we'll be back here next year then?

Yes. I guess we will.


Kathy Sprinkle said...

Wow... breathless reading every word over here. So sorry you and she had to go through this... what a little trooper.

Can not imagine needing to worry about this... parenting is tough enough!

Spadoman said...

I do have an idea of how you and Chip must be feeling. Like you let Alice down, like it's your fault that she has allergies. But inside, way deep inside, you know that is not the case. This is her lot in life. You, as parents, are the people who have to be aware and keep her from the foods and things that will harm her. Then, as years roll by, you must teach her and remind her of her allergies so she learns, when she is out with friends as a 13 year old, to not eat anything with nuts.
I wrote an article some time ago about our lives not being our own. Maybe you remember it. When we take on the responsibility to raise children, we end our lives, because the care that is really needed consumes our life as we give it to the children, to others that need us.
The situation looks bad, and going through the watching and feeling insignificant while your daughter has pain induced upon her is horrible, but you know it is to find out what you need to know. You know that the allergies, if left undetermined, can cause greater harm and pain than the small pin pricks. And pain doesn't last. We don't seem to remember pain, especially as a small kid.
Hang in there. You are great parents. Now you have the tools to take care of her. And remember, our lives are not our own. It's not about us.


Anonymous said...

Oh honey, you made me cry first thing in the morning. My heart aches for all of you.

I was that kid growing up. I had the grid on my back with large hives flaring (mine never involved food though just everything else). I have always been allergic to cats (and dogs) and have had asthma alongside. Yet, we have 2 cats and 2 dogs. I know every person is different, but I want you to know in that area, there is hope for sure. For me, my body gets used to my own pets, for the most part. I can't pet the cats and touch my eyes without reaction, so I just don't do that. Some cats and dogs I encounter are worse than others and I learn quickly which to avoid.

Again, I know every child is different and I know it must seem so overwhelming. But the thought of having to give up the cats is terrifying to me, so I wanted to offer what little I could.


Sarah said...

Oh boy. That was tough for all of you. So sorry you had to go through it.

Swistle said...

I had this test done when I was an older child, eight or so I think. I remember the pokes didn't hurt too much---more like scratches, or like when I used to deliberately put a safety pin under a single layer of skin (did other people do that too? It was a fad in my school for awhile). But the ITCHINESS as everything responded was pretty awful, just because I wanted so badly to scratch!

I had a big cat hive too, and the allergist said we MUST get rid of the cats, really must, and we didn't. (My parents figured that if I'd lived with the cats for eight years with no health-threatening problem, it wasn't actually necessary to get rid of them.) I grew up with two to three cats, then was away from cats for four years in college, then have had two to three cats ever since; the last few months is the only time I've only had one cat. It's been fine.

Rose said...

Poor little girl! I'm glad she made it through everything okay!

I have an allergy to animal hair. However, we can still have animals. We just have to keep the animal brushed, and I can't let the animal in my sleeping area. If I sleep in an area where an animal is (or was), I get really stuffy. Otherwise I'm fine! (Just another insight that you might be able to use!)

I have a question. For the nuts, I assume she also needs to avoid things that were "processed on equipment that processes nuts" right?

Also, if you go to a restaurant that serves shellfish (like Red Lobster or Claim Jumper), you can make them aware of a seafood allergy and they will cook your food on a grill that shellfish never touches.

Also, I didn't know that squid (calamari) was a shellfish, but apparently it is! So for seafood, I assume all fish are okay, but anything that is not a fish is out, right?

Sorry if I'm asking too many questions! I'm glad her allergy test is done though!

stephanie said...

Aw, pumpkin. I'm so sorry she (and you two) had to endure this. I know she doesn't realize you exposed her to the pricks and pinches because you are GOOD parents and want to keep her as safe and healthy as you can.

clueless but hopeful mama said...

Big, fat, Mama-sympathy tears over here. I remember having to hold Zoe down during a pelvic ultrasound and how she screamed and how she looked at me as if begging me to END IT and how it seemed to take forever and I would have given ANYTHING to take her fear and pain away.

But now you have answers. And a good (it sounds) doctor.

Big hugs to you and Chip and Bean.

artemisia said...

Oh, a tear just slipped down my cheek. I am sorry you all had to go through this.

Hugs. Hugs. Hugs.

Bethsix said...

You can do it.

Brad had these tests as a kid (he doesn't remember them) and was severely allergic to, I swear, almost everything. His mom told me, but I can't remember. Eggs, peas, I think, pork, dust, cats, milk, cedar, ...

He grew up with cats and was fine, but then developed a bad reaction in adulthood. Buddy is the only cat we've found that he doesn't react to.

He never really had a major reaction until adulthood, when his face and mouth swelled for no apparent reason one New Year's Eve. He went back to an allergist then and found out (111 sticks, I remember!) he's now only allergic to dust, cats, and two pollens. But... he's so allergic he has a prescription for an epi-pen.

I know you don't need this primer on my husband's allergies, but this is all to say it will be okay. I mean, I can't KNOW it will be okay, and it's probably condescending because you are living it, and your Bean is so small, and it's much different to be the parent, and I know you know it already anyway, but really, it will be okay. Kisses.

KAY said...

oh my! so sorry to hear about the test. everyone deserves a nut-free, cat-free, shellfish-free cupcake!

wandering nana said...

Oh, poor little Alice. As I read your post it took me back 29 years ago. I still remember the day we had to have our youngest have these test. I remember 36 sticks. I remember trying to help her know it would soon be over. She actually out grew all of hers but they never could figure why she still had runny noses. She had an allergy to trees, grass, and whey. When she got older they finally said she had non-allergic rhininitis (did you know there is also an allergic rhininitis?)

Eleanor Q. said...

The look in Alice's face in the last picture is like she's willing to take down anyone else who come near here again. Poor Alice.

I also remember having this done as child. I was old enough to understand what was going on but I imagnie that its much harder when you don't know why things are happening.

I know its so hard to stay strong for her but you guys are doing great. It sounds like you're finding good people to help you which is really important. Good luck.

Erin P said...

It's rough to put your child through it, but as things go on, you can help prepare her for repeat tests and even allergy shots. I get 2 shots every 2 weeks now, and there are lots of little kids who come in all the time and just take it like a champ--nothing to it. As she gets older she will know that sometimes needles are a part of life, you suck it up and get through it.

tearese said...

My sister has severe allergies and asthma too. We had cats growing up, but now she gets severely sick if she goes to a house where cats or dogs live, even if she never sees the animal. They didn't know she had allergies till she got a penicillin shot at age three and reacted badly to it.
Good luck with all of this!