One foot in front of the other

Snuggle Party

If you’ve ever experienced deep grief, you know this. If you’ve mourned a parent or spouse or child, been intimately involved with the care of someone fighting cancer, survived an attack, had a sick kid, dealt with some kind of grief that came out of nowhere and upended your whole world, you’ve seen that there’s a whole other world right along side the one everybody accepts as reality.

Right along side of all the mundane trips to the grocery store and Facebook political arguments, there are people walking around like shadows, confused as to how the whole world is going along like nothing has changed when their world will never be the same.

It’s not the same as being depressed. That’s a different shadow world. Most of the time I’m not even sad, although there’s plenty of times when it sneaks up on me and I need to respect it and give the sadness the attention it requires so it will move on without me. Most of the time I’m just feeling kind of melancholy as I keep moving to get the job done. Meals need to be cooked, then fed, then cleaned up. Then Atti needs to be cleaned up because eating every meal in bed makes a gross mess even if you have full use of your motor functions. He needs to be entertained, and moved from room to room, and kept calm and hopeful, and I have stolen moments here and there until Bear gets home from work.

Meanwhile I check in on Facebook and see people going about like normal. And it’s just confusing. People have been so kind and supportive, I have no complaints about my friends, it’s just…weird.

One time I watched an episode of Law and Order that was particularly haunting to me. It was the one where they did a take on the Michael Jackson molestation scandal and in the L&O universe, the parents knew what was going on and allowed it to happen so they could have money to pay off medical bills. I found the whole thing so shocking, and possible, that I dreamt about it all night. And then when I woke up, in that early morning grogginess, I remember waking up and checking my phone and wondering why it wasn’t every lead story in the news.

That’s how my life feels right now.

I see something silly in my twitter feed and I think, “Seriously? THIS is what you’re thinking about right now? When calamity is so close to all of us at any moment? When tragedy has moved in and made themselves at home?” And then I have to remind myself, every time, that it’s my tragedy. Not the world’s tragedy. It is only this big to me.

I’m sad, but I’m not, I don’t know, in danger. This is different. I almost feel taken up. Inducted. Transfigured. It’s like trying to describe an altered state or a religious experience. It’s ineffable. It’s hard, it’s sad, but it doesn’t always feel as simple as that. It’s deep. It’s profound. It’s heavy.

This probably sounds like one of the most depressing things I’ve ever written, but I don’t feel that way about it. Well, sometimes I do. I’m not a rock. I am definitely skirting around depression and using all of my strategies to keep it at bay. But I almost have a sense of awe about it all.
Like when an astronaut does a space walk and gets a glimpse of their place in all of creation. Like I’ve gone so far down I’ve come all the way back around and I’m looking at the backside of enlightenment. I’m astounded that in spite of all my sorrow, the world keeps turning. And somehow, in my dark way, I find that hopeful.

When I was 15 I had foot surgery and very much like Atti right now, I spent 6 weeks mostly in bed. I got to move around on crutches, but that was extremely hard for a clutzy girl on the slick streets of the Pacific Northwest. I didn’t have anyone to take care of me so I had to crawl up the stairs to get myself some food and find my own way to keep myself entertained in the pre-Internet pre-iPad days. I spent most of my time cross stitching a sampler that said “This too shall pass.” I tried to believe that and tried to let that be enough. But for 15 year old me 6 weeks was an eternity. It wasn’t enough. I finished that sampler and I stuffed it in a drawer. But now, with a fully developed prefrontal cortex and some life experience behind me, it might be.

That I think is the lesson of this shadow grief space. It all passes. Life passes. Loved ones pass. Possibility passes. Grief passes. The rain is pouring down outside as I type. The local dam opened a spillway for the first time after drought plagued years. The morning glories are spreading across the redwood bark in the yard. Kids come home from school and splash in the puddles. The squirrels and the birds are fighting over the birdfeeder. Odds are that I will never have another baby. Parents get older. Friends get sick. It all passes.

