On Writing and Thanking and Writing

I've had a notebook ever since I was old enough to write. For twenty years I have had a favorite kind. (I love the plaid Clairefontaine ones, medium sized. And there are only certain pens I like to use. Yeah, I'm fussy like that.) I always have one in my bag. Paper and pen help me clear my mind like therapy or a good cry. I get ink on my hands and callouses on the fingers that clutch the pen, and it feels like I've worked my muscles, as if I went for a long run. I've written my most secret thoughts down since I was a child. Like Harriet the Spy, it's a compulsion for me. Most of the time I didn't even know I was writing to figure things out. I write to remember. Much of my memory is in a foot locker in my bedroom, a real eyesore of a hand-me-down that my husband would love to get rid of. I can't reread the dozens of notebooks that are locked inside - it's too embarrassing and painful. Just looking at the various phases of handwriting - especially the big, round, affected teenage girl handwriting I taught myself - or flipping through one entry after the next about whatever crush I thought I'd pine for until the day I died makes my face feel hot with shame. But I can't throw them out either. That would be like pressing the delete button on 25 years of my experiences. It's all in there. Even when I knew my privacy was being invaded by people who just couldn't resist snooping, I had to write it all down. I related to Harriet on so many levels and read Harriet the Spy so many times I know whole chunks of it by heart. 

I switched to blogging about twelve years ago. I had just met Johnny and we were both pretty crazy. Crazy in love with each other, but also just plain crazy. He was 22, I was 28, and we were both all kinds of intense, unstable, and dramatic. I filled up notebook after notebook either raging about how much I hated him or waxing poetic about how in love I was. And I will confess now that I started blogging instead not because I wanted the world to know about all my personal goings-on but because typing on my computer instead of scribbling furiously in my notebook meant I could be utterly, self-indulgently, and virtually verbose at work too and no one would know I wasn't the world's busiest employee. (My work ethic has since improved considerably, for the record.)

The bad news about taking my dirty laundry to the internet back when blogging was just getting started is that the tools weren't that sophisticated, or if they were, I was not sophisticated enough myself to know it. There was no Facebook then, no Blogger or WordPress. It was even before MySpace. I was using LiveJournal, which was basically Drama Central for twenty-somethings at the time, and early adopter though I may have been, at the beginning I didn't know how to post "friends only."  I never censored myself because after all, it was my journal. You don't like what I have to say? Well then don't read it! I was never especially popular and I had absolutely zero self-esteem, so I didn't think anyone would care enough about what I had to say to bother with my ramblings. But I was wrong. My silly journal got linked around and people who should not have been reading were. I hate confrontation, so I didn't waste any time putting all my words on lock-down to avoid any more drama. 

After that, I blogged privately for a few years. But I have to admit that there is something appealing about letting it all hang out. When I write, I sort out my feelings. I figure stuff out and am able to move on. When I write online, I also feel like I've shared my thoughts and my life with everyone who owns a computer. It's a heck of a lot easier than talking, especially about the tough stuff. I'm not too good at that.  But I'm so in my head that I assume - often incorrectly - that people know what's going on with me, as though tossing my nonsense out to the interwebs was the same as meeting all my friends and acquaintances or coffee and a good heart-to-heart without having to actually open my mouth.

Recently my blog has been getting a lot of hits, and now I am promoting it on a Facebook page that I created just for this purpose. I do that partly to keep it separate from my personal Facebook page; I have new readers who don't know me personally. But even more, I'm secretly (and now, not-so-secretly) hoping that some neurological expert will read about Teeny and will offer up a simple solution to all her medical problems, or that some wealthy reader will want to be her benefactor (okay, or my sugar daddy), or that some hotshot agent (who has nothing better to do than read some working mom's online diary) will discover me and want to publish my sure-to-be-a-bestseller memoir. But I don't want to have to say any of this out loud because it's asking for too much. I want the universe to just know.

Two weeks ago someone was frustrated with me and lashed out with a very judgmental comment about the kind of person I am. We were having a conversation in which I did ask for help, and I was instantly sorry I had. I felt like I'd been slapped in the face. She basically said that I was the type of person who would impose upon others without a second thought, just expecting that they would drop everything to help me. She was, in my opinion, entirely off the mark, and I was pissed off. Even more, I was hurt and defensive. I promptly proclaimed to one and all that I would never ever ask anyone for anything ever again and fled for home, in a tornado of self-doubt. 

But no. That isn't me, and I know it. It's hard for me to ask for help. Over the years I've developed a strong sense of pride and I'm fortunate to be able to support myself and my family with little help from others. I am 40 years old. An adult, a spouse, a parent. I shouldn't rely on others and I put a lot of pressure on myself to do and to achieve so that I don't have to. But it takes a village, right? I don't ask for much, so when I do, the people who love me usually know that I really, really need their help.

