Monthly Archives: March 2013

What food allergy looks like

I admit it: before Little N was diagnosed with food allergy, I didn’t get it. Big E has food allergies, too, and was diagnosed before Little N even started solids. But there was one incident, which was not anaphylactic, and while scary, it was a food (tree nuts) that is fairly easy to avoid. My mom has oral allergy syndrome. Her mouth gets itchy if she eats certain fruits. I have seasonal allergies, as does my husband. We get itchy eyes and runny noses in the spring. Annoying, but not that big of a deal. Easily fixed by taking a couple of pills until the pollen is gone. I didn’t get it.

I’d like to think I was sensitive about it. I mean, I felt sympathy for people with food allergies. I work with two people with  life-threatening food allergies. But without thinking, I ordered hazelnut coffee at the request of another coworker, not realizing that I had just contaminated the coffee maker, forcing my food allergic colleague to buy her coffee every day.

And since Little N’s diagnosis, I’ve encountered some really unbelievable sentiment and situations. Here are a few:

  • At a party: The baby wants the food! Why don’t you just give it to him? He would like it! (I don’t want to go to the hospital right now.)
  • At church: Childcare workers left bowls of cheese-covered crackers on toddler tables within reach of our son after we carefully explained his dairy allergy. Big E noticed them in Little N’s hand and alerted the caregivers. They seemed to think it was not a big deal. In reality, it could have killed him.
  • From other parents: It’s not fair that my son can’t bring snacks for the whole classroom just because one kid in his class is allergic! My son doesn’t have food allergies. We shouldn’t have to cater to one kid!
  • And from many well-meaning friends and family members who simply don’t understand the severity of his illness. Friends and family members who downplay or think we are overreacting. We had a friend suggest to us that perhaps he has food allergies because we are overprotective. If you can believe it.

And I get it – I do. Because that used to be me. I just didn’t get it. I didn’t get what it feels like to be excluded from social occasion after social occasion because other people don’t get it. I didn’t get altering every part of your life. I didn’t get that sometimes food = fear. I didn’t get that food can kill you. As in, dead.

And I want to share what food allergy is like. What it looks like when your whole body thinks a benign substance is poison.  I’ll say nothing here (but might in another post) about what it feels like to be in a cab racing to the hospital, watching your child lose consciousness in your arms – the fear, the blind panic as the cabbie tries to find the ER entrance and you keep checking to see if your child is still breathing.  For now, I’ll just show you some pictures, all of which are pretty mild compared to what we have seen on other occasions, when we are too wrapped up in the emergency to snap pictures.

10% of children under the age of 10 have severe food allergy to at least one food.

The pictures below are of Little N after a very, very minimal exposure to an allergic food. (Think, licking something in which his allergy is the 8th ingredient on the list.)  That’s him in hospital bed after an exposure to sesame seed (tiny amount).  What you can see is how the allergy affects his skin. What you can’t see is how it affects his lungs and his stomach and how it might affect his heart.

I want you to see this. Because I get it now. And I want everyone to get it.

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And here’s my baby without any allergens in his system.  Pretty cute, huh?

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And then there is one instance I’d like to mention, too, because it meant so much to me.  Little N had just been released from the hospital. I was exhausted – totally physically and emotionally spent. We had been invited to a birthday party of Big E’s little friend from church, whose parents have also become friends – two of the most lovely people we have had the privilege of getting to know. I really wanted Big E to go and have fun, but there was no one to take him but me. My husband had another commitment that afternoon, and I had no one to watch Little N, either. I bundled the kids up and took them to the party, with no time to bake something for the kids to eat. I felt depressed. I felt like the worst mom ever. My son was going to watch as everyone else dug into birthday cake. This boy who loves cake – I was going to have to tell him no – we can’t be sure it doesn’t have nuts. I sat at the edge of the playground holding Little N, watching Big E play with all of the other children, feeling down and tired and dreading what was coming up.

And then the non-allergic-to-anything birthday girl’s mom walked up to me and said, “We bought these for Big E. We thought maybe they’d be ok for him?” And she pressed into my hands two beautiful nut-free cherry tarts she had gone out of her way to buy. They were even labeled, so I could read the ingredient list. I choked back the tears and thanked her for her thoughtfulness. There aren’t many times in my life I’ve felt more grateful. And I watched my happy, happy boy devour them, eating birthday dessert just like all of his friends.

