Category: notes from a house frau

“And I Start to Complain When There’s No Rain”

Today we feel fantastic. We walked a giant loop today — all the way to the butcher’s in another neighbourhood and back again. Just about two hours, the RRBB and I, and he only cried once along the way. On top of that, he’s still sleeping in his bassinet of all places, and not on me, so I am taking advantage and killing items one by one on my to do list like they are a shooting game at the Ex in August. Bam! Checkmark. Bam! Checkmark. Bam!

I saw the kidney doctor this week and my blood work keeps improving. My creatinine is the lowest it has been in months, and there’s something called albumin that was well out of whack, which has also returned to normal. That’s the good news. Of course, because it’s me, there’s also bad news. Once I stop breastfeeding, and both the SFDD and the kidney doctor recommend (or are encouraging me to stop) weaning him at six months, there’s other medication that I’m going to need to start taking. I’d really like to do the entire year but we have to balance the continued health of my kidneys, which are still being damaged, along with still having some high blood pressure, from the preeclampsia.

Apparently, I could have high blood pressure for the rest of my life.

I am not happy about this. In the entire history of my disease, and that’s twenty years of fighting it now, I have never had high blood pressure. So, it seems I have to do all kinds of things to try and regulate it outside of medication: eating better (yeah, right, while on prednisone; give me strength), getting exercise (walking, walking, walking and starting back at the gym in March), and taking supplements (garlic, etc). Once some of the baby/prednisone weight comes off, hopefully it’ll improve too, but the end result is that I’ll have to take something called an “ace inhibitor” for the rest of my life. It’s protects your kidneys from the damage done by too much protein passing or something. They are blood pressure meds. I am disappointed that the preeclampsia has done so much damage and is taking so long to clear up — that it might never clear up is even more upsetting, but what would be worse is losing my kidney function entirely, and ending up either on dialysis or needing a transplant. We don’t need that kind of tragedy, we just don’t.

It’s been a long, long road back. Now that I have some perspective, and am that far away from everything that happened (next Thursday it’s 20 weeks since I was admitted to the hospital), and the baby is a little bit older, the whole world seems, well, less oppressive. Also, I was thinking about how hard winter feels generally — when you have to get up everyday and go out in it, when you don’t have the freedom to curl up on the couch and snuggle with a baby if it’s just too daunting — and usually by this time, I am grumpy, aggressive, angry and really, really tired. Also, I generally go through my days with a giant ball of panic that sits right in the middle of my chest. Panic about work, about getting stuff done, about work politics, about my career (or lack thereof), and when I got my new job, all of that sort of disappeared — sure, it was stressful, but I loved every minute of it.

So, I’m feeling conflicted these days. Now that I am feeling so much healthier, what kind of pressure can I put on myself to be better, to do better, to make better use of my days. A friend came over the other night and I was explaining to her how I feel, some days, like a very typical newish mom. I fill my days with “busy work” because I’m not the sort to sit still, but is this “busy work” worth it — should I still be trying to rest instead of speed balling through to recovery. It’s hard. I’m hard on myself. I set high, lofty goals. I demand a lot, and it’s this pressure that probably caused the disease (among other reasons) in the first place. It seems that I don’t know how to be unless I’ve got the giant, Pilate’s ball-sized stress in my chest.

It’s an unhealthy way to live. I know this. And I don’t put this kind of pressure on anyone else in my life; in fact, just the opposite. I want my friends and family to happy, calm and content. I don’t know why I can’t put the same kind of goals into perspective when it comes to my own life. There’s a part of me that takes everything so personally — that holds on to meaning that’s an impression and not truly a reality. Again, it’s not a healthy way to live. It’s not something I want to impart to my RRBB either, and certainly something that my RRHB finds hard to live with.

But back to the “typical mom” scenario. My RRHB has been doing a play all week with his new musical endeavor, Detroit Time Machine, and so I’ve been with the baby by myself a lot. For the first time in months, this is actually something I can handle. I’m not too sick to do it by myself. In fact, it’s been actually kind of fun. So, we were looking for something to fill our days and I decided we’d head to the mall (“mecca” with a small “m”). I adore the mall. You can take the girl out of the suburbs but sometimes, you can not take the suburbs out of the girl: case in point, Sherway Gardens. It’s just so, lovely.

So, the baby slept and slept and slept, and I refuse to wake him so it was late when we left the house, after 2 PM. I got myself all worked up that there would be traffic and he’d be miserable and maybe we shouldn’t go at all, etc. But he was perfect and only fussed a bit on the way home, slept while I walked around, and all I saw everywhere I looked was other moms — babes unbundled with semi-bored expressions on their faces. Some were even quite haggard (and if you’ve seen my hair, it defines “haggard”). And as I sat down, eating an ice cream cone and just people watching, the giant ball of stress dissipated. I don’t know what happened. I just took some deep breaths and enjoyed the moment.

I know this seems silly — but it’s all a part of how I think I’m changing because of the baby. Yes, I did talk my girlfriend’s ear off when she came over the other night because singing and talking all day to the baby isn’t necessarily conversation. But, I am also enjoying the silence a lot more than I ever have before. I’m enjoying everyday life when it’s not crammed into an already overstuffed weekend. I’m enjoying the new sounds the baby’s making. I’m enjoying the winter. I’m enjoying not working. Don’t get me wrong. I love my job and can’t wait to go back, but I’ve never not worked, and even when I haven’t slept, when the baby’s cranky, when I’m all alone and feeling the pressure of taking care of another life, I’m still more calm than I ever was a year ago. And maybe that’s what’s contributing to making me better too. That and a little retail therapy. It seems I just can’t stop buying soap.

