my tragic right hip

Busting out bad joints all over the place

May 30th, 2011

Notes From A House Frau XXII

What A Difference A Few Weeks Make

This picture cracks me up. The RRBB definitely enjoys his food — on this day he had green beans, some chicken and vegetables, and some barley cereal. There might have been dessert. I can’t remember. All I know is that by the end of it he had food from one end of his face to the other, which to me is an important part of discovering what he likes and doesn’t like, of discovering the joy of eating. The RRHB does it a little differently, he cleans up the baby as he goes along, consistently wiping his face so that he doesn’t spread food from one end of himself to the other.

It’s interesting, as the RRBB turned 7 months last weekend, I can completely see him start to develop more and more independence. I know, ironic, to talk about independence in terms of a wee baby who can’t walk, talk or even feed himself. But, more and more, the RRBB likes to do things independent of me — he’s almost completely weaned, and while I still feed him, technically, the food isn’t coming from inside of me any longer, and that takes some getting used to. He still yearns for it, and so we’ve kept one or two feedings until the doctors absolutely tell me I need to stop, yet he’s trying and loving so much “real” food that I’m encouraged by all of his likes (and very few, read: none, dislikes). Also, he’s sitting up on his own for the most part, falling over occasionally, bumping his head, bawling, and then breaking my heart. Yet, we are so very, very lucky, as I keep saying to all of my relatives, for he’s truly a happy, healthy, gregarious, charming little boy. I adore him.

Independence is an interesting concept — I am certain the RRBB doesn’t understand it psychologically, or maybe he does and I am way off the marker but, instinctively, he’s trying harder and harder to separate himself from us, his parents. He complains now if he lies down in the bath, before he would sit placidly, splashing a little, now the water ends up halfway out of the tub before we’re even finished. He loves Not a Box, but not so much Goodnight, Moon. If he isn’t eating fast enough, he complains; but then, if it’s too fast, he gets equally upset. He makes a little strange when he wakes up from a nap. Yet, if you get him at the right time, he’ll charm the pants off of you. This is the real gift of parenthood, not just the unmitigated, unceasing love that renders your heart incapable of understanding how this person was not a part of your life just months ago, but seeing first-hand the evolution of a personality. Objectively, it’s not something one remembers, it’s not as if you can reach back into your own mind and think, “wow, what was I like at 7 months?” Yet, every day that I spend with the baby, I am seeing how fascinating it is to watch him grow — and my heart breaks just a little each time he grows more independent, but it also means I’ve got a bit more freedom. Evenings, nap time (few and far between these days; teething), stroller time, visits with grandparents and granties and gruncles, and it’s all a wonder to me. I can’t stop marveling at him. I can’t but wonder what other surprises are around the corner.

He’s the only baby I will ever have. Even typing that sentence makes me sad. I never imagined I would love the baby stage as much as I have. I mean, I have always loved babies, but in the sense that I’d hold them for a while and hand them back. Cute, snuggly little things that smelled delicious and whose exhausted parents I’d barely notice. Parenting wasn’t a reality to me — the utter loss of self wasn’t a devastating reality, the sheer tenacity of his will to break us completely in those first few months has almost been utterly forgotten. Now, I can sit and read while he plays beside me, holding one hand to steady him, the other in a book. That, I can do. He goes to sleep so early that my mind can drift (when I’m not so exhausted I can barely see) to a place where I can spend some time working on non-blog writing. In short, I feel lighter than I have in months.

That’s not to say that the disease has let me go just yet. I see the SFDD this week and we go from there. They are almost convinced they need to switch the drugs. All I know is that I need to get off the prednisone. There’s a pain in my left hip. It’s familiar. And tragic. And I can take a lot, a lot of punishment from the gods or the universe or whatever karmic relativity has decided that what my world means is Wegener’s and all the ensuing tragedy, but if I lose my other hip, well, I am not sure I’ll recover. I need to move. Without movement, without walking, biking, swimming, I will surely curl up into a ball and disappear.

May 8th, 2011

Notes From A House Frau XXI

Nostalgia: Pictures For My Kid

Last night, my RRHB and I went to see The Lowest of the Low play Massey Hall. For a long time, he and that band’s lead singer have been good friends. It’s a pretty amazing thing to see someone you’ve known for twenty years (they were celebrating the 20th anniversary of Shakespeare My Butt) up on stage at one of Toronto’s most prestigious venues. It’s also really cool to see Massey Hall packed with people who have adored that record as a life anthem for as long as its been pressed jumping up and down in their seats, singing along, knowing all the words, and clamoring after the band post-show for autographs etc. It was a delightful evening.

But, as with everything these days, the whole evening just got me thinking about where the heck twenty years disappeared to. The disease had just been diagnosed, and I was out for one of the first times since getting out of the hospital. The same side effects (puffy face, hair loss, pimples, weight gain) on a much younger, non-postpartum body seem almost glorious in retrospect. I was wearing a cute, flowered dress, this I remember. We were upstairs at Sneaky Dees and my RRHB’s first band, Dig Circus, opened up for The Lowest of the Low. The RRHB sang me the dirty bits of “Rosy and Grey.” I danced a lot. We weren’t together but it seems almost prophetic to think back now as to how we were probably always destined to be together anyway. He’s still the very best person I know. He was back then. Brought me a hilarious Pepsi hat when I was in the hospital and hugged me like I was no different. He still holds me like that today. I treasure that, it’s something to cling to during all of this, and how hard it’s been for so long.

Annnywaay, I got stinking drunk. And managed to get stinking drunk for many, many Low shows in the coming years. There was one point when we (my dearest Hannah) saw them play in Kingston, and then drove all the way to Banff where we were working for the summer, only to see them there as well. Knowing the band, because so many of my friends from high school were in Dig Circus, was a highlight of my young life — it felt so cool to go to the club and talk to the band. I had grown up with obsessive love for so many bands, a lot of it I outgrew (goodness, I listened to so much U2 in high school and then never again), but it also set the tone for so much of my life. I love live music, prefer it in dingy clubs before the bands are big enough to hit Massey Hall where you can get right up close to the front of the stage and go deaf listening to the up and down and back and forth of it all. And I’ve seen so many life-changing rock shows with my RRHB and they always make me nostalgic. Not like the nostalgia of last night, of a misspent youth, of the hundreds of hours I’ve spent drinking beer and jumping up and down, of thinking about all of the things that have passed since the very first time I’d seen the Low until now, but of how rich my life is because music, good music, has always been in it.