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Just beautiful.

These are the lines of a story | The Actual Pastor.

Oh my goodness – amen. I will never look at myself or my loved ones the same way again. How wonderful to have a body!

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All in.

What a week.  I’m sitting here, trying to gather my thoughts into some kind of readable coherency.  Maybe I can start with the touch points as a way of organizing…

1. Revolutionary coaching

2. Revolutionary lesson

3. Faust at the Met

4. Revolutionary coaching

5. Palm Sunday

This post is about singing, but it’s also about fear and courage, authenticity and integrity, hope and hard work, and the power of God.

I’ve been singing my whole life. There isn’t a day of my life that I can recall in which I wasn’t singing. When I was a baby, my parents would write letters to family members about how I was always singing. When I was 1 or 2 years old, my grandfather asked me if I wanted to be an opera singer – we have the recording. One of my earliest memories is telling him that I wanted to be a gospel singer when I grew up.  I sang country, rock, pop, hymns, musicals, art song, nursery rhymes, Christmas carols, songs I made up, songs the babysitters taught me. I sang in talent shows, choirs, caroling groups, musicals, to the church shut-ins, to the babies I babysat, in competitions, and if I felt like I just wasn’t getting enough performing time, I created concerts for my family, standing on the fireplace hearth as my stage.

I went to school and (shocker!) got a degree in vocal performance. And then another one. And then I boxed up my belongings and moved to NYC where I continued to train and to start booking professional engagements. I worked for several years, earning my living solely as a singer. And people liked my work. And I loved performing. And I got great reviews. Great, great, great.

Except that I was never totally satisfied (except for one miraculous performance when I was “in the zone” but which I’ve never been able to recapture).

I’ve been training with my current teacher for a while now.  And he keeps reiterating that my voice is very strong and I know what I’m doing and the coordination is there. Why am I not singing at the level he and I both know I’m capable of?  It’s exceedingly frustrating to him and to me.  I mean… It’s good. It’s fine. It’s ok…  But it’s not great.

I’ve spent the past three months really doing some deep psychological work on myself – unpacking all of those horrendously stuffed bits of baggage – and, as is common to so many of us, I have realized that I am a people-pleaser to the nth degree who constantly asks permission in subtle ways to do anything, especially to sing. I spent my undergraduate and graduate years waiting and waiting to be, as I called it, “anointed”. I wanted the gods of singing (at the time, the teaching staff at my schools) to give me permission to do what I wanted to do. And a few times they did, and how heady were those days! Except, then the next time I opened my mouth, I was listening for approval, rather than to my own inner voice.

And sometimes I would rebel and think, I don’t need anyone’s stinking approval, I’ll show them! Which is actually the other side of the same coin. “They” – teachers, coaches, conductors, other singers – became the focus of everything I was doing. I imagined (because they never actually said this to me – it was all in my head!) – that they had terribly low opinions of me and then I would spend all of my energy proving them wrong.

Good lord!

And what it all amounted to, from a technical standpoint, was that I was always either timidly undersinging, not wanting to be too big for my britches until I had permission, or that I was oversinging to prove ’em all wrong. So I didn’t sing “on” my voice with full depth, resonance and chord closure, or I pressed and sang too loudly and mucked everything up with tons of unnecessary tension.

And all the while, my singing was bullshit.  Not just technically, but from the perspective of meaning.  It didn’t mean anything. How could it? I wasn’t me! I was a projection of some fake person from my own imagination of what other people thought of me. Total bullshit.

So – what about the five events I listed above?

I had a coaching with Dr. Noa Kageyama, and please, if you need his help, run do not walk to his studio. An hour with him is an hour well-spent.  He basically said that I have to stop looking for an extrinsic value and start finding intrinsic value in what I’m doing. In other words, figure out what I like and then do that. And that it doesn’t matter what my teacher or my coach or my husband or my kids or the people behind the table or on the other side of the footlights think. My job is to be the curator of what I think is beautiful and then show that to the world. And to expect that I will come across people who passionately hate it. And that’s cool – it’s not their thing. But eventually, I will come across the people who can’t get enough. And it doesn’t have to be a lot of people. They just have to care a lot. And that will come when I am true to myself.