I Have Always Slept With The Door Open

This is how I spend much of my days. Dressed in scrubby pajama-like clothes, hair — a complete disaster, some sort of food or other mess stuck to my forehead, and a baby on my lap. Usually he’s sprawled out on My Breast Friend, the awesome-est breast feeding pillow of all time, or on my elephant pillow that Sam gave me for upstairs, as I am either playing Scrabble on the iPad or reading. If you can believe it, we had company over this day. Yes, this is me “dressed” for company. I have owned that stolen sweatshirt for many, many years… it’s actually embarrassing how old it is, which made me think a lot about what I wanted to write today: musings on the subject of permanence.

I know the above state is not permanent. That the baby won’t always want or need to fall asleep on me or will even be an infant for much longer. The time goes by so fast. He’s already 16 weeks, and will reach his 4-month birthday in about ten days. So, he’s ever-changing. Whether it’s a new sound he makes or a funny thing he does, it’s delightful to see his personality emerge. He’s an extremely happy baby. He maybe cries/fusses for about 15 minutes a day and usually only when he’s overtired, so if we can catch him on the wave into exhaustion, he doesn’t cry at all but does demand A LOT of soothing before crashing into sleep either on me or my RRHB, as noted above.

But when I was lying on the massage table after restorative yoga yesterday, and the RMT was pulverizing my back to try and get at the massive knots, she said that the best way to combat the muscle issues was to drink more water, get exercise and stretch it out. In my head, I thought, “And when does one have time to do ALL of that?” Plus, blogging, plus walking, plus taking a shower. Her actual words were: “I know having a baby can sometimes be time consuming…but…” And then I asked the dreaded question, “Do you have kids?” “No,” she replied, “I have friends that do.”

And therein lies the ultimate dichotomy: the complete disconnect between how much time — and I am surely at fault here for my own misconceptions before having RRBB (I am not just being critical) — a baby takes up in your life at this stage. The 2.5 hours I spent at yoga and getting a massage were the ONLY moments I have been away from the baby (with the help of the RRHB) in a week, since the last time I went to restorative. And next week, because my RRHB is doing a play, I will be taking the baby with me to yoga, and as well the week after that because he’s back doing some work. I’m even taking the baby to see the kidney doctor on Monday. I have no choice. And this is the permanence I have been thinking about for the last couple days.

Way back in the way back, when I used to be friends with a woman who once dated my RRHB, they were discussing kids. Keep in mind, we’ve been together for almost 13 years so this is a long, long time ago, and I’ve known my husband since I was 15. Annnywaaay, this woman said that it’s no big deal to have a baby in your life, you just mold them into what already exists, the change isn’t that drastic. This was the argument she was using to try and convince him, at 25 or so, to have a child with her. He didn’t buy it. And I am completely admitting my own ignorance. I thought the same thing. That they were like cute little bits of baggage, dress them up, pack them neatly, and cart them off. Yet, despite how utterly portable RRBB is at this age, that doesn’t mean that the change to our lives is anything less that completely and utterly drastic, and, yes, permanent.

Yet, the idea of swift, permanent change isn’t unfamiliar in my life. My mother’s accident when I was fourteen; disease at nineteen, multiple job losses over the years; etc. I know how to respond to tragedy. It’s almost always in the vein of Keep Calm and Carry On, push it all down, deal with it later, one day in front of the other, victory garden kind of stuff. I am strong, apparently, a “defeater of death” as one friend commented via email the other day, and it shows in especially hard situations. I can handle just about everything. Funny how all it takes is a wee, little 13-odd pound cutie-patootie to break me. And break me often. The disease didn’t kill me. Losing my mother didn’t kill me. All the other tragedy in my life only served to make me introspective and feed the desire to write novels where everyone dies in extremely horrific ways — novels that will probably never get published. But the baby, wow, that’s change on a whole other level that I was not remotely prepared for.

If he’s tired, cranky, can’t sleep, can’t be soothed, has an injury, anything out of the ordinary (he had a rash the other day), and I go bonkers. I worry non-stop about it, can’t stop talking about it, wonder how much I’m doing wrong on a daily basis, and honestly turn myself inside out until I am a little blurry around the edges — you know, like that camera lens they use to make older actresses all soft and wispy. Even my mother-in-law has laughed and told me that I need to temper the worry a little. And she raised my RRHB who climbed the antenna of their house at 2 years of age, walked at 9 months, and rolled over at a week (a week!).

I suppose what’s missing from this scenario, as compared to everything else I’ve dealt with in my life, would have to be the idea of tragedy. There’s nothing tragic about our son with the exception of how he came into the world, in the sense that giving birth to him almost killed me, and we pretty much celebrate everything about him. It’s a sense of happy contentment I have never known — staring at him as he sleeps on me for the seventh hour in a day is very different from lying in bed crying because you miss your mother so much even your teeth ache from the loss. They are both permanent. I will never get my life back exactly as it was pre-baby. My kidneys will never work as well. My body is forever changed (have you heard me complain about the awful stretch marks, seriously, I look like a tiger). My mind never strays far from him. I think of so much in relation to him that one would think I was the only person in the world to ever have a child (how ridiculous is that?). It’s all new for me, a new kind of coping, one where there are still plenty of tears, because, hormones. But I can laugh at myself a lot more now. I am trying to take things less seriously, less personally, because those are skills I want to impart to the baby.

Mainly, I don’t want him to know the “me” before him, in a sense. I want him to know the me that celebrates his existence in my life, the person I’m evolving to because we had him — there are things that I have come to know, about the idea of happiness, about what I need in my life, about the choices I’ve made, that are all a direct result of being pregnant, going through the whole WG attack, and coming out the other side. Yes, I am even stronger now, I suppose, which is actually kind of irrelevant. What’s more relevant is how permanently and fundamentally different I am now. How permanently different our lives are now. We make decisions because of him, for him, around him, and that’s okay. It’s not just about us, even though the “us” that existed before (and that we had a glimpse of the other night when we went to see a band at Lee’s Palace; twenty years I’ve been going there, sneaking in before I was of age, sneaking out well after) needs also to evolve, it’s definitely a richer, broader existence.