I am far more courageous and honest online. I'm able to share my highest highs and lowest lows, when doing so in person makes me feel like I'm alternately bragging or complaining, or worse, hinting that I need something from someone. In person, it's easier to say very little about myself. I talk a lot, sure, but not always about anything very substantial. 

I know it's a little crazy that I would rather blog than confide in a friend. Even I think it's odd that I am a completely introverted oversharer. It has gotten easier over the years - certainly having taught high school made it much easier. I often tell people that once you can stand up in front of 25 teenagers and get them to listen to you, you can talk to anyone about anything, and it's really true! Even so, I still have to give myself a pep talk when I walk into a room full of people and convince myself to talk to at least two people or to introduce myself to someone I haven't met yet. It's even harder for me when friends and family ask me how I'm doing. And the weirdest thing is that I have trouble updating people - even those I really love - about my life before I've had a chance to write about it.

On the other hand, I don't usually think about the fact that sometimes people I work with, neighbors, casual acquaintances and Facebook pals are people who read my blog and have access to very, very personal information. They read my thoughts and my fears, my successes and my struggles. And I know I'm putting all of that out there, but at the same time, I am essentially a very private person. I generally don't bring up Teeny's issues unless someone asks me about her, and I certainly don't blab to everyone I see about all the challenges in my life. But oh yeah, I was the one who invited the world into my diary. I want you all to know. I just don't want to have to tell you. That part is too scary. 

So imagine how I felt when two of my coworkers set up a surprise fundraiser to cover the cost of Teeny's genetic testing I wrote about here. I know these two women professionally and to a lesser extent, personally. I have tremendous respect for them as animal advocates and as moms of young children. I was vaguely aware that they read my blog but I am really not able to gauge people's interest level well - seems there are some really dedicated readers, and at the same time some of my very closest friends and family members are not readers. 

Anyway, these two women worked fast. They spread the word far and wide before I even knew what was going on. The email they sent me on Thursday morning tipping me off sat in my inbox for hours before I had a chance to read it. When I did, I was standing in someone else's office in another part of the city. I was just scrolling through emails on my phone and I was caught completely off guard. Absolutely stunned, I didn't know whether to laugh or cry -- or throw up. I felt so grateful. And I was terrified. I worried that people would think I put them up to it, or that no one would want to contribute. Worst of all was that I had no idea how to react. I wanted to protest. I wanted to apologize. It was one of the nicest things anyone has ever done for me and I felt completely undeserving. For me, feeling needy is just about the worst sensation in the world. I hate thinking I can't do everything by myself. But I can't. I do need help. And these women wanted to help. So I just said thank you. And then I needed to write about it. 

If you're one of the nearly 150 individuals and families who participated and contributed so far, thank you. In three days you achieved 150% of the original goal and there is still more coming in. My jaw dropped time and time again when I saw how many people pitched in to help. Friends, neighbors, colleagues, acquaintances. The president of the non-profit I work for. Board members. Friends' parents. Some of you helped when I know perfectly well that you are struggling yourselves. Again, I thank you. And if you're someone who wanted to participate but could not, thank you. Maybe you're one of the people who reposted the link so others could read about Teeny and contribute. That too is a tremendous contribution. If you are a friend to our family who has lent a hand by calling, texting or emailing to check in knowing it's likely that I won't reply right away, by sharing your story or your child's story with me, by hanging out with us talking about politics, movies, the weather -- anything other than cerebellar hypoplasia, by playing board games with us, by dragging me out for coffee or a manicure or just a walk, thank you. My family thanks you all. One day, I know Teeny will thank you. We promise to honor your gifts, which are supporting us in so many ways. Your gifts are covering the genetic testing I wrote about last week, and even more. More of our once-impossibles are now-possibles, thanks to you. Every gesture feels like a hug, a vote of confidence in my ability to lead Teeny and our family through this. So please stay tuned. This kid is capable of big things. I just know it. And I'm gonna write about it. 

Maybe one day Teeny will write about it, too. 

Gene Genie

This week Teeny had her long-awaited appointment with a geneticist.

We'd made the appointment right after her MRI, and at that time it was just another thing we were supposed to do to rule out something very scary. Every step of this whole horrible journey has been suggested to us to rule something out and with every test and every report and every exam, she ends up testing positive for something no one thought she had in the first place, which really, really sucks. Needless to say, I was not especially looking forward to this visit.