It’s all only unfair if you believe you have a right to expect something different. But you don’t. It all passes. None of us have the right to break the laws of nature. It all passes.

I’m not a fan of one size fits all self help approaches. I don’t believe that suffering makes you a better person. I think that most people allow suffering to pickle them and then they punish the world for their experiences. I don’t believe that Atti was given to us because we’re such exceptional parents and could therefore handle his disabilities. Foster care is so full of special needs kids there is no safe place for them all.

What I believe is that empathy makes you a better person. And anytime we experience suffering, we can choose to let it expand our empathy or shrink our souls. In this shadow grief space, I see how densely populated it is. How many people are walking with hurts that the rest of the world refuses to acknowledge. How healing it is to have your grief witnessed.

It will pass, but I hope that I can remember this.

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Welcome to Bummertown

Most depressing picture ever

My life has always been relentless. But this is ridiculous.

Everybody suffers in this life, and I really really dislike it when people stay stuck in their pain and treasure it. When they insist that their pain is THE MOST SPECIAL PAIN. When they refuse to gain empathy or perspective and just canker. I’m not one of those people that falls for the “someone always has it worse so you don’t get to be sad” trap, but I am someone who believes that pain is not an exclusive club and you are never alone in your grief. Which is why I blog.

I’m not a war refugee or a torture survivor. I’ve never been incarcerated for something I didn’t do. But that’s pretty much how far I have to go to find someone who has had it worse than me, and in a way that reveals either my total brokenness or my health and resilience, I can never decide which, I find that somehow comforting. And hilarious.

It’s hilarious because I have a twisted sense of humor and an appreciation for the absurd. It’s comforting because this world does not know how to deal with pain. Every negative emotion is a problem. And if you are a religious person, it’s of the devil. We’re supposed to fake it till we make it and look on the bright side and have a positive attitude. And those things are all fine if you’re grumpy over daylight savings time or frustrated with the people you have to share a living space with. It does not work for tragedy. And it DOES NOT work for mental illness. But that’s what we get anyway. One size fits all advice even when it binds us.

Because of that, we often need permission to feel those feelings. We need someone to say, “That is really hard. It must make you sad.” or “That would make me feel really angry.” Most of the work I see happening in group therapy or among friends or in my role as a peer counselor is validation. “I see that. It would make me feel frustrated too,” feels like salve on a burn. “You are right to feel that way,” is like an incantation. We spend our lives either hiding and ignoring our feelings, or fighting for the right to have them.

So when I am *this* sad, and *this* weary, it actually feels perversely comforting to look at the facts and go, “Yeah. You should be sad. The only thing that would be worse is if you were trying to escape Syria right now.”

Atti’s surgery went really really well, but his recovery has been super rough. He had to stay twice as long in the hospital as he was expected to because a body with Cerebral Palsy is like a beautiful 150 year old house. Even in the renovations you’re going to run into problems. Atti’s bladder refused to work, so he had to be catheterized for far longer than expected. And the catheter kept clogging leaving him writhing in agony and screaming “I’m Sorry! I’m sorry!” over and over again, but unable to tell us where it hurt or what the problem was. His spastic body ramped up with fear and pain until his whole body was tied up with cramps, and every treatment for one thing caused a new problem somewhere else. He was in such turmoil that he could only be calmed if one of us stood at his bedside petting his hair and playing his special lullaby over and over and over again. For seven straight days.

And in the middle of all this, I started bleeding.

For two years we’ve aggressively been pursuing fertility treatments. Treatments that forced me into a mental hospital and major surgery. And, because, of course, when all the conditions were finally right for embryo transfer, Atti was about to go in for the surgery we’ve been waiting for for a year. Of course. And while he was in this painful recovery process, that’s when it became obvious the procedure failed.

