Monday, November 25, 2013

Life hasn't been easy, and I am thankful

Recently, life hasn't been easy. It’s made me so thankful.

(That is not as disjointed as it may seem.)

I wish that I was generally grateful by default, but I’m not . . . which, I think, is pretty common. Maybe the resting state of not-perpetually-grateful is necessary for function, akin to the way that nerve endings become desensitized to a stimuli. In case you're not a science nerd, here's an example: when you put on a new sweater you may think Wow! This sweater is so soft! A few minutes later, the softness of your sweater is a thought of the past, and this is a necessary reduction. If you were constantly appreciative of your sweater’s softness, you wouldn't be able to finish a thought . . . “Ok team, in our meeting today---wow! Guys, my sweater is unbelievably soft!” Similarly, if you were perpetually thankful, your gratitude would be literally overwhelming . . . marveling at the wiring in your home that makes electricity possible, the drinkable water that comes out of your faucet, the strength and functionality of your non-broken legs, the fact that none of your fingers currently has a paper cut, etc.  

In this way, I've come to believe that the times that I am most thankful, most appreciative, are the times when I am existing in the neighborhood of a crisis . . . not really in a crisis, but close enough that I can see it, smell it, feel it in the hairs on the back of my neck. To use a mild example, it’s like when you are feverish and sick and can’t breathe through your nose and then suddenly you realize that your advil wore off a while ago , but your fever isn't back yet . . .and did you just manage to take a breath with your mouth closed?  That’s a moment in which you are thankful for the possible return of the health that, three short days ago, wasn't a blip on your gratitude radar. It’s like having that soft sweater pulled off, and you’re chilled and exposed, but only for a few seconds before you get it back and put it on and re-savor the softness and warmth, which seems even better than you remember.

Recently, life hasn't been easy. It’s made me so thankful

My five year old daughter can’t speak, but can communicate a great deal of her thoughts with her communication device. She often, however, shuns the device around new people and places, and she started kindergarten (in a new school) this fall. Sure enough, on many days I've heard that she was disinterested in using it in the classroom----but her teachers are annoyed by this (as opposed to indifferent). They know that she is capable and are quietly frustrated that she won’t demonstrate her abilities, and won’t communicate with them. I am thankful for their frustration, as it speaks to their investment in her, and their belief that she-can-do-more.

Maya meets with a reading specialist once a week. She brings home a folder of homework, new word families each week. We sit together to work on the worksheets, and while her focus is hit-or-miss, her knowledge surprises me every time. She will be a reader. She will be able to spell, to write. For a child who can’t speak, the ability to spell and type is invaluable . . . and I can see that she is on her way. I am thankful.

“Laundry mountain,” as I unaffectionately call the monstrous pile of clean-but-not-folded-or-put-away laundry on our couch, has grown to a size that leaves it often oozing off the couch. The kids help by running over, holding up pieces, and declaring their rightful owner (that’s Maya, holding up a sock and yelling “Will!”) . . . or by grabbing armfuls of clothes and toddling across the floor, leaving a trail as pieces drip from his grip (that’s Will). I re-gather and re-build the mountain, pulling out pieces as we need them. I’m thankful that at least most of our stuff is clean, and that dragging laundry around the living room has kept everyone distracted for long enough for me to slip away to the kitchen and get another cup of coffee.

Will has been growing, progressing, meeting milestones, and just being a “typical” one year old. It doesn't escape me, this typical-ness. I watch him toddle across the floor and find it amazing that anyone so small can walk upright. I see him use his tiny fingertips to pry open containers that I thought would keep him out, and I am blown away by how he enjoys the fine motor work that didn't (and still doesn't) come easily for his sister. I hear him, already, mimicking the words that I say to him, and using his voice to demand “more!” (or, more accurately,  “MORE! MORE! MORE!”) and I am thankful, for the challenges that he won’t have to face, for the way that his road has been paved and smoothed for easier traveling.

Maya has seen 3 new specialists this fall. Each appointment raises the anxiety of meeting someone new, a doctor who may or may not listen patiently as I try to summarize my child’s mile-long medical history in three-minutes-or-less. Each appointment forces me to square my shoulders and act strong enough to face new fears, as I lay down some piece-of-information-that-has-scared-me-enough-to-make-it-necessary-to-brave-a-new-doctor.  Each appointment is accompanied by various medical tests, with varying degrees of invasiveness, and so each has raised that am-I-doing-the-right-thing-guilt, the guilt that all parents face but somehow special needs parents seem to face more frequently, and with more on the line. But, so far, none of the issues that we've faced are life threatening, and I am thankful, so thankful.