Children's hospitals try so hard to be cheery but despite the bright colors, teddy bears, and balloons, they are torture for everyone. The parents dread being there because it's the last place anyone wants to take their child. And the siblings think they're at a party for every other kid in the world but them. I walked in with lead feet and a heavy heart because this was the place where Teeny had her MRI. It was the very Omphalos of bad news. I never wanted to come here in the first place, yet here I was, going back for more. Bee, on the other hand, saw all the sorry attempts at cheerfulness and was excited by it all - and jealous. We walked past the sad hospital shop where plush dolls, games, and kids' clothing were for sale. "I wanna go in there, Mama," she demanded. When I ignored this request, she raced up the ramp, happily checking out the colorful murals and paintings. Then she stopped at the desk where we had to sign in and pointed at the floral arrangements and mylar balloons shaped like Mickey Mouse awaiting delivery to patients. "I want one, Mama," she said again and again. I explained that they were for the kids in the hospital, but, too young to be more than fleetingly empathetic, she was just envious. 

We checked in and the security guards handed us our guest passes. Passes? I remembered my club days, full of guest lists, passes and wristbands. They meant excitement and fun. Who wants a free pass to a children's hospital? This is a party you couldn't pay me to crash if I didn't absolutely have to. I tucked the bizarrely pink papers into my coat pocket and tried to remember where he said we had to go. 

All the way down the hall and then right, walk straight and take a left at the north elevators, but don't forget to stop in the billing office, the last door on the right. We stopped there to register and sign away our lives and our paltry savings. The walls were painted with rainbows and the chairs, each a different color, looked like a box of crayons all lined up one next to the other. There was a huge tank in there full of big, active fish. Our girls were mesmerized, so we were able to fill out paperwork, photocopy insurance cards, and pay co-payments, all without a peep of protest. 

We continued on and our surroundings got less and less happy, less and less vibrant. By the time we made it to the central elevators, the paint was peeling from the ceiling and the floor looked like cheap linoleum. Up seven flights and down another hall and then into a stuffy waiting room with more linoleum, dirty chairs and a TV/VCR setup that was so old we couldn't even work it. It reminded me of an old insane asylum, like the one in One Flew Over The Cuckoo's Nest. We took off our coats, cracked a window and waited. All the coaching I did with Bee about picking out special toys to keep her busy was for naught: the iPad sat in my bag. She wanted nothing to do with it or anything else we'd packed. Teeny was fussy too; I tried to nurse her but she was wriggly and bitey so I put her down to crawl on the floor. I looked around at the dingy room. No toys. No posters, no murals, nothing. I couldn't help but think about how we keep ending up in these crappy, unrenovated wings of very fancy hospitals. As I sat there, I developed a theory that other, more common health concerns get the face lifts, the paint jobs, and the new furniture first. This particular hospital complex clearly threw less time, money, and effort into the offices for the rarer diseases. This waiting area was as depressing as the one at our neurologist's office. I was not impressed.

The genetic counselor was very thorough. She wrote down a lot of information and sketched out a family tree with a plastic tool that had different shapes cut out in it. Squares, diamonds, circles all indicated different ways people in our families were related and scribbles under them were shorthand for any of the health issues we relayed to her. Soon she had woven an elaborate web of shapes and notes two pages wide, yet our information felt woefully incomplete. I was adopted and my birth mother was adopted as well, so I know next to nothing about my genetic makeup. My husband's birth father passed away when he was much younger; his siblings have a different biological father. There a lot of unknowns for both of us. Still, we both knew enough to say emphatically that neither of us has or had anything like cerebellar hypoplasia in our genetic makeup.

After what felt like forever, we saw the doctor. Both kids were hot and tired and cranky by this point, but he was in no hurry. He talked for a long, long time, slowly and in a hazy monotone. After a while it took tremendous effort to listen because my inner adolescent heard nothing but Bueller... Bueller... Bueller while my outer mama was being used like a jungle gym with two overtired and undernapped kiddos clinging to me for dear life. 

It's a good thing I'm pretty well read about our situation because, nice as he was, it was hard to listen to this guy. When I am not fully engaged in a conversation I'm having, I start to notice quirks in people's speech,  grammatical errors, tics, or phrases they say over and over. I get so caught up that I barely absorb a word they say. This guy was a big fan of "Let me put it this way," and "Let me just say this." With the unbearable heat and the squealing children, I found myself counting those phrases before I handed Bee to Johnny and suggested they go investigate the vending machines downstairs. I jerked myself awake and attentive again. Luckily he hadn't said much I didn't already know, so I was able to be as tuned out as I was and still follow the conversation and ask relevant questions.  And it's a really good thing that I am practicing patience and acceptance around this whole issue too, because what I did glean from the geneticist is that he has no idea what's going on with Teeny. Just like everyone else. 