It’s hard to know what to call this. It wasn’t that I just got my period – this was a rejection and far more physically involved, but since I wasn’t technically pregnant it’s not exactly a miscarriage either. But those embryos meant something to us. To Bear they were babies. To me they were possibility. And either way, they’re gone.

And we just had to keep putting one foot in front of the other to be there for our boy.

We took Atti home a few days after that and it’s still been harrowing. His catheter got caught on the wheelchair when we were trying to load him into the car and broke and partially pulled out. Atti was screaming, I thought we’d have to be readmitted, and there was a moment where I honestly began to collapse and prayed for death to claim me there and then in the hospital parking lot.

His pain has been so intense we’ve had to keep him medicated around the clock, which meant we were waking up every four hours to screams of pain and had to soothe him back to sleep for another hour, like we had a newborn that couldn’t be removed from their crib. His catheter clogged again, only, not being a medical professional, I didn’t realize what I was looking at and thought it was opioid constipation, so he screamed all day until a nurse friend came over to help us. Then it happened again the next morning and we had to take him back in to the hospital and spend the whole day there while they tried to see if he was ready to leave the catheter behind.

Atti in recovery

Today he is outside in the sunshine playing on his ipad. He has left the pain medications behind and is now soothed by music and attention. He’s still strapped into all his immobilizers and can’t sit up, but it’s only boredom we have to fight now, not pain. Which means that all that grief I’ve been shoving away is sneaking back up on me now. So I tell Atti I have to work and go into the bathroom for a 5 minute break down. Or I’ll cry at his bedside and tell him that I’m sad we don’t get to have more babies in our family right now because I think it’s important to show him how to cope with hard emotions.

I’ve been hiding in work – work I haven’t announced here yet because there was too much hard stuff in the way, but I’m developing a media startup, complete with keeping startup hours – but over the last couple of days I’ve been blocked. Completely blocked over the dumbest stuff. I need to work on our social media campaign and just write a bunch of FB statuses, and I can’t do it. I’m staring at cursors and debilitated by depression. Because now that the crisis is over, it’s time to process. And I don’t want to.

But that’s another thing about having a life as hard as mine. You only have two choices for survival: 1) ignore and deny it all and let it corrupt your soul, or 2) deal with your shit. So I’m dealing.

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So. What’s new with you?

IMG_2142

Hey pals.

So. Last we spoke I was calling “uncle” during the run up to Christmas. Turns out that major abdominal surgery during the holidays tends to throw a monkey wrench in your productivity plans. The recovery was pretty brutal. Six weeks, so, technically, I’m STILL recovering. But today I got Atticus on the bus all by myself, and then went for a two mile walk around the lake. That feels like a benchmark.

During my post-op appointment my surgeon told me all about what he found, and like surgeons often do, he made it sound like it wasn’t that out of the ordinary. And for him, maybe it wasn’t. All he does is look at endometriosis ridden bodies, after all. But when my fertility clinic saw it they all lost their minds. My nurse Sue called me up saying “Oh my gosh!! We had no idea it was so involved! How were you walking?!” Which, I won’t lie, felt pretty great. Some people compete in triathlons, I just get through my day with my innards all attached to each other.

There was scarring and adhesions and fibroids just EVERYWHERE. On my intestines, blocking my uterus, attaching my ovaries to the inside of my pelvic wall like they were one of those fraternity pranks where someone is plastered to the wall with duct tape. My bladder was “fused” (that was the actual word the surgeon used) to my uterus. And of course scar tissue from the emergency C-section that saved me and Atti. It was a crime scene in there.

Recovery has been super hard – give thanks for your abdominal muscles next time you need to cough or poop – but I’m feeling so much better. It’s been years since I had this much energy and motivation. Since I had…hope? That I wouldn’t always need to apologize for backing out? Or begging off? Or asking for help? That maybe, if I’m lucky, I’ll be able to just..do..all the things that so many people take for granted.