The adrenaline crash after each new appointment leaves me in a tired-to-the-core, dazed-and-disoriented type of way. I am thankful for the days that Will naps and I get to doze, or for the espresso-and-sugar concoctions that warm my hands and wake me up (in theory, anyway) on the no-nap days.

Maya had a seizure today, a first, unexpected, with no warning signs or cause or hint that anything was coming. For 10 seconds, I was all-response-and-no-thinking. For 40 minutes of recovery, I held her and spoke calmly to her and didn't let her know that that everything had changed, that the ground beneath our feet no longer felt solid and strong, and that my seemingly irrational fears of the potentially-serious-health-complications-that-could-come-with-being-undiagnosed were now legitimate. I held her and I thought that I could have lost her just then. And for the rest of the day, I was thankful in a way that no parent-who-hasn't-thought-that-they-might-lose-their-child-before-their-very-eyes can possibly understand.

It’s been 2 days since my daughter’s seizure, and yesterday I found myself constantly watching her, searching for reassurance that everything is fine, that she is safe, that she is alert, that she is with me.  This morning my heart sped up when I saw her step unsteadily and stumble and tense, but she caught herself and kept walking and I saw that it was her “typical” unsteady gait and not a spasm or seizure.  I am thankful.

It’s been 4 days since Maya’s seizure and this morning I didn't think about it, or picture it, or have a little re-living it flashback for several consecutive hours . . . and I realize that time has started to work its magic (its healing-magic or its you’re-too-old-and-stressed-to-remember-everything magic , whichever one, they both work the same) . . . and I am thankful.

We spent four hours commuting today, because we still don’t have a bus. We hit a long stretch of heavy traffic, but when I said “Oh, look at this traffic!” Maya piped up from the backseat “Oh no!” and we laughed, and then Will laughed because we were laughing. We made it on time and no one cried.  In the afternoon, on the way home, we saw some Christmas decorations in a store window and Maya shrieked excitedly, and I was grateful that today there was no bus, and  that I got to share the time with her, to hear her first exclamation of holiday delight.

Tomorrow we return to the scariest of specialists, the neurologist, whom we haven’t had cause to visit in 3 years, 364 days. When I made the appointment it seemed the perfect distance away:  four weeks. Far enough away to let it fall to the back burner of my mind, but close enough that I wouldn't worry that we were waiting too long to be seen. I have been thankful for every day pre-appointment, for every day that I didn't have to agonize over potential future tests, that I didn't have to know what the doctor thinks about her seizure, that I can try to pretend this was something small that we can just ignore. I loved every one of these days.  I’m also thankful that whatever the news is, we have an amazing doctor, one who is smart and worth trusting. (And because I’m the type of girl who needs to have a back-up plan, I’m also thankful that we live in a big city full of smart second opinions, if need be.)

Having a child with an unknown medical situation means that life is lived in equal parts don’t-overreact-things-are-probably-fine and holy-crap-things-might-be-the-complete-opposite-of-fine. I am thankful for the other parents who share their stories, who remind us to celebrate the good stuff. I'm doubly grateful for those whose stories remind me to shut-up-and-be-thankful-for-every-freaking-second-because-it’s-easy-to-forget-that-the-seconds-are-numbered**. Earlier this year my friend Kate suddenly lost her son Gavin, a little boy who was the same age as Maya, also nonverbal, also full of spunk and life and love, and it spun my whole world around---I am so thankful for that (thankful for the reality check, obviously, not in any way thankful for the loss of Gavin). Because having a child like Maya can be a lot of hard work, a lot of heavy lifting (literally and metaphorically), and it could be easy to think “it’s not fair that things are so hard for us” instead of “we have no idea what tomorrow brings, so I will just be happy that today things are (our) normal, normal enough to feel exhausted by and tempted to complain about.”  

**As an important note, Kate is far too encouraging and lovely to think that anyone should “shut up and be thankful” . . . I am not that encouraging and lovely, and I tell myself to shut up and be thankful all the time J That sentence (and sentiment) belongs to me, not her. 

Recently, life hasn't been easy.  It’s made me so thankful. 

Happy (early) Thanksgiving. For those who are in the crisis zone, may this pass quickly. If you're in the neighborhood of a crisis, may your travels lead you in the other direction, without having to get an inch closer to the bad stuff. And if you're lucky enough to be in crisis free territory right now, soak it up. Don't lose sight of how soft your sweater is. 