We were looking for ways to expand our lives before the RRBB was even an accident waiting to happen. We were thinking of moving to the UK for a year, just to live somewhere else, swapping houses with another couple thinking of doing the same. My RRHB has been constantly evaluating what kind of work he’d like to do beyond the music, and needed time to explore his interests, and decide whether or not that involved going back to school. Funny how life sometimes decides things for you: the disease made me focus more on writing, on books, things that I had always loved but never imagined would turn into a career; losing my mother made me self-sufficient in ways that I wish I didn’t have to learn but did; the baby has opened up my life and my concept of happiness in ways I never imagined or expected. All of these things are permanent. All of these things are drastic. All of these things are worth considering. All of these things make me who I am — and even if I feel a little lost these days, there are anchors there that I never knew existed, and I am sure, even in a fit of hormone-induced tears, half-naked on the couch, exhausted, I am quite convinced that I won’t float away.

I wasn’t so sure a month ago.

What A Difference A Day Makes

I saw the SFDD today, and what a difference a couple of weeks makes. The meds have been in my system for longer, and the disease is finally, FINALLY starting to respond. My kidney function is still elevated, but that could be damage from the pregnancy and the preeclampsia — I just have to accept the fact that things will not go back to my “normal.” As as my wise, wise RRHB said last night when I was a little teary crying, “I just want to feel like myself again,” “But you aren’t your old self, you’re a mother now, too.”

So often, I am concentrating on the things that I’ve lost — my health, my brain, my freedom, and not resenting the losses, per se, but learning how to adapt to this new life is taking a bit longer than I’d imagined it would. I’ve been reading a lot of interesting “mom” articles lately, and for the most part, they infuriate me. Case in point: “And Baby Makes Three…” and here’s where it all starts to fall down for me:

It’s nothing short of impressive, the way these new mothers embrace their changing bodies as a home for baby to grow in and feed from. The way that they innately know what their baby needs and can recognize the meaning behind every sound or gesture and can usually provide what’s needed to soothe them.

While this isn’t an incorrect observation, what the author fails to realize is the hours spent listening to your child wail, the many different ways of bouncing, rocking, walking, talking, feeding, feeding some more, and feeding some more before a mere piece of the puzzle — how to separate a “tired” cry from a “hungry” cry — reveals itself only to change radically the next day as your RRBB’s brain changes from, literally one day to the next.

For me, this is just filler content. Why even write this article if you don’t have anything remotely remarkable to say? Why capitalize on a cutsie, overdone, cliched head to go on to say how remarkable new moms are? I know I’m being harsh — but I think this piece would have been a lot more effective had the blogger job shadowed a new mom for an entire 24-hour period versus dropping in via Auntie mode, which, I too, mistakenly thought having a full-time baby would simply be an extension of.

And then I read Katrina Onstad’s piece in the Style section about how Spanx now has maternity options and threw up a little in my mouth. Pregnancy ravishes your body enough — I’ve gained weight that I can’t lose because of the prednisone, have stretch marks that are truly, truly awful, a c-section scar, and a pooch. I can’t imagine the damage you’re doing by forcing your body to not look pregnant — how does the baby move around? Hell, you aren’t even supposed to wear tight clothing when you’re pregnant; it’s ridiculously uncomfortable anyway. Shouldn’t we be allowed to let it all hang out when we’re growing a person inside of us? I mean, it’s hard enough to let go of the vanity (I truly did love my trim waist and my smooth, pretty stomach; all that has disappeared for now) after you give birth but to be “fashionable” by squishing down your baby bump? What is the world coming to?

And then we come to the all consuming topic of happiness. My goal in life has never been to “be” happy — but to understand happiness in relation to the truly tragic aspects of my life. Happiness isn’t a goal, it’s not something to be achieved for me, it’s something to be understood — it can’t be an item on a to do list, it takes hard work to understand yourself, to know what gives you pleasure, to avoid what gives you pain, and to realize that if you put “be happy” as a goal, you are automatically setting yourself up for failure. I was bombarded with “happiness” last week — Oprah had Goldie Hawn (wha?), a so-called expert, on her show, and it made me think a lot about the years I spent in therapy saying, “but I just want to be happy” without truly understanding that it’s as much a philosophical construct as it is a smile on your face. My goal in getting through these first few weeks of parenthood has never been happiness — my goal, as a good friend says, has been to keep my child alive, maybe, just maybe, have them thrive a little bit. The cult of Oprah’s a bit much these days — from the vegan challenge (been there, done that, um, last year) to the pale attempt to trivialize a very real, and very complex human condition (to Gretchen Rubin it, I’d say), and yet, I just can’t stop watching it.

Anyway, what is my point. I must have one. Yes. In my life I have always wanted to have children, whether they were mine or adopted, whether they were my nephews or nieces, I love having them in my life. And just when I had accepted the fact that we weren’t going to have any of our own for various reasons — the main one being the very real toll it could take on my health — I had actually, for the first time in my life, moved on. And then, surprise! We’re pregnant and 36 weeks later, we’re parents. And in between I spent three weeks in the hospital fighting for my life cursing the doctors that told me everything would be okay when, seriously, everything was simply not okay. Not okay.