Before the show, the RRBB and I danced around the kitchen to “Come on Eileen”, a favourite song that just happened to be on the radio. A few weeks ago we went to see The Pixies (also at Massey Hall; they played another anthem album, Doolittle), and a couple weeks before that we went to see the Elephant 6 Collective (although another throw-back to the 90s, I had only started listening to these bands in the last couple years). I’m lucky to know some of the musicians whose words and sounds have made such an impact on my life. I feel words deeply. They are more than letters strung together. They are always pregnant with meaning and precious with pause — they keep me whole and make me who I am. Without them, without being constantly amazed by how other people use them, I would be lost. Without my own words, I would have drifted off into the abyss of the disease, of the general overwhelming tragedy of my life, years and years ago. And then to know the incredible human beings behind the words, the melody, the tunes that are as familiar to me as the smell of the city after a delicious rainfall, well, I’m lucky.

In a way, I want our RRBB to know his parents outside of this role we have fallen into simply because of his creation. When we first announced his impending arrival, thus dubbed “fig” for the duration of his incubation, our families and friends were really excited for us. The baby became the centre of our universe. It’s all anyone talked about, and now that he’s here, he’s the star of the show, and rightfully so. He’s a gregarious, delicious little creature who brings the joy like nothing I’ve ever had in my life. But we were people before him. In fact, I think we were pretty interesting people. And for him to appreciate how rich he has made our lives, he needs to know how rich our lives were before he was a fig in my belly. Our lives aren’t captured on film, so he’ll rely on photos and stories and seeing the people we’ve known for more than 20 years at birthdays and occasions and dinners and we’ll become the “parents” — it’s generational, and it’s not something that can be changed. I don’t want to be his friend. I am his mother. This is a role I take very seriously, but I do want him to know us as friends in relation to the people we know, to the goodness we’ve put out into the world, to the weight we attach to words in both of our lives. We can play him the songs. Perhaps he’ll fall in love with them too. Perhaps he won’t. Maybe he’ll hate music and want only to play hockey. Maybe he’ll really not like books (argh!) and love video games. Who knows. For now, I’m satisfied to let him in a little bit at time — to dance around the kitchen yelling “Torra loora rye aye” and hoping he feels the joy I feel when I hear that song.

It’s Mother’s Day. We are not celebratory people, in a sense, no, that doesn’t describe it. Celebrating life on specific, somewhat made up holidays (Valentine’s Day, etc) has never really been my/our thing. I mean, I know I’ve told this story before, but neither of us can ever remember our wedding day — RRHB because he wasn’t convinced about getting married in the first place and me because I was always convinced I just wanted to be married and couldn’t give a whip about a wedding. People look at me strange when I say I honestly have no idea when my anniversary is, but I’m more interested in being with my RRHB on a daily basis, on celebrating my marriage in my own way, than I am about making a big deal about anniversaries, holidays, etc. We love our families. We love our family. We love each other. We love him. I’ve survived another day with the disease and, in ways, I think nostalgia truly takes up enough space in my life in so many good ways that I don’t need to save it all up for one day. When my RRHB kept asking me what I wanted to do for Mother’s Day, I didn’t have an answer. And then, I’m glad I didn’t. Because today was perfect and perfectly us. We got up, had pancakes, took the baby for a wonderful walk by the lake, and spent an afternoon talking nostalgia about the last twenty years. And, for the first time in a long, long time, my eyes are wet and dripping with tears that feel like little blessings and not the unbearable weight of the disease.

April 28th, 2011

Notes From A House Frau XX

I Am Drowning in Empathy

At this very moment, my RRHB is serenading the RRBB with very sweet guitar sounds, singing softly to him, and I am finding it a struggle not to bawl. I am not going to lie. Things are hard right now. It’s been a long six months of fighting the disease with very little good news. As a result of my blood work being so wonky, I’m back on a higher dose of prednisone and it’s actually taking its toll this time around. I am defeated and down. I am hoping every moment of every day that it isn’t reflected in my parenting. That the baby can’t take one look at his puffy, grey-haired mother and think: “Why did I end up with her?”

He’s six months old now, and we officially have to start weaning him. I need to start taking not one but probably two different medications for the disease, and neither are compatible with nursing. I am so hesitant to let it go, not because I think it’s so good for him, or because we’ve created an accidental parenting nightmare with him only nursing to sleep for the most part but, rather, because it’s truly the one thing that’s gone so very right amongst all of the wrong the last few months. He’s a champion nurser — has gained a great deal of weight, and is rarely waking up more than once a night now that we’ve got a semi-decent bedtime routine going. I’m clinging to breastfeeding in the sense that it’s a symbol of normalcy in terms of my life at the moment. I feel like a regular everyday mom, and not one whose exhaustion comes from a battle going on within her own body rather than the comforting tiredness of raising an infant.

I can’t seem to hold back the blues any longer. I’ve tried. I’m doing it all right: I’m getting out, getting exercise, seeing friends, have a great support system, but when my creatinine hit 180 and I knew the disease was back to its nasty, aggressive self, I felt palpable fear. A panic in the middle of my chest. An ache in my belly. A tell-tale sign that if you don’t fight psychologically as well as physically, the disease can beat you on all accounts. But thinking positively has never been a strong suit of mine. It’s funny — I like to think of myself as relatively upbeat person. Glass half-full. Glass half-fun. Lots of jokes. Laughing a lot. Enjoying life however it comes to me, but then, pour the prednisone into my system and I become entrenched in the cocoon of depressive thinking, everything’s going wrong, I suck at it all, I look terrible, I feel even worse, and it’s a vicious cycle that seems as hard to get off as a British roundabout.