Including having a baby. We’re in the middle of our latest attempt at a cycle right now. Just yesterday I climbed up into those stirrups that I should really just start paying rent for at this point, and had another ultrasound. From my many years of tracking my ovulation, I know that I tend to go pretty late in my cycle, which is a bit of a problem when you’re trying to control so many variables. My reproductive system is just too punk rock to be controlled, though. It’s all “Go ahead and pump all the medicine you want in me. I won’t be rushed. I do what I want. You might call me uterus, but I say it’s uterMe.” And then it puts on some aviator shades as a screaming YEOOOOOWWW echoes behind it.

If my dang body will just play along already, then we’re hoping for a transfer in a couple of weeks. Just in time for yet another December birthday in the family.

My niece is still living with us and that is going awesome. I have a whole lot I want to say about that, but I can’t do it today. Or maybe ever. Dang grown people with their own idea about what they want spread on the internet. It has been a big adjustment but a wonderful one. And maybe one of these days I’ll convince her to let me put her on the blog. She is so incredibly gorgeous and talented, and maybe the only person I’ve ever known who didn’t want to share that with the Internet.

There is still so much more to talk about. Atti’s new wheelchair and his big breakthroughs, my own big endeavors, my plans to make all my dreams come true, and how Force Awakens blew my mind. But I’m trying to learn to pace myself. I am still recovering after all.

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Show You Care

Happy love

This neverending fertility journey I’m on has been horrific. I got some more bad news this week, but I’ll get into that another day. Right now I’m deep into self-care mode with lots of puzzle doing, cat snuggling, and playing with Atti to get me through the hard stuff.

As I’ve been wading through all my tender feelings, it’s really hard to not sink into a place of desperation or loneliness. It’s really really easy to succumb to all the magical thinking that tells you there’s a reason you can’t have kids, and that it’s because there is something wrong with you. This infertility stuff, I tell you, it gets right down to the core of your identity and the love you have to give and long to receive.

But one beautiful bright spot in all this darkness is how people have shown up for me.

When I go through a hard time, I cocoon. I don’t leave the house, I don’t reach out for help, I hide in a safe space until I feel strong enough to re-engage with the world. Of course, this coping mechanism comes with some significant drawbacks. Namely, when the hard time is your own body and mind, a cocoon isn’t always a safe place. And often, hiding by yourself just intensifies the loneliness. But what is a person to do when they need support but don’t have the energy or courage to ask? You ask in whatever way you can bring yourself to. Sometimes that’s just squeaking out “help” to a trusted friend, sometimes it’s attending a meeting, sometimes it’s even vaguebooking.

Over the last few days the texts and PM’s and emails have been flying my way from all sides. Some who recognize what it means when I post about having a “bummer day” while in the midst of fertility treatments. Some responding to a more detailed call for help, and some just following an impulse inspired by whatever you want to call the human connection we all share. I call it God.

As I’ve been lost in the fog of my own problems, I’m constantly amazed at the goodness of people, putting aside their own problems to care about mine. To take the time to send a text while they’re racing around with all their own responsibilities. Who forgive me when I need to take some time to respond from the well I’m at the bottom of. Who never ignore that impulse to offer kindness.

When I’m more myself, I tend to wander through life with a big goofy grin on my face and my unmistakable cackle announcing my arrival. My laugh is something I’ve been self-conscious of forever – it is loud and omnipresent, but I know that if you ask people who love me what they love about me, my laugh comes to the top of the list. And even strangers have told me that my laugh cheered them up. How silly that something so small as a laugh is all it takes to spread a little joy. When something as untaxing as a high five can turn a day around. From my current vantage point under the covers, a text is hope. A friendly nod can overcome so much sorrow.

SoulPancake, home of Kitten Therapy and Kid President, has launched their latest viral campaign to put some goodness into the world by challenging people to show they care. This video totally made me cry at how beautiful the world is. From the high-fiving baby to the gentleman on the phone spelling out plainly exactly what the person on the other end meant to them, it’s a lovely reminder to step outside ourselves and our fear of rejection and prove how much love is in the world.