But now, things seem to be coming back in line, and I can take a step back from “coping” with everything that happened to “enjoying” what’s going on now. I’m not going to say that articles like “When Baby Makes Three…” don’t completely trivialize how drastically and never-endingly parenthood changes your life; instead, I’m just going to giggle a little at their naivety. At my own naivety — I too once truly believed that being married and having a baby would equal “happiness.” That I cried and cried because those things, because of the disease (not the marriage part, natch), were denied to me like so much else in my life (was I ever REALLY going to be a modern dancer, probably not, so it’s okay that the disease destroyed my hip). When really, what it’s all about is finding a way to a different, newer, you — like my RRHB said, I’m never going to be the same “me” that I was 17 weeks ago when I went into the hospital, so why feel bad about it? Why worry about it? Why struggle with it? Why not let myself evolve along with the RRBB and see who comes out at the end — maybe she’s happy, maybe not, but one thing I do understand is that it’s not as easy as taking a quiz or writing some bland pap about how majestic your “mom” friends are (mine are awesome; don’t get me wrong). I am not a “yummy” mommy. I’ve got grey hair and loads of stretch marks. I have a “moon face” from the meds. But I can still make my RRBB smile like there’s no tomorrow — and there is bliss there, I don’t need Oprah to tell me that.

And seriously, we need real dialogue about what happens to us, to our bodies, to our marriages, to our lives, to our health. We don’t need a Hollywood fantasy or “perfect” moms or the pressure to do it all “right” or the heavy, heavy weight of “happiness” making it all harder to get through the day-to-day. Sometimes, all we need is an organic lollipop and a cup of tea, maybe a cookie — a couple of deep breaths, a good book and the time and space to write a few words. See, I’m starting to know this new me, she does look a little like the old me, just turned a couple of degrees to the south.

The World Is Constantly In Motion

The most surprising part of the last week or so is how magical the transformation is from “newborn” to “baby.” RRBB’s so much more active, especially when he’s sleeping — slurping and sucking on his hands, snorting, kicking off his covers, and somewhat trying to teach himself how to soothe himself, if not to sleep, then back to sleep, which I’ll take at the moment.

And like he’s constantly in motion, I, too, am in flux: up and down and up and down go the test results, which simply signals the need for more blood work, and more peeing into jugs. It’s so undignified. No one likes peeing in jugs, I swear, and the things that doctors need are never the things that the patients need. In fact, we’re more like babies than anything — we need comfort, hugs, calm words, patient hands. The other day in the doctor’s office, my SFDD took off my boots for me while I was on the examining table, just like a father would do to a five-year-old, and it was oddly comforting. And then, we saw my SFDD in the market the other day when we were grocery shopping. He’s such a very kind and gentle man — he stopped to talk to us quickly and cooed at the baby, commenting, like so many people do who know me better than they know my RRHB, that he looks the perfect picture of me.

So funny, people who know us both can’t stop talking about how he’s the spitting image of my RRHB, which is what I think; people who know me better all say the baby looks so much like me. In a sense, you see what you’re familiar with, making the baby different in the eyes of each that see him. I like that — different people seeing different things in my son (my son!) in terms of how they know me and his father, it’s nice.

The prednisone seems to be charging ahead with some obsessive/compulsive side effects these days. While I’m definitely sleeping more, thanks to an older baby and a very supportive RRHB, strange things are occupying my mind: a never-ending to do list that has items like “back closet books” and “file 2010 paperwork.” Longstanding, rolling items that are not remotely practical when you have a 15-week old baby. But the boxes and boxes of books in my house are no longer the sentimental mementos they once were — they are out of order, out of space, and lost in a time when words didn’t necessarily mean more to me, they just had more permanence.

I don’t need to keep every single book I read any longer. I am more mature as a reader — I know certain things about myself: I don’t reread; I like to get through a book every couple of days; I work in publishing and see A LOT of books; I can remember a lot even though I read quickly but passionately (slow reading, pffft); and I’d much rather pass along the book to someone else who might enjoy it than have to dust it for the next twenty years. That’s not to say I don’t keep certain books, I do, like On the Road and other books that I’d consider my favourites; lovely coffee table books, cookbooks, but we only have so much space, and it seems that all the words are weighing heavily on my mind these days. Maybe it’s because I have such limited time to string my own words together and maybe it’s because I have lost so many words too.

I find myself unable to finish so many thoughts. I’ll start to say something and drift right off. It’s impossible to do two things at once. I’ve been playing loads of Scrabble just to make sure my brain still works at a basic level. You take words for granted when you use them in a social situation every day. Sometimes, I even forget to talk to the baby, I just think he knows what I’m thinking by some magical baby-mother osmosis. And then I’ll snap out of it and start rhyming, making up silly songs, thinking that I’ve got a children’s book in me (doesn’t every mother think that? aren’t we all just so very wrong?): “I love you like the air loves the trees; I love you like the flowers love the bees; I love you…” you get the idea, right? More often than not, my RRHB has to say, “Use your words,” when I trail off yet again inexplicably in the middle of a thought, “can you pass me the, um, thing…”

We are going out this Friday night for the first time as couple since the baby was born WITHOUT the baby. My cousins are babysitting. I love the fact that our RRBB has a cousin who is about three weeks older than he is, my mind is full of all the fun the pair of them will have at the cottage, maybe not this summer because they’ll still be a bit too young to explore the forest or find salamanders in the swamps, but in the upcoming years, they’ll grow up as we did, and despite all of the truly tragic things that happened to me in my youth: my mother’s accident, my disease, all the family troubles, we, my two cousins, brother and I, had an idyllic childhood at the cottage. For now, they’ll have to be satisfied with knowing each other as baby friends, sleeping in the same crib and going to Stars and Strollers together.

Seeing, actively seeing and raising, the next generation forces you to come to terms with a lot of things that you maybe forgot. When I was out at my dad’s the other day going through all my old childrens books, I found Rupert. The first thing I did was open it up and smell it — the scent of the book as strong in its memories for me as the story. The idea that portions of my childhood have lasted so very long with me resonates in how I want to raise our boy. But it also resonates with me how little of his memories I’ll be able to control — what he remembers, how he remembers, what he holds with him into adulthood. I guess all we can hope is that we don’t screw him up too badly. And on that note, he’s fussing, and needs a cuddle.

Don’t we all?

The Magic Marker?