And I cry. And cry. And cry. Not in front of the baby. And not about anything in general. I just feel so bad about so many different things — silly TV movies, an episode of Law and Order, a book, a newspaper article, the state of the environment, the election — the list goes on. I’m drowning in empathy. Goodness, my mother, who lived for over twenty years in a chronic care hospital, had a horrible existence. And I can’t stop thinking about her lately, feeling such epic pain on her behalf, and I know it’s not rational, she has thankfully passed away now, that it kept me up for hours the other night. Like Leonard Cohen sings, “I ache in places now where I used to play.” I know he means it slightly differently than I would interpret, more bodily, but my mind is aching in ways I haven’t had to deal with in decades. And I can keep it together. I am keeping it together. But I’m missing out on my own life in a way too. That’s what disease does to you — robs you of your potential. I’ve always thought that I’ve put up a really good fight of taking that potential back, of climbing out in ways that I can feel proud of: advanced degrees, writing, a career that I enjoy, a family, but for right now I’d settle for progress in a medical sense. For better test results, for my body to respond to the treatment, for someone to find a magical solution that rips the Wegener’s from my body once and for all.

Funnily, the baby and I are struggling together. He’s trying so desperately to move. He rolls and rolls and rolls and rolls but can’t get any further, and then he fusses because it’s frustrating not to be able to go where you want to go. I roll him back and pat his belly, tickle him a little, sing a little song, and he grins — it’s so delicious it could be a vegan cupcake — and then we start the whole ritual over again. But I know while he can be the “measure of my dreams” (so say the Pogues), he can’t be the solution to what’s going on in my brain. He doesn’t need that kind of pressure — I have to pull myself up from the malaise myself. Burdening your children with your happiness — what could be worse, I think, in terms of screwing them up for life.

Yet, there’s so much joy in the everyday. We took the picture above yesterday when all three of us sat outside on our back porch and just watched the rainstorm. Pounding down all around us, we three happy and dry, the rain was another new experience for him, and for us too, in a way, looking at it from his point of view, wanting him to know weather, life, the outdoors, our backyard, all the potential of his life. Maybe that’s the point, to remind myself that I still have potential, that the disease can’t take it all, I don’t have to let it win. But today, it’s winning. Today, I’m crying a little bit too much. I don’t want to leave the house. I want to eat Doritos, nachos and all kinds of other bad food. Thankfully, the Nephews are coming over for an hour and that should distract all of us from the maudlin feeling-sorry-for-myself kind of day I’m having.

April 19th, 2011

Notes From A House Frau IXX

All The Boys In The House

We baby sat my two nephews the other weekend — two six-month-old babies (see left) and one five-year-old. And it was chaos. My RRHB had The Nephew outside to do some yard work while I took care of the two wee babes. For a while, it was Keystone Cops: put one baby down, the other would cry; pick him up, then the first baby would cry. Wash. Rinse. Repeat for about 25 minutes. Then I got wise to their mojo and just walked around the house with a baby in each arm. Every now and again the cousins would reach over and hold one another’s hands. Babble a little bit. There was a point they were both in the crib and I heard SBC (Sweet Baby Cousin) screaming — RRBB had turned himself right around and was hoofing him in the head. Hilarious. Then it came time to put them all down: RRBB down first, nurse him while reading The Nephew some stories. RRHB rocking SBC as I put The Nephew to bed. I take SBC and continue to rock him to sleep. The whole production took hours. Seriously, how do people do it? It’s an art form, that’s for sure. But it was also completely fun.

The lessons I learned? Even though it was hard to have more than one baby at one time, and that my body can not remotely sustain another pregnancy, but if I was 10 years younger and 100 times healthier, I’d think I’d have bucketloads more kids. It’s just so fun. And that’s not to say that my RRHB and didn’t have a rich and fulfilling life before RRBB. We did. We travelled and made music and wrote unpublished novels and have wonderful friends and lovely families and loads of nieces and nephews and were considering moving to the UK (just because neither of us have lived anywhere else). But I’d always wanted to have children, and I am so glad that we did — I’m exhausted, still dealing with a disease that doesn’t seem to be quieting down, bored most days with being at home, but feeling enriched emotionally in ways that I find hard to describe. There’s an element of patience and kindness in my life that was absent before. I had a terrible temper growing up, and well into adulthood. Apartments with holes in the walls where I kicked them once I realized I’d lost my Metropass or was late because I couldn’t find my keys — all kinds of trivial things that didn’t remotely deserve the emotional response I gave them.

It’s so interesting. Humans have emotions to burn. Piles of pent up anger, rage, discomfort, and some of it’s absolutely debilitating. When you add tragedy to the mix, things intensify. There’s no where for the energy to go — and if you don’t find active, positive ways to disperse it, I think that’s when your brain just goes into overdrive. At least, that’s the way it is for me. When I was younger, I held it all in, the pain of losing my mother, the frustration of constantly dealing with a life-threatening disease, a string of ridiculously bad, terrifically awful relationships — constantly putting pressure on my brittle heart to take more and more. Gaining perspective isn’t easy. For me it took one major prednisone-induced breakdown in my 20s. I’m not sure how much I’ve talked about it — I couldn’t leave the house, was cleaning with bleach at 3 AM, never ate, and was listening to voices in my head telling me to jump off of buildings. Oh, and did I mention I was trying to finish my MA? It was the most difficult emotional time of my life — I didn’t have any coping mechanisms. And once the psychosis hit its peak (the voices), that’s when my kidney doctor at the time sent me to a shrink. I credit him with saving my mind and the “prednisone crazies” as I like to call them have never been so bad since. I have tools now of dealing with them — of knowing what it is and the right way to approach the overwhelming emotions.

I needed coping skills this week. My creatinine spiked to 180 (keep in mind normal is 70, and my “normal” is in the 120s) — the higher that number the less your kidney is functioning. And I was having all kinds of other advanced disease symptoms, terrible joint pain, awful ringing in my ears and ridiculously painful sinuses. I KNEW that because we had dropped the prednisone that it wasn’t simply strong enough to contain the Wegener’s. I cried, a lot. With the exception of when they diagnosed the disease, I’ve never had test results that high, and I’m living with the palpable fear that they’re not going to be able to control the disease. That my kidneys will go and that’ll be that — positive thinking aside, patience aside, I needed an outlet for all the excess emotions raging through my system. The calmer I am, the better it is — and thankfully, we got tickets to see The Pixies at Massey Hall (awesome seats, row L!). That one show, they played B sides and Doolittle only, reminded me not only of who I am but where I came from — we’ve listened to that record relentlessly. It’s one where I know all the words and all the songs and can place myself in different parts of my life through the music.

