Sunday, August 17, 2008

returning to the real world

We spent a weekend blissfully in the bubble of caring that is the HitWGC . Mothers and fathers of children with cancer, blood disorders, immune disorders - we spoke each other's language, and we cuddled under handknitted blankets to talk.

And talk. And talk. And pass the tissues. (but no KoolAid) And hug each other! Imagine: a nice Jewish girl from New York hugging people. In my neighborhood, you didn't even make eye contact. And yet.

I don't think I had realized how much I needed this past weekend until it was offered to me - the photo of me and the Man, taken upon our arrival, shows me looking suspicious and wary. I don't like weekends that are designed to make me cry, and pity raises my hackles. And yet.

By the end of the weekend, the Man and I had relaxed back into each other, laughed a lot, hugged a lot, and considered some rather clever suggestions from friends. (thanks, Julia! And b'sha'a tova, indeed it was...) The photo of me, taken Saturday night, shows me wearing a gigantic blonde foam wig, and mugging for the camera. At the time, I was two Coronas into the night and had just done my very best electric slide, which should tell you something.

This haven is a precious gift to us, and I feel so silly that it is offered. No, this isn't an opportunity for you all to tell me that we've earned it: there's specifics here. The HitWGC is available to us for hemophilia. But think about the list: kids with CANCER, kids with immune deficiency, kids with sickle cell and any number of things that are much scarier and painful and immediately life-threatening than hemophilia. Get up, brush teeth, do factor - as Rix once described hemo-life to me. Think something is brewing? Give more factor. Truly, our adventures from the past month aside (and I insist on this 'aside' bit, because you'll note that hemo stuff has been mostly blah on the blog lately, aside from the Nose Saga), hemophilia is managed care and low-level stress. Totally manageable. For us, anyway.

Food allergies, on the other hand, are high stress and a bitch to manage. But that's not what got us a ticket to HitWGC. I'm waiting for them to realize that hemophilia is a cakewalk, by comparison, the Man whispered, and kick us out. I nodded. Me, too.

Sitting in a circle, I heard a mom admit to struggling with bonding with her medically fragile child. She told us how she pushes the child away, afraid to really connect with the kid. My mouth opened, and I heard myself say, sometimes, I imagine that he's died. My mouth went on. I imagine what could have happened, and how, and I imagine someone telling me that he's dead. I sat there, opening and closing my mouth like a fish. Someone handed me the tissues, and I realized that I was crying. Dammit, I might have thought, I do NOT cry. But I had cracked myself wide open, and I was breathing, and felt safe. So I cried.

It's true, I do imagine the boys dying. Some days, I need to - I need to walk through the fear and face it. But whenever I push myself through the scenario, it's not the clotting that kills them - it's the allergies.

Allergies make my boys fragile in ways that hemophilia does not. But how to explain this to the other parents - the cancer parents who are afraid to buy diapers in bulk? When pressed, I just said that I was the parent of a child with hemophilia, who also had - along with his brother - an immunological funky that made things complicated.

Some people get what it means to have a peanut allergy - this crowd probably would - but peanut allergies are such a hot button issue that I didn't really want to risk it. And I didn't want to explain how it works, walking them through an immune system that strips your pantry bare, rips up carpet and slashes the PDR's antibiotics list. My kids have allergies like they're grabbing candy off the shelves at the grocery store. Except that they're probably allergic to the candy.

Dairy and eggs fired the warning shots, and we were off and running. A peanut allergy (legumes) invited the body to test out allergic reactions to lima beans, peas, kidney beans, pinto beans, chickpeas and lentils. A wheat allergy lead to allergic reactions to rye, oat, barley and spelt. One tree nut allergy begets another, as is often the case, but it then expanded to sesame and poppy seeds. One antibiotic reaction lead to another, and lead to the Eldest coding. Days later, the infectous diseases docs were begging us to sign the child up for surgery - it was the best chance of protecting him against an infection that they wouldn't have the drugs to cure. Hemophilia, meet allergies. Allergies, please procede to kick a little hematological ass, hmm?

When the Eldest developed immunological knock-outs for his clotting meds, it was wholly appropriate. His immune system is turbo-charged, the docs said, marvelling. And it kept charging onwards, setting a pattern that the Toddles perfected. Egg, kiwi, trees, squashes, drugs, animals, go go go go. And on. And on. Immunological funky, in retrospect, seems rather lighthearted as descriptions go. Out of fucking control seems more apt.

On the other hand, I was in the HitWGC bubble. So, I didn't have to offer more than funky to explain Chez Imperfection. Though my ticket in had the wrong name on it, we were definitely in the right place. I was sitting next to mothers who knew what it was like to love a child that is at risk, to hate Johnson & Johnson ads, who understood the sense of isolation that can arise, and the joy that crashes down when someone refuses to step back from you. They understood what it was like to have your world turned upside down, and to discover that your new career was as MD-mama, or in my case, Martha-MD-mama. And be pissed about it.