Our RRBB turned three months on Saturday, the magic marker, everyone told me, to when things would start to improve. There’s just one caveat, he was born a month early so I’m thinking he’ll start sleeping more, and the fussiness will calm down somewhere closer to 16 weeks or four months. I didn’t think we’d make it this far, let alone still be sane, but he’s been so terrific lately, and crying for only about a half-hour every day at different times in the day, that we all feel a bit calmer in the house. He’s also doing an awesome job with tummy time as represented in this hilarious photo.

And calm is what I need. My creatinine went back up, and so the SFDD is still back and forth about whether or not to change our treatment. I am so freaked out right now by the disease and by the fact that, while nothing has really changed (the levels are high but not AS high as they were), the disease still seems to be stubbornly trying to kill me. Yet, I feel so much better. That could be accounted by the fact that I’m getting much more sleep these days, though. It’s a silent killer, this Wegener’s Granulomatosis, and I wish that it would just go away.

It’s funny how being home turns your life upside down in a way. I have never figured myself to be a particularly active person — I like to sit around, watch TV, read, watch movies. But all of that comes from working full time and needing, I suppose, the down time. I never figured that a 50-odd hour work week, plus commute, was really all that much, it was just what you did. And now, I’m not saying that staying home with an infant is easy, far from it, it’s the hardest job I’ve ever had, but it’s also boring. The baby isn’t boring. He’s a fascinating little thing and watching him evolve is one hell of an interesting perspective, a blessing, I know. But your brain, your own brain, kind of goes on hold, and instead of filling up your day with work, with actual things that make a contribution to the world (in my case, it’s books, and I love my job), you fill up your day with errands. With all of the things that you had to cram into the weekend because by Monday morning at 730AM, it was up and go back into the routine again.

The RRBB sat in his bouncy chair for over an hour yesterday while I went through his clothes. Consistently amused by a toy giraffe, we read two books, and listened to music. Then, we danced, a little three-month celebration, I suppose. But that’s a lot of stimulation for one wee one and that was only one hour. What do you do with the other 23? He sleeps, I read. He eats, I read. He cries, I cuddle. My RRHB cleans the entire house, I manage to vacuum the upstairs and clean the bathroom sink. Because baby fusses, baby sleeps, baby eats, and I read.

Don’t get me wrong, I love reading, but I also need a day that’s not filled up specifically with errands. And most of them are made up because if we just don’t get out of the house, we start to lose our minds. It’s funny, compartmentalizing your life into little hour-long blocks (will he sleep longer than an hour this time?) is not conducive to a lot of activities. And the weather isn’t helping. We try to take him for a walk every day, despite the bitter cold, despite the fact that people don’t shovel, despite the fact that it’s mid-January in Toronto, Canada, simply because we are not the homebodies we claim to be. I will do anything to get out of the house these days, healthy or not, and I’m hoping that it’s good for the RRBB, because his parents are errand-crazy.

I’m bleary-eyed this morning, cramming blogging into today. I’m trying a new tactic and putting the RRBB right back into his crib the minute he falls asleep if we are home. The sleep book says that he’ll sleep better that way but I’m just trying to wean him from the human-couch aspect of our relationship. It doesn’t always work. We had a semi-rough night last night, the first in weeks, so one can’t really complain, and I’ve never seen a baby smile so much in my entire life. He’s truly a happy little guy, which means, I hope, we’re doing something right. Now if only that happiness could calm me down so I’m not always freaking out about my test results and what the doctors are going to say and whether or not I’ll have to change medications and whether or not my kidneys will survive and whether or not the preeclampsia will ever go away and whether or not the prednisone crazies will kick in and whether or not my blood pressure will stablize and whether or not I’ll be able to fill up another week with errands. And I feel like I’m wasting this time, which makes me resent the disease even more, it’s holding me back from all kinds of things. I can’t see the positives today, perhaps that’s what boredom does to you, in a way, it pulls you down in ways that you don’t want to go, makes you imagine the worst, refuses to give into the calm that you need to badly to get better.

So, errands, made up stuff that isn’t remotely necessary to your life, but gets you through the days, pushes you forward without actually accomplishing anything major. I suppose, if you had enough errands, and the ability to focus for longer than a half-hour because of sheer exhaustion, you could manage a to-do list or two. Maybe that’s the solution. Putting the errands on a master list just so I feel like I’m spending days living instead of dying (sic, The Shawshank Redemption).

Yesterday, I just had to dance with the RRBB to The Pogues’ song A Rainy Night in Soho. I’m not going to lie, I had his little hand in mind and we were waltzing around his room, singing these words in particular: “You’re the measure of my dreams, the measure of my dreams.” I cried, which is something I do a lot, and then remembered what my RRHB said when I told him about the test results bumping back up — that it’s not getting worse so why freak out just yet, everything is exactly the same, even if it’s not terrific, at least it’s not as bad as it could be, and the RRBB is certainly the measure of my dreams these errand-filled days.

I realize this photo is sideways, but that’s kind of how I’m feeling these days. Not upside down any longer, which is a good thing, but not wholly myself either. We’ve had an exciting couple of weeks — we’ve been getting out a whole lot, we’ve started to see the world from the squished up view of the Baby Bjorn, which is far, far easier in this weather than the stroller, we’ve gone skating two Sundays in a row, and out for dinner a whole bunch. We’ve still got a wee bit of the Witching Hour (last night he cried for a record ten minutes) but we’ve collapsed entirely into “Accidental Parenting” as The Baby Whisperer (suck it) would say.

Instead of doing our sleep training, which equals us going upstairs and having a bath at seven and then spending two-to-three hours trying to get the RRBB to sleep, we’re watching movies with him sleeping on us until he’s almost blacked out, and then depositing him in bed. The result? He sleeps for almost four hours at first, then three, then three, and I feel like a human being in the morning. Also, he doesn’t wail for the entire time we’re trying to get him down. My thoughts? He’s just not ready yet. And I’m okay with that. So far we’ve watched: The Fighter, True Grit, Black Swan and tonight’s The Social Network. Please don’t ask how we’re seeing these films. It’s not pretty.