These days, because it’s such a fun stage — the six-month marker, I’ve been craving the baby. Not like I crave Cadbury’s Easter Eggs but more like something pulling at my heart. I don’t want to trivialize the relationship or state the obvious, write in cliches (every mother loves their child to abandon blah de freaking blah), but when he’s sleeping I wish he was awake. When he’s awake, I know he should be sleeping more. On days like today, he’s perfectly angelic. Not fussy, eats just about everything in front of him (with the exception of some fruits that he’s not crazy about just yet), smiles, sleeps, and cuddles with an intensity that I find hard to replicate. Days like yesterday, well, he’s teething, so grumpy and couldn’t stand not being held, which makes the hours slow and the time creep. I wouldn’t trade it for the world — either RRBB. I know I’m struggling. I know I’m not getting enough rest. I know I need to stop nursing. I know that the disease is winning these days but I find the joy in the everyday so much more than I ever used to.

We went for a beautiful long walk today along the railpath. There were tonnes of birds: mockingbirds, juncos, red-winged blackbirds, and a giant Canada goose. My friend Kath came with us, and she was walking her gorgeous dog, Mannix. The air’s cool but fresh. The city is quiet because it’s a holiday. And even though I want so much, for it to be warm, for me to lose the baby weight, to not feel the pressure of the disease, I also want to be patient with myself. We aren’t having any more kids. I need to not race through this like everything else I do in life, just to get to the end, and then move on to the next thing. Yet, I’m loving every part of his growing up — I mean, right now the RRHB’s playing the piano and the baby seems to be singing along. It’s so cute it makes you want to eat his toes. He’s kind of screaming like Frank Black at the moment: whaaaaa! Aaaaaa! eeeigh!!!

So my life is made up of moments lately. Some good. Some bad. But all connected by this gift of time that I have before me. Six more months and then it’s back to work. Then the baby is no longer a baby but a toddler and if one more person tells me how fast it’s going to go, I might just start weeping in front of them. I don’t want it to go fast. I want it to be the slow food movement of maternity leave. I want it to be all savoury and with rich spices and lots of new and exciting dishes. And when we need it, a frozen pizza or two.

April 5th, 2011

Notes From A House Frau XVIII

At this very moment, my RRBB, after an exhausting few minutes of rolling over, fussing because he can’t get himself back again (like a turtle on its back only in reverse; it’s quite funny), has spent the last fifteen or so minutes looking at himself in the mirror on his activity mat. His concentration skills are hilarious. I’m not sure at all what he sees in the mirror but he’s absolutely enamoured with whatever it is…

Here is our wee boy at five months (five months!) [And this picture is already three weeks old because he’s 26 weeks tomorrow]. He’s starting to have quite the little personality. My temper, my RRHB’s response to anything traumatic (to go to sleep), and a lovely happy smile that belongs to him alone. Everyone keeps telling us that this is the best of the baby stage — when they get to this age, five or six months, but I’m enjoying every baby stage these days, if only because it’s all so new to me, and just so damn fun. That’s not to say that I’m not exhausted, because I am, beyond words, and that I’m not frustrated by how the disease still refuses to calm down, because I am, but I’m trying to be calm and collected, find a quiet routine we can settle into, and make the most of the time that I have before heading up to the cottage for the summer (without plumbing!).

We gave the RRBB some sweet potatoes this afternoon. His very first non-cereal food. He decided about four bites in that enough was enough and he’d really just prefer to breast feed. It’s a slow, patient process, this real-food business. Like anything, I am excited for him and want to record every little thing that happens — but I can’t be sure that when he’s older, he’ll actually want to know.

Over the last few days, I’ve seen many doctors: SFDD, kidney doctor, gastro doc, and had some blood work done today. I’m not going to lie — I’ve been panicking inside a whole lot about the state of my poor kidneys. I have tried to be positive, tried to look at the bright side of it all (that my condition is essentially unchanged since two weeks before having the baby), and yet regardless of all the drugs, of all the “resting,” of all the not working, my creatinine is still sky high as is my blood pressure. In all the years I’ve had the disease, I’ve never had high blood pressure — and I hate taking medicine for things that my body should just do right — and it scares me when I put the cuff on and get a reading like 146/98. We can’t afford any more restorative yoga at the moment, and the money I thought would last us a year barely made it through six months. Such is life, right?

Last time, I promised I would stop complaining about being sick. Or tired. Sick and tired. A lot of residual shock and awe about how everything turned out led me to try and read other birth stories. Helen left a comment letting me know about a collection called Great Expectations: Twenty-Four True Stories About Childbirth edited by Lisa Moore and Dede Crane (#31). And it’s excellent (thank you Toronto Public Library for loaning me a copy). I whipped through it in just a couple of hours (over a few days) and came to the conclusion that not a single birth plan goes according to, well, plan. For something that women have been doing since women were, well, invented, childbirth is as complex and ever-changing as people are themselves. I needed to read this — I needed to know that despite all the best laid plans (birthing tubs, doulas, midwifes, home births, drugs, no drugs) that a women might set out before her due date, chances are something dramatic will change in the minutes when she shouts “it’s time” at her husband and/or significant other. It’s a bright, fascinating collection — not a single one of the writers fall back into cliche to describe their experiences, which I felt was a revelation considering most pop culture birth stories coming to us via television and the movies aren’t remotely realistic. Like firefighters heading into a blaze without their masks, they’re all panting and fake screaming, with babies popping out looking six months old already. But this collection is painstakingly honest, achingly real and just what I needed to read.

Anyway, I don’t have much else to say. I’ve been trying to write this blog post for over a week now and the RRBB hasn’t let me get much done. I’ve got two book reviews to get to and a to-do list that is as long as my arm. So, I will stop rambling, for now.