Thursday, November 7, 2013

Running to stand still

I am overwhelmed.

This fall has been . . . hard.

I am on the treadmill of life, running  to stand still . . . and I’m not really even managing to do that. Every time I find my footing and start to gain ground, the speed picks up, and I am flailing.

It started with the busing. 

(The treadmill starts, a brisk walking speed.)

At the start of the school year, we had no usable busing. We were commuting for 4 hours a day (which includes diaper change time, parking time, traffic allowance time, and talk-to-the-teachers time). It felt unsustainable . . . Will would cry in the car, I slipped into driving with the assertiveness of an NYC taxi driver, and I thought about all of the work I could be doing instead of driving.  (I haven’t managed to bill a single hour since August, by the way.) I studied for exams by flipping through flashcards while I waited at stoplights. We play a lot of I Spy. My car became a great site for an archeological dig, with layers of toys (thrown over my shoulder at Will), snacks (thrown at everyone), and other random detritus (Maya’s a big fan of picking of leaves and then shredding them, so that’s fun). 

Two months later, we still have no busing, through a combination of DOE ineptitude (one (temperamental) person is in charge of all of this? And she doesn’t know what to do? And she doesn’t return phone calls or answer her phone? Really?) and the fact that a few weeks ago I stopped calling to follow up. Kindly save your “call a lawyer!”s or “I would just go to the office and sit there until they fixed it!”s . . . because I have and I did, and it hasn’t worked. I understand and appreciate your sentiments, and I would likely be very “Well-I-just-wouldn’t-stand-for-that-if-I-were-in-your-shoes” too, if I wasn’t all too familiar with the belly of the beast. Huffing and puffing and lawyers and noise sometimes works, and it sometimes doesn’t, and  . . . well, and then everything else happened.  And suddenly the fact that I’m in the car for a few hours a day was at the bottom of my problem list.

Maya’s transition to a new school has been rough. (Kick that treadmill speed up a few notches)

She is funny and silly and social. And defiant and strong-willed and anxious. She is a lot of work. While many parents have kids who are well behaved at school and then raise hell at home, we have (mostly) the opposite. (Don’t get me wrong, she can be a handful at home as well, but she works with me much better than anyone else.)  This has resulted in a large amount of communication with the school---chats at drop-off and pick-up, notes in the communication notebook, troubleshooting emails with teachers and therapists and the school director and the behaviorist, meetings (spontaneous and planned), and observations (her classroom has an observation booth—cool, right? I have spent a lot of time in that booth.). 

This is stressful, obviously. I worry about her lasting at this (very good) school. I worry about where she would end up if she wasn’t there. I worry about her long term education plan, as I would like to see her in a larger, inclusive classroom in the future, and her choices right now make it difficult for me to envision that happening. I worry that her staff won’t like her (not that they would treat her poorly, but that she would be that kid---you know, like if she’s absent the teachers would be like “Yes! A day off!”). I want them to see what I see---so much cleverness and silliness and possibility locked in a body that doesn’t work quite right and anxiety that makes her freeze up. I need them to believe in her, to enjoy her, to push her. I worry.

And she won’t use her talker. (Go ahead and increase the speed again.)

This isn’t a big surprise, but it’s frustrating nonetheless. As she speaks more and more, she pulls away from the talker. Whenever she is in a group setting (school, relative’s house, etc) she pulls away from the talker. She’s a sponge, a watcher . . you can see her wheels turning, but she doesn’t jump in easily. (That’s the way that I’ve always been, too---so I get it.)  Couple that with the fact that if someone new prompts her to use the talker, she may very well refuse on principle, or because she’s anxious (see above) and now it becomes a potential power struggle.

And then the medical stuff started. (The speed increases. I’m barely hanging on.)

The medical issues were all new (or new-ish, existing in lesser forms in the past but now coming to a head). We added two new doctors to our list last week (a GI and an endocrinologist) and tomorrow will gain a third (urologist). Every issue falls into the grey zone of could-be-no-big-deal-but-in-rare-cases-could-mean   . . . and that means a lot of tests and following things closely, because Maya likes to be a rare case.  She missed a few days of school while we dealt with one issue, missed another few days for appointments and illness, and I feel like we can’t catch a break.