It’s funny how much I hate taking pictures of myself when I’m in the throws of the disease. I don’t feel like myself and I don’t look like myself. The prednisone makes you puffy, it makes your skin all mottled, and bucket loads of your hair falls out. I don’t know if I’ve written this before but way back when I was first diagnosed with the disease, my family doctor said, “What a shame it had to happen to such a pretty girl.” As if forever setting up the dichotomy between a healthy, attractive me and an ugly, diseased me. The distinction exists so clearly in my mind that it’s hard sometimes to forget about it — you can avoid mirrors, you can put on some makeup, you can cut your hair (or, in my case, keep saying you’re going to cut your hair and never make an appointment because, well, that’s a long three hours to spend away from the RRBB), but you can’t avoid the side effects.

In a way, side effects are like so much in life, something you need to get through before life gets better, like the Witching Hour. But the manifestation of looking so terrible, the very real implications of the disease, well, those are harder to reconcile when you’ve been undergoing treatment for so long. And, truly, I haven’t even been recovering for that long — just 14 weeks, like I keep saying, I was the sickest I’ve ever been in my life, and it’s going to take longer than 3 months to get better. Getting better isn’t the point, either, staying better is, making sure that I am calm and collected, and truly healed, to get to healthy like I was before I got pregnant. One of the things that’s helping is getting out of the house. You start to go completely stir crazy even though it’s wonderful to have the RRBB, sometimes you just need to strap him into something and put one foot in front of the other. There’s an amazing rail path by our house that we’ve been walking lately. Lots of wild grasses, snow, and birds, plenty of people walking their dogs as well, and we can walk and talk, and walk and talk, it’s very therapeutic.

In addition to walking, I’ve signed up for Restorative Yoga once a week. It’s so expensive but so necessary. I feel so much better after I am done, and it’s just an hour, but I also experience how completely broken my body is too. My breathing especially — the disease has tuckered me out this time, and even though I can barely do anything, and feel like I’m starting from scratch with my practice, bawling each time I’m there, I know it’s doing me a world of good. I am consistently amazed at how much pure trauma the body holds separate from the mind, again with the dichotomies, and pulling them both together, like balancing what I’d like to look like with the necessity of the side effects, is an ongoing process. Sometimes you just need to give in to the moment, perhaps that’s my lesson for the week, you need to abandon what the books say and just do what instinctively feels right, what works, accidental or not.

Sometimes accidents, biology, sperm meeting egg on a snowy day in February in New York City, are just about the best things to happen in your life. We should remember that lesson always and not define yourself by the tragedy that sometimes accompanies the figurative car crash but what the end result might be — a brand new life that comes with its own way of expanding your heart in ways that you never thought possible. It’s not like I can’t teach myself to breath again, it’s not like I’m going to forget how, I just need a bit more practice. Luckily, I’ve got a year to figure it all out, moment by moment, and minute by minute, and as long as I can keep my fingers moving, everything will be okay. For the first time in a long time, I feel positive that I’m actually going to get better, that there’s a light at the end of the tunnel, but I don’t want to jinx it — for now, I’m just going to say that even if I don’t look like myself, there’s a tiny glimmer of feeling like myself, which, in my mind, might actually be better.

RRBB’s First Toque: O, Sweet Child Of Mine.

I am a woman who loves a toque. I wear them all the time, who cares if I look like Jay of Jay and Silent Bob, I love them. And, I am instilling this very real, very Canadian love on my child. This toque is a present from his Grantie Judy. And it’s awesome. Although I am afraid he’ll out grow it before too long and then I might have to frame it. Along with his umbilical cord stump and my pregnancy test. Is that weird to want to frame all that stuff and put it on my walls? I don’t think so, but someone might.

We aren’t sure if we are through the rough patch yet. Starting on Christmas, as I said, RRBB went through a period of intense fussiness at bedtime. It was almost too much to stand. A friend said, “Oh, yes, you think it’s done and then they break you.” And she was right. On New Year’s Eve, instead of starting at 830 or so, RRBB decided to start his fussing at 11 PM and go right until 4 AM. And we are now in week three or so of this phase. Everyone says that it’ll calm down around three months, but counting from his due date, that’s another five weeks or so. We can do it right? If people can climb Mount Everest, my RRHB and I can cope with a crying baby. The whole concept of The Witching Hour is fascinating — that his little brain/body is working so hard to grow at such a furious pace that it simply can’t contain itself — that it almost makes up for how rough the few evening hours are.

Luckily, he’s an utter delight during the day for the most part, and is a great napper. We take amazing walks along the rail path by our house, and he doesn’t mind at all being in the stroller (once he’s in and outside). We’ve even managed to go out for dinner twice, and tomorrow I think, if I am not so diseased, we might go to a Mommy and Me movie. Maybe. That might be pushing it. All in all, there’s little bits of life coming back into my life these days — I am clinging to them. He’s smiling a tonne, is awake and alert more, and is starting to really recognize us. But what I’ve been thinking all along is how different the idea of parenthood has always been for me, for someone who always imagined it was out of reach because of the disease and other factors, from the reality. The emotions are so much more intense in both directions. I never imagined I’d miss myself so much. Hell, I spent x-number of years hating myself intensely, why would I miss myself? But I do, and just those little bits of me coming back, along with some better test results from my blood work lately, I’m starting to see the light at the end of the tunnel.