March 25th, 2011

Notes From A House Frau XVII

It’s been a hard week. I had a very disappointing visit with the SFDD last Wednesday morning. My creatinine levels have spiked again for no discernible reason. So, I can’t taper the prednisone any further, and I’m back to bi-weekly blood tests, which is tiresome and exhausting, to say the least. And I know I shouldn’t complain, that there are far sicker people in the world, people in far worse conditions than I am, but I had trouble seeing beyond my own frustration with fighting an unchanging disease for the last six months. You start to feel as though you are losing the battle that might cost you the war or, in my case, an organ. We are not remotely there yet but I’ve never been so scared that the disease won’t get better, wholly better, than I am these days.

I’ve cried a lot. I’ve felt guilty for thinking terrible thoughts — was this the right decision to move forward, why didn’t I speak up when I was feeling so poorly, could I have prevented the episode from becoming so dramatic. Probably not. There was no way to tell and we ended up coming out of it alive and with a beautiful baby that we adore so much it hurts. But that doesn’t stop me from being so utterly and completely sick of being sick these days. When the SFDD told me my creatinine had gone way back up, it was everything I could do not to burst into tears in his office. He’s calm. I’m a wreck. My stomach is in knots and there’s nothing I can do to fight the despair.

My RRHB keeps telling me that things are no different than they were when they let me out of the hospital all those months ago. And he’s right. I’m not getting worse. The disease is stable or else they wouldn’t let me go home and “stay the course” (SFDD’s words; not mine). And taking 15 mgs of prednisone is way better than taking 60 mgs of prednisone. And so, we continue. And continue. Six more weeks until I see him again, six more weeks of being able to breast feed, six more weeks before they talk again about another drug regiment, and six more weeks of trying to think positively, of smiling, of playing, of giggling, of trying to relax and not worry so much about it all.

Way back in the way back, when I was first diagnosed with the disease, I was still a teenager. I had that invincible feeling about it all, there’s no way I’d let the disease kill me — it simply wasn’t an option. You just don’t realize the severity of it all at that point. I went to university, to grad school, started working, got married, and have had a baby — all things that weren’t necessarily possible the very moment I was diagnosed. That’s the trouble with the flares, with the unstable test results, they refuse to be a part of the big picture. They trap you in the downward spiral of letting the disease win — as if mind over matter actually makes a difference. All these years later, I’m far more temperate in terms of how I think about it all. I know stress and worry makes it worse. I know that being healthy is ever-so important. I know that I am lucky to live in a country where I have access to medical care that has consistently and, almost effortlessly, saved my life on more than one occasion. Still, I’m angry.

So, I’m trying not to let it show. I’m going to bury it for a little while. I’m going to sob, if I have to, and then laugh uncontrollably at some stupid thing that my RRHB says. I’m going to feel sorry for myself and then berate myself for doing so. Then, I might take a walk. I’ll string some words together and then take a deep breath. It’s funny, we all use war metaphors when “fighting” diseases — and I can’t help but hear echoes of Shakespeare’s Henry V, the Kenneth Branagh film, which I haven’t seen in years, but that great St. Crispin’s Day speech, a sword thrust in the air. Maybe that’s what I need: a great big sword to thrust in the air.

March 21st, 2011

Notes From A House Frau XVI

RRBB has been hitting some very fun milestones lately. He had his first taste of solid food (if you can call it that) as the picture here depicts. He slept through the night: twice (even though in the few hours preceding the long sleep he was over-tired and ridiculously manic, but not upset). He visited a sugar bush and an antique mall (or, rather, his bored parents dragged him to said sugar bush and said antique mall). And he was babysat for the second time while my RRHB and I went to see the Elephant 6 collective at Lee’s Palace on Friday night. Shockingly, he’s still the happy, well adjusted, easy baby we’ve brought into this world.

Of course, I’m still not sleeping from the drugs. But the odd night isn’t so bad here and there, I can handle it. It’s funny, I get poetic about it in a way: the sun rises and it sets, the moon comes out, but without that deep hours-long pause — time passing in an instant because you are, well, unconscious, everything blurs into one, breakfast feels like a late night snack, lunch disappears, and dinner is always rushed, trying to cram the day in before the bedtime routine starts. As always, I am at a loss for spoken words. Friends came over for dinner yesterday and I just couldn’t finish my sentences, kept forgetting words, used the wrong words, filled up the space with malapropisms — when does the ‘baby brain’ end? Perhaps when I get more consistent, consecutive rest, or perhaps when the RRBB turns 18 and heads off to university. Who knows. For now, I’m struggling with simple sentences while complex thoughts careen around my brain like snowflakes — always melting before they necessarily land.

We went to the Bloor/Gladstone library last week, and it was glorious. It really is a beautiful building and I’d forgotten how much I enjoy libraries. I haven’t truly visited one on a regular basis since being in grad school, and now that we’re pinching every penny, I simply can’t afford to buy books. I’ve been wondering a lot about other birth stories, wanting to compare experiences, wanting to maybe experience a little catharsis too in terms of my own trials and tribulations. So, one of the books I picked up was Rebecca Eckler’s Knocked Up (#27). I didn’t read anything other then What to Expect When You’re Expecting while I was pregnant, and now that I’m no longer pregnant (although still with-pooch), I am curious to know about other mothers-to-be. I mean, not everyone ends up on the special pregnancy ward of Mt. Sinai hospital with their lungs bleeding before giving birth, right?

In short, I wanted to know what normal was like, in a way. Granted, there was a little too much: “is my ass fat????” throughout Knocked Up, and I don’t know that I would have chosen a c-section had one not been chosen for me (I was oddly looking forward to the experience of giving birth). But I did laugh in various places, and while I know Eckler takes a lot of flack for her self-involved, me-first, examination of both pregnancy and parenthood, I actually enjoyed the lighthearted nature of the book. More chicklit than the nauseating “motherhood makes me a saint” stance of so much that I find online relating to this situation we’re in (yes, motherhood), Knocked Up gave me a bit of a mental break in terms of contemplating all that happened to me, and that’s all I’d ask of it. It was an easy-breezy read and I’m jealous of her ability to stay so completely focussed on not changing in the midst of such a huge change.