This is what I understand right now, in layman's terms: Hypoplasia means an organ is under-formed or underdeveloped, so cerebellar hypoplasia means a small, underdeveloped cerebellum. Teeny also has a short pons, so technically she has pontocerebellar hypoplasia. Cerebellar hypoplasia (CH) is also the name of a genetic disorder, the primary symptom of which is a small cerebellum. This neurological impairment seems to be far more severe than what Teeny has.  Pontocerebellar hypoplasia (PCH) is the name of a genetic disorder that is so grave, so truly terrifying that I don't even want to type anything about it here. Go ahead and Google it if you are curious, and read about the six or seven different types. They are all horrific and, ultimately, fatal in infancy or early childhood. Both CH and PCH are accompanied by a wide variety of other issues, essentially none of which we see in Teeny at all. Its possible that she has a (relatively) mild case of one or the other. But while no one wants to commit to anything without doing more testing, I get the sense that it's probably neither CH nor PCH.

Which is a good thing. If it's not genetic, it was caused by some static event, or "insult" as the geneticist called it. Everyone seems to agree that whatever it was happened in utero, mainly because I knew from the moment she was born that she was different. So then, what was it? The MRI does not show evidence of a stroke. If it's not genetic and it's not a stroke, there is a range of other possible causes for this insult, but it's not likely that we will ever know. But it doesn't really matter. What matters is that a static event, whatever its nature or origin, means nothing is changing, and that whatever Teeny has is not progressive or degenerative. Because of the brain's incredible plasticity, it means she has a chance at a full recovery. We don't know how likely or unlikely that would be, but it's possible. So obviously this is the least horrible scenario, and the only way we can be sure this scenario is ours is to do the extensive genetic testing that rules everything else out.

We have one team of doctors who think it is a static event but want to do the CH/PCH panel just to be sure. We have another team who thinks it *is* something genetic but not CH or PCH, rather something related to something very obscure and complicated that I don't really understand. If it's the former, as I said, the prognosis could be positive. Should it be the latter, I have no idea what we'd be looking at.  But of course I want to know whatever is knowable. Who wouldn't? 

The counselor and the doctor said we had a lot of options, so we agreed to do all the genetic testing possible. I consented to having Teeny's blood drawn, knowing that she is not always an easy patient. We made our way back to the happier part of the hospital, counted brightly lit moons and stars on the elevator ceiling, and then stopped for a few minutes at the four-foot copper apple made entirely of pennies. Climbing on and around it seemed to recharge the girls' batteries. But moments later we were at the mercy of the phlebotomist, who looked less than thrilled to see us. And Teeny protested loudly, but she was brave. We were all very glad that we got to go home after that.

All done!

The counselor called me a day later. I was home with Teeny in the middle of a PT session but I picked up anxiously. She told me to get a pen and then said that everything we wanted to do all together at one particular lab would be more than ten thousand dollars. I could feel myself turn pale and I almost dropped the phone. The CH/PCH panel and one of the others we wanted to do are both apparently some kind of insurance exception, she explained. This particular lab is notorious, she said, and it doesn't even bother to bill insurance for these panels because they won't pay out enough to make it worth their while. There were other options, she assured me, and she was going to do some more research on some alternate panels and different labs and she'd get back to me. In the meantime, she said, she wanted us to come back on Monday for another blood draw, to do yet a different and more basic panel on Teeny's chromosomes that might indicate problems. This one would be covered for sure. I acquiesced and hung up the phone.

I was stunned. Ten thousand dollars? And $3,975 just for the CH/PCH panel - the most crucial one. Are they kidding? I always pitied the parents who had to hold fundraisers for their kids' health issues but this is the first time I've been faced with a bill like this myself. What are these labs and hospitals thinking? Don't they know how difficult this is for the families involved even without adding this insult to injury? What about the fact that we are a one-income family? Don't they know that I have private preschool tuition to come up with? A mortgage to pay? Get in line, I said in my head. 

As I relayed this new development to Johnny, I wasn't sure how upset to be. Bottom line, if the genetic counselor can't find us an alternate, the testing is going to be cost-prohibitive. And that is what it is. Of course this kind of information will be helpful in determining a course of action. If we're talking about PCH, it could be life or death. It's very serious stuff. But I don't know. If we have to, we will find a way to make the testing happen with or without the help of insurance.

In the meantime, it got me thinking about genetics and how in this area, my life has been one giant question mark. So when I learned about a website that for $99 offers genetic testing via a mail-order spit kit, I signed myself up. A pal of mine did it recently and learned a lot about his ancestry and various medical predispositions. Who knows what it will uncover about me. Am I really Jewish? WillI die of a stroke at an early age like my mother? And maybe, just maybe, it will show some addition or deletion in a gene that might be in some way connected to neurological impairment. I doubt it, but you never know. For 40 years I've been in the dark, so I'm curious -- and a little scared -- to see what light will be shed.

And what if I ordered another spit kit... for Teeny?