I forgot about the panicked fear that accompanies new medical concerns. We’ve been at a medical cruising altitude for a while, autopilot on, just cruising along. I forgot about the way that a new medical situation shakes your whole world. I forgot about the exhaustion of introducing Maya to new doctors, the mind boggle that happens when they say “So, tell me about Maya” and I freeze, because where do I start? And what do I tell them? I can’t spend 2 hours listing every little thing---what if I forget to include some weird detail that turns out to be critically important? I forgot about the google dance---the way that I refuse to google symptoms and syndromes, because I don’t want to worry and I want to let the doctor handle it . . . but then the way that I feel a responsibility to google and research because I know Maya’s laundry list of signs and symptoms in a way that no doctor will be able to figure out during a consultation. 

I forgot about the anxiety that slowly builds as an appointment gets closer, the adrenaline rush of appointment day, and the no-amount-of-coffee-will-possibly-help crash that happens after you leave the appointment, regardless of whether the results were good or bad (or, most likely, ambiguous, with a follow-up to be scheduled in a few weeks).

Last week, we met with the new GI. Good appointment, thorough, and at the end we had created an action plan for moving forward. As the doctor and I pulled our chairs together to review the papers, Maya tensed up next to me and started to lower to the ground. I thought that she had started to lose her balance and decided to sit on the floor, but I looked at the way she was moving and something didn’t seem right.

And then I realized that she was having a seizure. 

(And the speed hits the max, and I fly off the back, and I fall to my knees, and I am done. Done.)

Maya is not a seizure kid. Prior to last week (a week ago today, actually) she had never had a seizure.  This was not on my radar.

In a former life, I was an EMT. I have emergency training, and (academically) I know seizures. I know to clear the space, not to put anything in the patient’s mouth, to let them lie in a safe position until it is done.

I was down on the floor in an instant and pulled her onto my lap. I spoke to her quietly but with an edge of panic in my voice.

I know that the vast majority of seizures are self-limiting, they end on their own. I have heard that the seconds feel long.

So, so long.

It was done quickly, but I can still see her curled, propped in the space between my chair and the examining table in the room, her hand shaking, her eyes staring ahead. And when it ended (quickly, maybe 10 seconds) she was disoriented, she didn’t turn to look at me, she was sweating and pale and nervous. She started to cry, and the doctor and I looked at each other in disbelief, neither fully sure what had just happened, both in slight shock. That minute of initial panic gave way to forty minutes or so of recovery, then hours of phone calls to the pediatrician (multiple times), the neurologist, Maya’s school, family (it was really fun to call Dave at work and break the news).

The seizure was the thing that stopped the treadmill. The straw that broke the camel’s back. The thing that brought me to my knees.

I surrender. I have been beaten.

But there’s an odd relief to surrender.

With every issue, the one that preceded it seemed smaller. Driving to and from school seems like a silly problem when your child starts behaving in ways that exhaust everyone, to the point that you worry whether she will alienate the people that (desperately) need to be in her corner. Bad school behavior seems small when you have concerns about your child’s health, are starting supplements, running tests, and googling potential new issues.  And the stress of running tests and meeting new doctors for potential health problems that will be manageable with supplements or medicines or surgery or whatever suddenly seems very small when your little, ponytailed five year old has sunken to the floor and is seizing in front of you.

Very small. So very small.

The problems are still there (and more, bonus run-of-the-mill problems: piles of laundry, an apartment that devolves around me much faster than I can attempt to clean it up, bills that aren’t paid on time, etc), but they seem so much less important. (And I also know that the past year or two of medical cruise control were a luxury that some families don’t get.)  Now I have the biggest problem, the fear of medical unknown. I haven’t been nervous about Maya, medically, in years----but this is the reality of an unknown genetic syndrome. It’s the gift that keeps giving. Will she have more seizures? I don’t know. Are seizures typical of her genetic syndrome? I don’t know. Could they increase in number? In severity? I don’t know.

I know that tomorrow we will meet a new doctor and possible run some tests, and that at the end of the month we will see the neurologist and possibly run some tests. More importantly, I know that tonight, we are all home and safe. I know that Maya had a good-ish day at school, and that Will didn’t cry at all during our commuting time.  Maya was silly after school  and Will is toddling everywhere with his little Frankenstein-ish waddle. The kids are tucked in and dinner is done and right now, things are quiet.  Tomorrow life will go on, and I’ll jog to stand still, but I’ll probably fall a little further behind and that doesn’t seem like a big deal anymore. I remember now that I can’t take anything for granted, even the crappy-too-fast-treadmill-times, and I’ll will my feet to keep moving and hum a little tune to myself and remember that nothing is forever, in more ways than one.