Then I had a lesson with my teacher. I can’t explain exactly what happened. I’ve listened to the recording to try to figure out what happened, but I think I just looked into his eyes and everything clicked. I started repeating to myself, “You don’t have to apologize for anything and you’ve got nothing to prove.” And all of a sudden, we weren’t talking about my breath or my jaw or the position of my larynx or anything. We were talking about intention and line, and I was singing. Not vocalizing. Singing. My voice responding to the direction of my mind. I went in a few seconds from driving a Pinto to driving a Ferrari 360 CS – I could drive it with my pinky. Freedom I don’t think I’ve ever felt before.

Then I went to the Met to see Faust. I was so happy to be back in that house, but a bit let down by the performance. Still, it was a thought-provoking night, so maybe one of the most important performances ever to me. The cast was good. Really good. Every single singer a world-class voice. And every single one was in some way a disappointment. At the end of the night, I felt like no one was really committing. No one was willing to go all the way. Here we have an opera that is about pure evil and shocking redemption. The story is so horrifying that we should all have been crying and throwing up in the aisles. Instead, it garnered polite applause, with some bravos thrown in for a technically superb aria by the tenor. Every single one of those singers, I believe, has what it takes to commit 100% to the music and the character – to look at evil and decide to go in – but chose not to. And so, missed the mark.

They used to bury performers at the crossroads, so great was the public’s fear of their art. My former acting teacher, Tim Phillips, says that we are the emotional firemen – running into the burning building of the psyche when everyone else is running out.  I want to run in. Bury me at the crossroads, please. These singers, after this performance? I don’t think anyone would have cared where they were buried. They were all so obviously “pretending” that no one could possibly have mistaken it for the real thing.

Ok, so all of this is swirling around in my head. And then I go coach with the wonderful Steve Crawford. I sing through Lucia’s first aria. I’m tied up in knots before I begin. With all my might, I’m repeating my new mantra, to no avail this time. I can’t stop the little voice from telling me how terrible I am and how Steve must hate it, and I sang like a pig. Really awful. He asked me what I thought of it and I said, “On a scale of 1-10, maybe a 2. At most.” We talked it through and starting working on it bit by bit, when he stopped and asked me what my intention is. I said something about my inhalation and getting the right vowel blah blah blah….  He stopped me and said, “So you don’t have a vision for this phrase.” Holy lightbulb, batman! It sounds so obvious. But what a revelation! He said, the problem is usually in either the lack of vision or the lack of execution. I think you can execute – your technique is fine. You don’t know what you want to do, so you obsess about your technique and it self cannablizes. Wow. Knock me down with a feather. We started breaking down the aria phrase by phrase from an aural standpoint. Boom! Legato was there, runs were clean, vowels were pure, etc, etc.  It’s amazing what you can do once you decide what it is specifically that you want to do.

Oddly, I felt depressed after the coaching. I mean, I felt good that we found the problem, and that a Met conductor thinks my technique is fine and not the issue. But I felt overwhelmed. I told my husband, “I feel like I’m standing at the base of Mt. Everest looking up.” Do I have the courage to do it? It’s not about figuring out my vision, per se. I need to work that out in greater detail, but I already have lots of ideas. The question is, do I have the courage to stop the bullshit and be me? To say, this is my vision and I’m going all the way in. I’m singing this phrase to the hilt, I’m going into crazy. I’m going to scare you and me both. I’m going to break your heart and make you laugh and make you throw up in the aisle from fear and horror. And I’m going to do it with dissonance and consonance and text and line and vowels and my body and my eyes and my soul. Do I have the courage to be that naked?  Can I even do it if I’m that brave?

I don’t know. I don’t know.

And then we went to church. I was exhausted and lay my head on my husband’s shoulder and listened to the sermon, my eyes in soft focus on the mosaics above the altar, not really seeing. Until I did see: Be of good courage, wait on the Lord, the mosaic said.  And the benediction was this:

When you feel unwilling or unable, remember that there is a Power far greater than you possess that wants to walk with you. Go the distance. Go the distance. Be at peace. God attends.

Wait on the Lord. Be of Good Courage.

He went to the cross. I can go to the crossroads.

All in.