And they understood well the glory and cockiness that comes with discovering that you kind of like knowing that you can kick a little medical ass. Whoot whoot, y'all.

So, there we were. The Man and I dropped our emotional protections and let go. We talked to others, we talked to each other - such rawness should have left me like emotional roadkill, but I came home feeling at peace.

It's okay by me if my psyche sometimes needs to shove my nose in what I'm most afraid of. I don't have the naivete - or the arrogance - that would tell me that children don't die. They do. I know exactly how big a child's coffin is, and how long it takes to shovel it in. So, I'll face up to that once in a while. And when I'm done, I'll take a deep breath and step away. Knowing me, I'll probably crack some sort of slightly inappropriate joke.

It's humbling to admit that my balance depends on me doing this. I'd like to think that I have more grace or more stability than the woman who needs to look through that particular window. But I seem to need the honesty that comes with that look at the rawest truths of my fears, and questioning them. Am I truly afraid of this risk, in particular? Or am I just having a scared-mama moment?

Balance in a shifting world depends on understanding your footing. And if the HitWGC folks offer to hold my hand while I peek under my feet, well, I'll take the help and be grateful for it. And then I'll go home to sandy, muddy children who greet me calmly. I've come back, I told the Toddles. Yes, he agreed. And I saw a waterfall.

I hugged him. I didn't, I admitted. Want to tell me about it? He did, and I felt the ground underneath me steadying, layering on texture and strength. Yes. When the Eldest wandered over, I was ready.

So, I said to him, how do you feel about tightropes? juggling? trapezes? Fascinated, the Eldest's eyes rounded, and then his shoulders pulled in. I don't want to be high up, he whispered. I don't want to fall. I hugged him. You don't have to, if you don't want to. And they will have a harness to keep you safe. But if you want to try it, there's a circus camp in town, I told him, and you would make a great clown...

..and maybe get some practice with balance of his own.


One of the highlights of the weekend was the comfort food: grilled cheese sandwiches and tomato soup, coffee AND hot cocoa AND danishes AND fruit AND gummy worms. Ice cream was served at every meal, excepting breakfast, with all of the toppings I could imagine. Tough times require loving food, say the HitWGC people, and I'd agree.

Here is one of our Imperfect comfort foods, newly reinvented as gluten-free, dairy and egg free:

Corn Fritters o' Love
serves 3-4

1 c. chickpea flour
1/3-1/2 c. flaxmeal, added until batter is appropriately thick and sticky (this one is trial and error, people. Sorry. But think of pancake batter: too thin vs. a thick cake batter)
1 pinch baking soda
1/2 tsp salt
1 pinch cayenne
corn kernels cut from 2 ears of corn (or an equivalent amount of canned corn)
1/4 c. diced red onion or scallion
1/2 c. water

optional but really recommended: 2 Tb chopped parsley, 1/2 tsp cumin seeds

Stir all ingredients together. Drop soup spoonfuls into hot vegetable oil, very very carefully. Fry on medium or medium-low (depending on the size of your burner), roughly 3 minutes per side.

Drain on paper towels.


Anonymous said...

I'm so glad you had this weekend. It sounds like the kind of intense you needed.

Rixblix said...

So glad you two had fun. Hard work fun, but fun, no? And I agree 100% that the allergies would scare me waaayyyyyyy more that hemophilia. We'll also be trying the corn fritters with some wonderful Illinois sweet corn.

Anonymous said...

I'm glad y'all had fun. Sounds like it was well-needed.

Joanne B. said...

Freakin' allergies man. Thanks for the laughs, tears too. I needed some of both today.

Miryam (mama o' the matrices) said...

thanks, guys. Who knew we needed to escape? And then get caught in traffic, and then get caught in a downpour, and spend FOUR and a HALF hours in a car??? And then get out of it.

Joanne, my very great pleasure. C'mon back and laugh at me sometime. Hell, laugh *with* me.

JG said...

I like bananas, coconuts and grapes.
I like bananas, coconuts and grapes.
I like bananas, coconuts and grapes.
(That's why the call me Tarzan of the Apes).

Cheers, and a standing ovation.

All Adither said...

Wow. Wow.

Thanks for the fritter recipe. I'd love to give that one a go.

Tzipporah said...


We are just starting to come to gribs with my husband's fibromyalgia. I can't imagine what it would be like to handle serious illness in your children. Or rather, I can imagine and don't really want to.

What an awesome mommy you are!

Julia said...

Just reading this now. With tears in my eyes. Cause you know I know where that edge is, and I think I know why you need to look.
Just wanted you to know I saw this, even if weeks late...

Miryam (mama o' the matrices) said...

Tzipporah, welcome to the blog. If you are just starting to learn about your husband's diagnosis, then I suspect you are learning how almost-ordinary you are as a spouse...kind of like me, as a mom.

Julia, yes. And I'm glad you read this one - glad to have admitted that where you could see.