That’s not something I’ve been able to do — none of my clothes fit, in fact, I can’t even seem to find three-quarters of my wardrobe, having packed things away to who knows where in the house. My body is so very different and I barely recognize myself in the mirror. The shock of the naked self in the shower is enough to give up food forever, and were it not for the prednisone encouraging my stomach to crave every baked good on the face of this earth, I just might. I need to get more exercise, and I was actually jealous when the Rebecca in Knocked Up went out on a girl date barely two weeks into her daughter’s existence. There’s a level of guilt that I feel the moment I am away from the baby — that I am being a bad mother in a way by not constantly being in his company. I know that’s crazy, and ridiculous, and that doesn’t mean that I don’t hand him off to his father for hours at a time, but it doesn’t seem to be getting any easier leaving him. But to get back to my point, the physical changes — shorter hair, chubbier me, bloating from the meds — feel so much more permanent these days than the mental ones.

The mental part of being a mother seems easy these days. There’s love. You give it out, a lot of it. There’s patience, which sometimes gets tested. There’s joy. There’s boredom, and there’s bliss — but it all comes together in a pretty awesome package. So, I don’t blame someone for obsessing about the size of their ass — it’s overwhelming to contemplate all of the physical and mental changes at the same time, something’s got to give. I was remembering way back in the way back this week. An old boss I had at an evil corporation that I used to work for (which no longer exists) took us out for lunch within the first few months of her assuming a position she later proved she was utterly unqualified for. She had just finished mat leave for her second child and we were talking about babies. At some point, and I can’t remember what preceded the moment, she crinkled up her face and said that she really didn’t like babies, not even her own. Perhaps she likes her kids when they get out of the difficult infant stage, who knows, but all I’ve been thinking this week is how awesome babies are. I know I shouldn’t be so judgmental but as if I didn’t need another reason to post-actively hate the woman, now I even think she’s kind of inhumane. I’ve already forgotten the witching hour, the exhaustion, the frustration of the first little while, and moved on to complete and utter adoration.

I know it won’t always be like this — and we’re so lucky that we have an extremely easy going baby — but, for right now, I’m wallowing in the fun of it all. Charging ahead with crazy vampire kisses and holding that baby high up in the air to hear him squeal. Suffering through the whining when he’s in the car seat to enjoy a beautiful spring day where it neither rains nor snows — where the sun actually feels warm. Staying up far past my bedtime to enjoy a moment of non-couch (baby STILL only sleeps on me for long periods of time) freedom to watch reruns of Law and Order. Listening to him giggle uncontrollably downstairs as my RRHB plays with him. Even sobbing uncontrollably because of the hormones and whatever else is coarsing through my system because of the meds. It’s all awesome in a traditional sense of the word — it inspires awe in me that this is my life now, that my life contains another’s so completely at the moment, all things that I didn’t know when I was just pregnant and hoping to live. I am thankful that I did. I wouldn’t want to miss any of this.

Other library finds for this week: Blink, A History of the World in 10 and 1/2 Chapters, West Toronto Junction, Christina Rossetti: Selected Poems, as well as Knocked Up. I’ve been reading a poem a night before I go to bed, just dipping into them, and found this delicious line that somewhat sums up my last couple weeks: “O clamorous heart, lie still.”

As if it could. As if.

March 10th, 2011

Notes From A House Frau XV

We just got back from Restorative Yoga and the RRBB is conked out and successfully transferred to his bassinet. The photo for this post was the how the baby looked before we headed out to an Oscar party. Yes, he was yawning this much even before the show started. We left the house at 5 PM. He lasted approximately 3 hours with a nap in between, and then we came home. I really enjoyed being social for those few hours. I miss being social. Yet another discovery about myself that I’ve made since spending so much time at home — I always imagined myself a homebody (I think I’ve talked about this before) and now that I’ve got a whole year off, the last place I seem to want to be is tucked away in our beautiful house.

The weather isn’t helping. You can walk in the snow — walking in the rain with a baby just isn’t fun, you can’t carry an umbrella and push the stroller, the baby is stuck under cover, and it’s sort of completely miserable. So, this week was spent feeling a little sad, lonely and isolated. The prednisone getting to my brain in bits, and I actually sobbed one day. Sobbed. It’s all to be expected, and it passes. Today (it’s Saturday now) we went for a nice long walk, and I feel better. The baby has started teething and in a week or so he gets to start solid food. They grow up so fast, don’t they?

Some days, I feel bad that I’m sitting here on the computer while the baby plays, either in his chair or on his activity mat. I know it’s good for him, but I feel guilty, feel like I am depriving him of some parental stimulation, already letting him down and he’s not even 5 months old yet. And then I feel like I’m a crazy multi-tasker, doing one hit of Where is the Green Sheep or Mr. Clumsy or Lost and Found, then writing a sentence when he’s in the chair. Popping my head over the mat and making a funny face while he talks to his baby-friend the octopus or turtle. Then, I write another sentence or two. I read like a maniac while he’s breastfeeding, sometimes, I’m concentrating so hard on the book I don’t even notice he’s fallen back asleep and there goes the sleep training — I should have popped him back into his bassinet 15 minutes ago.

And then I start thinking that I’m too hard on myself, having too many expectations, and spending far too much time worrying about all the things that went wrong with my own childhood (which is few; we had a very happy childhood). The one thing that I am so concerned about, his sleeping, is primarily because I’ve been such an awful sleeper my entire life. I remembering being young, under five at least, and my mother sending me off for a nap in the afternoon. We were living with my grandparents then, in High Park, and the house was full of dark wood — rich, expansive — and all I did when I closed my eyes was imagine things. My brain wouldn’t stop wondering how my body worked, what was the point of being here, where did things go — strange things for a small child to work out, so philosophical. Ha! But I never slept. And as I got older, it only got worse. When I was in grade school, I started daydreaming in bed when I should have been sleeping, keeping myself awake by imagining I was Wonder Woman or some other crazy fantasy. Again, I never slept. And even older still, in university, taking the meds for the disease for the first time, I think I spent all of my second year of university awake — a combination of a small bed, a tall boyfriend, and so much stress. Lots going on at home, very little money, lots of schoolwork, and that ruined me for years.