So, we might be a bit behind in terms of birth date/due date, and it might take a few more weeks of losing our evenings entirely to a wailing child, but by the summer, hell, by the spring, I think we’ll be in a much better place. I’m even feeling confident they won’t switch the drugs over… but we’ll see about that because I’m still having disease symptoms three months into treatment. I wish I wasn’t puffy. I wish my hair wasn’t falling out. I wish I wasn’t eating terrible predisone-induced food. I wish the baby wasn’t fussy. I wish we weren’t so broke. But I don’t at all wish for anything to be different because I am content in a way that I never knew possible. Things are miserable with my health, worse than ever, but I made it through, and sometimes being tough is just the point. Maybe there’s nothing else to it — and that’s what almost three weeks of fussy baby is pointing us too as well. You can battle it all with a good sense of humour, an awesome RRHB, and some really, really good drugs. But being tough, being strong, being someone who survives, these are not poor qualities to have, are they?

The Calm Before The Storm.

Oh, the baby book warned us. We were told that six weeks beyond RRBB’s due date of November 19th he would hit his fussiest period yet, and they weren’t joking. Between his first shots, the fact that he just can’t seem to get to sleep at night despite being so tired his face looks like he just went twelve rounds with Ali, and then that whole holiday insanity, it’s been a hellish ten days. He’s sleeping right now but chances are I’ll have about fifteen spare minutes because he already looks like he’s waking up.

The adjustment to motherhood hasn’t been an easy one. I think even having a spare hour to myself would help at this stage but the baby’s not in a place to give that to me at the moment. Then, we need patience. But we’ve talked about that before. That’s not a new lesson. I am constantly thinking and rethinking my approach to everything. Consistently questioning and requestioning my decisions in terms of his care. It’s a guessing game most days and I’m waiting for the answers to present themselves.

There’s a lot of introspection that goes on when you spend so much time with a little person who can’t communicate back to you. And when you mix in the life-threatening disease stuff happening, I spend a lot of my interior life contemplating how I want to live, what I want this all to really look like, and then being utterly unable to put my thoughts into action. Not for lack of trying but for lack of energy — and I know recovery, especially from a flare as serious as the one that I had, will take some time — I keep expecting myself to be back to normal. It’s been twelve weeks now since I started coughing up that blood, and I had hoped that things would have turned around by now. But I need to keep my expectations in line with my actual health. Being sick is so hard for me to take — it sits at direct odds with my personality.

I also keep overestimating what I can get done in a day, both with the RRBB and with my health. I spend a lot of time worrying about things: about money, especially. We don’t have enough at the moment. That is a fact, UI barely covers our mortgage payment in a month. The downside of loving to manage money would have to be the insane spreadsheets and complex accounting that I tend to do during times of stress. I mean, truly, I have an awesome spreadsheet that keeps track of our spending, which is totally out of control at the moment. You see, the other downside to being home all the time? We really want to get the house into a finished, final, state. We bought some art — two beautiful paintings by Toronto artist Matt James — we bought a chalkboard for the kitchen, we put up the posters we got framed earlier in the year, and my RRHB finally hung up my garage sale finds in my office. The house looks great. And then Christmas came. So we are a little behind. So, late one night when the baby was feeding, I bought Gail’s latest book, Never Too Late, and read it on my iPad (#64), because I needed to feel like I had at least a little bit of control over what’s happening in my life right now. As you know, that generally only comes from reading. The book is mainly about saving for retirement, which I’ve been doing since I was in university (I used most of those savings to buy our house; and have continued to build our RRSPs up over the subsequent years), but there are some great management tips in there too. However, the main thing I realized was that using our Emergency Fund, which is quite healthy, over the next few months is exactly what it’s for — I am sick. I need help. Even though it would be better for my RRHB to work when and if he can, what’s better for our family is to have him home helping me, helping us, and just being with us. The most important thing in my life right now is getting better so I can be the kind of mother I imagine in my head, and to get back to being myself a little too.

Anyway, Gail has some great tips — putting away the dollars you save by using coupons in a vacation fund, or just using it for savings. Her whole point is that it isn’t hard to save, it just takes a change of mind. Oddly, that’s what all of these quasi columns are about for me, learning how to change my mind as my life changes. There’s a constant evolution that takes place on a day-to-day basis when it comes to the baby but also when it comes to us as people. The change might be dramatic at first: you stop working, you spend all your time at home, you almost die for the third or forth time in your life, you are taking bucketloads of medicine, and normalcy becomes relative. It’s as if it shifts like time does when you have an infant: there’s very little difference between night and day. That’s why I’m clinging to certain things, repeated again, reading, writing, thinking, and hoping. I know I am watching way too much Oprah but trying to be in every moment is actually quite entertaining. Last night, our little RRBB was throwing him umpteenth fit and we were just laughing with each other… trying to calm him down, obviously, cuddling him, rocking him, kissing him, but also laughing because he’s so damn cute when he gets that upset. If we can hang on to that manic happiness, I know everything will be okay. Love is a pretty magical thing, and I’m not just saying that because I’m feeling weepy and a little introspective because it’s the end of the year.

We have two more weeks until he’s three months, then another four after that until he hits his due date “three months” so we’ll see how things go until then. Everyone keeps telling us that it gets better but maybe it getting better isn’t the point. Experiencing it is. Looking at what we can learn from his point of view, however undeveloped that might be, and knowing that “unexplained fussiness” might just be the death of us, it’s just a stage like so many other parts of life. Our biggest success today? We left the house for a walk, and it was a gorgeous day.

He’s a little blurry but our RRBB has started smiling. It’s pretty terrific to see him open up like that and it makes us both a little giddy. It’s been a hard few days. The SFDD has decided for us to stay the course — I am taking more meds, but they are the same meds, so we can keep breast feeding for now. As I’m still having disease symptoms, they are slight, but they are there, and that means that chances are we’ll be taking the “big guns” meds in January to try, yet again, to calm the storm. The disease is a light rain at the moment; they want to completely clear up the clouds, bring on the sunshine, but because the weather system inside my body remains so severe, it’s touch and go until the drugs start to work.