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Mammals Suck… Milk!

What a great article/blog/project!

Mammals Suck… Milk!.

As a mom who has nursed her two children and is currently nursing and who fought very hard to do it, this is an important issue to me.  I’m not, as they call it, a “lactivist”. I believe that decisions about the way in which you care for your children are as varied as the families that are out there and the issues big and small that impact them, and that most parents have the best interest of their kids at heart no matter what decisions they make, and that most kids end up more or less just fine regardless.  But I also think it’s really obvious that this really cool, really natural thing is what’s best for kids, and that we should individually and corporately support breastfeeding in whatever way we can. And that can come in the form of education, paid and longer maternity leaves, breastfeeding-friendly hospitals, natural drug-free birth, greater community where young girls can see nursing mothers nurse, the general cultural normalization of breastfeeding, nursing or pumping breaks for nursing mothers at work, etc.  It just makes sense that if we want a healthy population, that we would do this pretty easy, low-cost thing.

I hadn’t really planned on nursing longer than three months when Big E was born. But then his birth ended up being this really difficult thing for both me and him and for my husband, too. And all totally unnecessarily. And that’s another post, but there was so much anger and trauma over what happened to the three of us, that I made it my mission to have a great breastfeeding relationship. For all of the obvious reasons listed in the article above, but also as a way of healing the three of us and as a way of kind of sticking it to the hospital that screwed us (and also tried to interfere in our BFing).  And then three months rolled around and became six and became 12…

I’m really, really, REALLY lucky that we had a very supportive and knowledgeable pediatrician and that we knew (and could afford) one of the best lactation consultants out there who came to our home and held my hand and had us sorted out in about 10 minutes. And when I encountered problems over the next three years, she offered support by phone and email and referred me to a doctor specializing in breastfeeding medical issues. I also had the support of my husband, mother, sister (who gave me a very expensive breast pump) and best friend. And I was plugged into an incredibly supportive online community of mothers with children the same age as mine (one of whom even sent me a pump bag when the zipper on mine gave out).  And I live in a state that mandates pumping breaks for working mothers whose child is under the age of three. And I have the kind of temperament that doesn’t like being told no (which I was, several times). And I also had loads of information both before my son was born and after.

And then when Little N was born, it was a drug-free home birth with experienced midwives who fully support breastfeeding. And now because he is deathly allergic to dairy and also allergic to soy, I was (pretty much!) commanded by our current pediatrician and by his allergist to continue nursing him until he’s two years old. And I was so happy I could say, “No problem!”

I wish every mother that wants to nurse the advantages that I’ve had.

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EpiPens Everywhere?

At least in places where food is served? I say, YES! More and more children have life-threatening food allergies. And there are children out there with unknown allergies, like this little girl (suspected – the autopsy hasn’t been performed yet). It’s a little thing but it could save lives.

Allergy deaths offer lessons, doctors say | TheSpec.com.

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The Sassy Curmudgeon: How to Be a Perfect Parent in 5 Easy Steps, or Probably Never

The Sassy Curmudgeon: How to Be a Perfect Parent in 5 Easy Steps, or Probably Never.

One of the funniest things I’ve read in a while. YES! This just made my day so much happier! We all suck at parenting!!

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Pack a “Go Bag”

I love this. We’ve been to the hospital three times with Little N, two of which times we ended up being admitted to the hospital after spending all night in the ER, with Big E with us. A Go Bag would have made the visits so much easier. And trust me, you don’t want to be trying to think of what to take when the ambulance is on its way.

Child Life Mommy

If you have kids or you take care of kids, than you already know that at some point in their lives you will more than likely end up in the emergency department. It is bound to happen. Kids are more prone to injury and accidents and they can become very sick when your pediatrician’s office is closed.

So what can we do as parents and caregivers to be ready for this?

Pack a Go Bag.

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The bag should have stuff that would help make the experience at the emergency department a little less stressful.

This is a bag that can be left in your car or in a closet at home.

Items for the Go Bag:

  • Extra Clothes for Baby/Child- Sweats, pajamas, socks, underwear, diapers (anything that will be comfy).
  • Extra Clothes for Parents- T-Shirt or Sweats (Having a shirt full of blood or vomit isn’t too comfortable).
  • Blanket, stuffed…

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