Finally, after much, much work and my own sleep training, years later I started getting some rest. But it took years of reprogramming myself, and still, every few days I’ll have a night where sleep just eludes me. I think that’s why I imagined the sleepless nights with the RRBB would be no problem, but now, including the many last weeks of pregnancy, I count not sleeping through the night a single time in over eight months. I feel like I’m back in second year university. Going through days in a fog, unable to create full sentences, and feeling so lonely. It’s true that sometimes, you find a great sentence at 3AM but by the time you’ve got a moment to put it in context of a story, or whatever else you’re working on, your mind is too fraught and frustrated that the work suffers anyway.

Thankfully, the RRBB has had two nights in the last week where he has slept for a solid six hours in a row. The first time it happened, I was awake the entire time. The second time, last night, I managed to sleep too, not the whole time, but at least a good portion of it. He still hasn’t slept through the night but I’m imagining, as his mother’s son, it’ll be a while before that happens. And my main lesson for this week is to try and stop worrying about it. Fresh air, a little exercise, an adventure or two, and we’ll all feel a bit better this week, not so sad, lonely and isolated.

Come on spring.

March 6th, 2011

Notes From A House Frau XIX

Thoughts When The Last Time You Slept Well Was Two Tuesdays Ago

The RRBB cracks me up these days. Here’s a picture of him on his activity mat, where he plays everyday for about a half-hour or more before getting cranky and not enjoying the company of his baby-friend the octopus any longer. We’ve started dressing him in real clothes when he leaves the house as well — although that’s hard to do when sleepers are the best things ever, especially if they have a zipper. And a picture of an elephant. Or feet that are fashioned into “shoes.” The whole idea of cuteness just goes into overload on a daily basis in our house. Multiple strangers stop me when I’m out and about and comment upon the beauty of the baby — and some, without permission, natch, reach in the stroller and touch him. I try not to get annoyed. But it’s hard when everything is annoying me these days because I’m so freaking tired.

The being tired isn’t the RRBB’s fault entirely. Sure he’s still waking up once or twice in the night, but it’s mainly the fault of the prednisone that when I am up, I can’t seem to get back to sleep. Or, I can’t get to sleep at all and then there’s no point in lying there being miserable — I might as well get up and read and make more to-do lists than listen to both of the men in my life snore away happily. Oddly, it doesn’t make me angry at all to not be sleeping these days, a little grumpy, a little out of sorts, but nothing like the rage that I usually feel after months and months of being on drugs that keep you awake and turn your brain inside out.

Last week I felt a little of the prednisone crazies for the first time. I was a bit down in the dumps thinking that it’s been almost six months of really intense treatment for the disease this time around, and I’m over a quarter of the way through my maternity leave. Winter seems never-ending. The snow is still beautiful and we are still getting out and about but my son (my son!) hates hats. He screams when I put them on, screams until he’s resigned that I’m not going to take it off, and then screams when his head gets too hot. So I will be very glad when it comes time to abandon his head to the elements and walk around unencumbered by animal-inspired toques.

As I sat up doing a restorative yoga posture called “legs up the wall” in the RRBB’s bedroom (because he’s still sleeping in ours) reading the other night, yet again after trying to go to bed early, after finally getting the baby down, after my RRHB put down his book and we turned off the light, and I discovered that sleep was like the mystical South for early explorers — something on the horizon to be expected but never experienced — I just felt sad. Overwhelmingly sad. And for no reason. Sometimes, I think the trauma and the stress of the disease comes out of my body in sadness — the ache of my poor beleagured organs can’t express themselves and so I just get sad, sad, sad.

It’s hard not to feel the pressure of the physical changes of the disease. Hard not to feel frustrated when you see people who gave birth the day after you looking like a million bucks on Oprah (don’t make me say who; it’s embarrassing enough to be watching Oprah), and you’ve still got a paunch and your hair is terrible despite a cute new hair cut and you’ve got a pooch and your stretch marks are still purple and tiger-like and you haven’t had a shower in two days because your RRHB is working and you’ve got the baby and haven’t talked to anyone in days and are kind of lonely and it’s 2AM and there is no sleep in sight. See, sad.

And I tried, for about 24 hours, to “Change [My] Life in 30 Days” as per a challenge in Chatelaine magazine. They dared me; I tried — I ate well (followed their 80% rule and then gave up and went right back to eating three muffins and some organic jujubes for lunch), I “scheduled fun,” which sounded stupid even when I was reading it, and could just not bring myself to go on a “laughter date.” I’m impressed with the writer’s ability to come up with 30 ways to change your life, small things to make your everyday just that little bit better, but they were not the long lasting, calming changes that I was craving. They were a bit too Gretchen Rubin (not bad; just not for me) for my taste. So, I’ve been thinking of my own 30-day challenge, because, of course, what I need is more to-do lists and ways to improve myself during an already stressful time, something to try next month and to keep track of here. Where I’d start — create a healthy budget and stick to it. The trouble with these “dares” is that they aren’t long-lasting. You do it one day and then drop it the next. My life isn’t going to be made better or different or less sad by only having the “pick six” things on my to-do list. Seriously, shut up Chatelaine. When did you get so vapid?

Self-improvement seems like such an easy goal when you’ve got an entire year of not working. When you’re committed to examining every aspect of your life — not only because you’re thinking every day of how your life impacts a wee one in your care, but because you never want to take that life for granted. I’m tired of almost dying every couple of years. I’m exhausted from fighting the Wegener’s. I’m feeling like I’ve had my fill of epic tragedy. I don’t want to talk about my life in terms of the things that have been denied to me — because it’s so much better to actually think about it in terms of what my life experience has opened up for me. There’s a richness in the strength and understanding that comes from struggle. But sometimes, just for a couple of hours, I wish it wasn’t all so blood hard all the time.

A year ago, even well before I was pregnant, I never would have imagined I could walk so far and for so long. But, like anything else in life, the more you do it, the better you get, and it seems that the more I walk, the more I can walk. I’d make all kinds of excuses: my hip, too tired from work, too far, let’s just take the car — and now I get angry if I can’t get out and get going. A “block” means at least an hour, maybe two, and while I’m doing things along the way, grocery shopping, to-do list attacking, I’m also pounding out the sadness, leaving it a bit behind as I go — it’s the days upon days that I get stuck in a rut, where I am too down to leave the house, those are the moments when the prednisone wins. When the disease wins. When I am struggling to know myself outside of the diagnosis and the bloodwork and the peeing in jugs and the blood pressure issues and the preeclampsia and the rest of it all. If only it wasn’t there in my face every time I look in the mirror — the “moon” cheeks and the thin hair. If only I could leave those reminders behind as well.