What all of this means for me — being stable but on the edge — is more blood work, heading to the hospital every 10 days, more doctors appointments and lots of careful monitoring. But, we get to breast feed. I think the sacrifice is worth it. I’d rather give him three months than two, but I also don’t want to be on dialysis in six months either. The thought terrifies me. And my lesson for this week?

Irony.

Funnily enough, the first thing that happens when you become a parent, regardless of how old you are, how far along in your life, people come forward with advice. This doesn’t bother me in the slightest, I am a big giver of advice, so you can’t be obnoxious about receiving it (and I can’t remember if I’ve talked about this before), and the #1 thing that everyone tells you: rest, rest, rest. It works both with the Sickness and with the Newborn. Yet, the prednisone makes you so wired — it’s kind of like being on speed (not that I’ve done speed; I’m extrapolating) — that it’s impossible to rest. The drug keeps you awake all the time. The RRBB keeps you awake the rest of the time. This means that I am wiggy with lack of rest, my body under siege and no release on the horizon. Some days I kind of feel like that boat in that George Clooney movie (I know, it’s not very good, The Perfect Storm). Right now, I’m Marky Mark floating on the horizon. In my case, I know I’ll be rescued. I’m not going to drown but getting through the irony of having to rest but being physically unable to do so because of the very drugs that are meant to keep me alive, well, it’s an interesting conundrum.

I’ve signed up for Restorative Yoga in January. I’m going to do private lessons. They will be expensive, and I know Gail Vaz-Oxlade wouldn’t approve, but I need to heal and it’s one way that I know works for me. I’m also keeping the crazies at bay by making lists and trying to cross things off one-by-one. It’s a recurring theme for me — trying to get a handle on the psychological side effects of the disease by doing small things that I actually do control — and it’s the first thing that gets out of hand when the psychosis hits. Thankfully, and I don’t know quite why, but I am thankfully free of this side effect this time around. That’s not to say that I don’t break down every few days, bawling, and I know it’s because I’m just so bloody tired but, on the whole, I am not wanting to drive my car into oncoming traffic (that’s what happened the first time I became sick) or jump off the top of a tall building (which happened the next time I took this much prednisone).

Laying it all out, the rareness of the disease means that I am a bit of a science experiment for my doctors. It’s always worked well for me in the past, and patience to truly wait for everything to calm down is needed. I’m finding that in books right now. I’m finding that in little moments here and there, writing here. Truly, as long as I keep putting the words down, taking them from my brain and putting them out there, I can keep a little bit of myself back from the disease. It doesn’t get to own all of me. Even if it feels that way a lot of the time.

Here is baby’s first outing to the rink. Yes, the hockey rink. We watched our nephew participate in some faux-Olympics to celebrate the end of his skating lessons and it was just about the cutest thing ever. So much to look forward to, right? RRBB slept through the entire thing, like he does with so much of his life. The odd irony (is it ironic?) of early parenting, how much the baby sleeps vs how little the parents do, his life is so restful when he’s not screaming.

The strange obsessive need to clean up and out continues. I know it’s a product of the prednisone crazies, and I know it’s from being inside the house so much, I just can’t stop thinking about how much more I can tidy up and move around. Of course, most of it is just heading into the basement, but that’s the last stop before it’s out of the house forever. I can barely believe that Christmas is just about ten days away, and that next Friday is Christmas Eve. I know where the time has gone, and seeing the beautiful snow today made me realize that it is really winter in Toronto. One thing I am grateful for right now: not having to commute everyday downtown. One thing I am not grateful for: it’s not as easy to get out of the house with the baby for a walk. And fresh air is so important to just being able to keep going.

Tomorrow is a day of reckoning. I went in for some blood work this morning, and I hope it is better tomorrow. I hope with every fibre of my being that I can stay on my current drug regimen, which means we can keep breastfeeding. There’s little choice with my life, literally, on the line, I’ve been thinking positively, maybe even fooling myself, but trying not to freak out completely at how the disease just refuses to go back into remission.

We’ve had a couple of peaceful days at home. So, I’ve spent a lot of time just feeding and sleeping with the baby. I’ve been enacting, purposefully, a measure of calmness, not watching television during the day (and not missing it at all — if you knew me, this would shock you), reading, writing, making lists, obsessively clearing out stuff, it’s all just a rouse to keep my head on straight as I battle the terrifying Wegener’s for the umpteenth time. It’s an interesting dynamic: raising a new life while trying to hold on to my own. There’s so much potential with the RRBB and I feel mine evaporating with every pill I need to keep my alive. I feel dramatic, maybe melodramatic, but I can’t just think of myself and the disease anymore. I have to think of my family and how it affects all of us — husband, son. I often get carried away in just trying to get through the day-to-day with the disease, the exhaustion, the symptoms, the terrifying test results, that I forget that my RRHB has to deal with the disease as much as I do, but in a very different way — he has to be supportive, kind, understanding, even when he’s going through stuff of his own. That would be hard for any lesser person. I am lucky to have someone who gives so much and takes such good care of me, there would be no me without him.

Generally, I meet the disease, and its flares, with a great depression. With anger, rage and a healthy dose of denial, and the disease keeps coming back. I put myself through incredible amounts of stress, which I’m convinced has a lot to do with the Wegener’s doing what it does. But in this case, it wasn’t my life necessarily, it wasn’t my job, it wasn’t a horrible tragedy, it was something I was really looking forward to — having a baby, and so I can’t be angry, it won’t do either of us any good. I can be sad, and cry, it’s healthy, but the anger doesn’t do anyone any good. Neither does the resignation. I remember being in my mid-20s, almost flunking out of grad school, looking up horrible pictures of collapsed sinuses, and deciding that if the disease wanted to have me, it could take me. I no longer feel that way. But I do just want it all to stop now. I’m tired and need a rest.