Annywaay, I am rambling. The baby’s sleeping still and I’m taking advantage and rolling out words like thunder, and not really thinking through what I’m writing about. Perhaps this is the moment to stop.

February 28th, 2011

Notes From A House Frau XIIX

Between Love And A Hard Place

First of all, I can’t believe that our RRBB was ever that small. I’m being brave putting this picture online. It was taken during the heart of all the tragedy and trouble that surrounded his fairly easy birth. And now, 4 months later, he’s giant — 14 pounds and almost 2 feet long; he survived and flourished as my body recuperated from all the drama surrounding the disease, my pregnancy, and then our delivery.

I am so torn these days. As much as I want the time to pass — so he’s a little bit older, so he sleeps a bit better, so I get more sleep, just realizing that he’s already doubled in size in 4 months makes me realize that people telling you time flies isn’t just a platitude.

I have a rolling to-do list that never seems to get the most important items crossed off, and I can never seem to find the time in a day just to get caught up with blogging. And we’re not even doing anything. It’s the non-productivity that I find most daunting about being at home. The busy work. The mindless hours spent reading while baby sleeps on me because we still can’t train him to sleep anywhere else during the day. I feel like Sisyphus and the rock — only I’m way more tired than I ever imagined a god might be. There’s a lot of existential thinking that goes on in the wee hours of the night. A lot of first sentences are being composed. A lot of sleeping happens by the men I am surrounded by, not so much by me. I know it’s the meds and, in the past, these sleepless nights used to be filled with despair. An aching, longing kind of sadness that was punctuated by extreme self-hatred. I know, now, that was the meds too, a lovely thing called prednisone-induced psychosis, but rationalizing that it’s the drugs never stopped my self-loathing, never stopped the 4AM struggles with whether or not I even wanted to be alive.

There’s none of that this time around when battling the disease. The sleepless nights are passed in relative calm. Like I said, I make a lot of to-do lists. I eat breakfast at 3AM and take my meds so they get through my system before the baby wakes up again. We sleep in together some mornings, him nestled in the crook of my arm, as he has done since the moment he was born. These moments are fleeting, just as the sadness was momentary as compared to how much time I’ve spent actually healthy vs. in the throws of the disease; but, when you’re there, the time stretches out, long, sinewy, and I have to force myself to just enjoy it. Instead, like this morning, when I couldn’t sleep but RRBB was snoring happily, I had all the blog posts rolling through my head, enough to risk trying to put him down — pop open go his eyes, wide smile on his face, and then we’re downstairs, and then he’s playing on his activity mat, and I’m playing with him, and then he’s tired again and, here we go, he’s sleeping on me for another hour and I’m starving and have to pee and would really like to make a sandwich or a smoothie.

And then, the day is just gone. My RRHB is back from errands or work or recording and gives me a chance to have a shower (oh, the humanity!). We make dinner and then it’s the endless session of trying to get the baby down for the night. And this, this is how the time flies, all of a sudden another week has gone by and I’ve done stuff: gone to the mall, bought soap, made dinner (once!), got groceries, half-cleaned something, written more to-do lists, and am utterly exhausted having accomplished nothing. I am not a girl used to accomplishing nothing. My time is fractured all over the place — sure, I’ve got lots of it, but it’s filled up with the care of something so precious that my heart aches with the importance of it all — and sometimes I wish, hating myself for it, that I could have just a little bit of it back. Yet, there’s no resentment, no anger, just wishful thinking. I’m torn between the two lives that I’ve created: the old me, the non-mom and the new me, mother to the RRBB.

There was a writing contest I wanted to enter but probably won’t because I never win writing contests. The theme, “How Motherhood has Changed You,” seemed trite in a way, no, that’s not the right word; too obvious, that’s a better phrase, because the change is so shocking, so complete and so utterly different that for a slow learner like myself, it’s hard to come to terms with — 4 months in and I’m still searching for the right words to describe it.

I’m starting to impose some structure on our days. While not a routine per se, we do have story time in the morning. Lately we are reading Where is the Green Sheep, a new Mister Men book each day (because I ADORE them), some Dr. Seuss, and Oliver Jeffers. I’m not sure baby is paying any attention at all, mainly he gets excited by the kiss bombs in the middle of story time vs. story time itself, but I love reading aloud. Then he sleeps, maybe I sleep too, then we go out for a walk, run errands, and by the time we get back it’s afternoon nap time — which means I’m stuck for sometimes three hours in one place, if he’s particularly fussy, playing iPad Scrabble and reading. I’m being relentless about dropping him in his bed when he nods off, but the wailing, good gravy, that ensues isn’t worth it — why would I WANT to make my child unhappy?

But it can’t continue, oh, this accidental parenting (damn you Baby Whisperer, damn you). But I need some time. Just a little bit, just a teeny, tiny bit, to myself, and it can’t be at 2 AM because I’m neither awake nor asleep enough in those moments to get anything accomplished. But I sure think about everything I’d like to accomplish. How has motherhood changed me? I don’t think that it has — my perspective, my day-to-day routines, and my life is certainly different, but I am still the same person, deep down, I still want all the same things. I still believe in all the same causes. I still want to do all the same things — I just don’t have any time to do them.

Winter was wonderful. But its time has come and gone. We managed brilliantly through snow storms and disease clouds. We still got out. We didn’t go stir crazy. We almost destroyed our poor stroller for all the bumps and boulders on the sidewalks. Yet, I’m craving better weather, sunshine that actually carries warmth, ridding the car seat of bunting, and days where I can cart a pen and a notebook to a park with the RRBB and just sit outside. Just a few more weeks and I’ll welcome the smell of melting dog shit and all the cigarette butts and other debris that litters the streets around my neighbourhood. There will be parks and swings and swimming and gardening and time will pass too quickly and I will try and savour every moment.

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Girl with titanium hip will rock. Girl with titanium hip will write. Girl with titanium hip will read. Girl with titanium hip will battle crazy-ass disease called Wegener's Granulomatosis. Now stuff that in your spelling bee!

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