Because there is always more love than loneliness. And it takes so little to remind us of that. So do it today. #showyoucare

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Newsflash: In Vitro is hard!

Fertility Meds

Every time I think I’ve got the hard stuff of this year behind me and I’m ready to get back on the horse of regular life, the next thing comes along and knocks me flat again. We’re now at a year and a half of health garbage taking over my life – when it wasn’t outright threatening it – all with the hope of having another baby. This kid better be dang cute, that’s all I have to say. And, of course, it better exist.

I have gotten through the egg retrieval phase of IVF, which really really sucked. Like, bad. Over the years I’ve known hundreds of people who have done IVF and everyone said it was hard, but nobody really prepared me for exactly how hard it is. Granted, I am a medical marvel that will find every possible complication, but still. I had to put every single other thing in my life on the back burner and just do this. While Bear got Atti on the bus and raced home from work to pick him up, I laid on the couch watching old episodes of the Bachelor and moaning.

Every ounce of energy that wasn’t necessary for breathing was draining into my ovaries. I slept and slept and slept and I was still exhausted as my egg factories were kicked into hyperdrive, reacting to the oodles of medication I was taking every day. My belly was so swollen I looked like a waterbed, and I was covered from hip to belly button in giant bruises and puncture marks.

Since I’m one of those women who has pain during ovulation, and here I was hyper ovulating, it was not only exhausting, but PAINFUL. And even taking advil freaked me out, panicked I’d be causing harm to the eggs or risking the whole process. I used a heating pad to try and get a little relief but even then I was too worried about making hard boiled eggs to have it help much.

But all of that investment in energy paid off when we got news that there were over 30 eggs waiting to be retrieved. I went in for a quick procedure where they sedated me and then used a needle to aspirate up each of those little eggs. By the time I woke up they were already at the lab being joined by a sperm that had been individually chosen as the best candidate. I had visions of embryologists looking through their microscopes at a little sperm beauty pageant, the winner crowned and injected directly into the egg. Then we just had to wait and let nature take its course.

Of course, since I am, once again, a medical oddity, I had complications even from this little procedure. I had some bleeding that they couldn’t get stopped easily, which resulted in bleeding into my abdominal cavity. Apparently, I’ve learned the hard way, there is a major nerve that runs underneath the diaphragm and sends the impulse to move up and down to breathe. This nerve gets aggressively irritated by blood. So for nearly three weeks this nerve was driving me to distraction. The first night I felt like I was drowning, it felt like I couldn’t get my lungs to fill. Then as my body slowly, slowly, slowly absorbed the blood that was causing all the problems, I began to breathe easier, but I still had intense shooting nerve pain up into my shoulder. After a month of exhaustion making the eggs, I had another month of pain just trying to heal from getting them.

It was disheartening to watch the numbers go down at each stage of development – 30+ eggs retrieved, 16 fertilized, 12 grew to day 2, 8 made it to “blast stage” and on and on. I kept trying to remind myself that it didn’t matter how many embryos we had as long as we got a baby at the end, but it was terrifying to think of everything I’d put in to this process and know that it could all still go wrong at so many different points.

Just before we were ready to proceed to the implantation stage – where they put the embryos into my uterus and wait to see if a pregnancy is achieved – we got yet another twist thanks to my dang malfunctioning body. My hormone levels were out of whack and they felt it was best to wait before trying to get pregnant. So they took our little embryos and popped them in the freezer until I could get everything all cozy for them. I admit, I was crushed. This just felt one too far. After all the pain and exhaustion and sacrifice, to still not have it work out for us, I just about lost it. But once I could calm down and think it all through, I was kind of glad to have a little time to heal before launching into a pregnancy (knock on wood). This whole process has been so rough, it ended up being a good thing to be able to get myself back together before dealing with pregnancy symptoms on top of all the pain and exhaustion I’d just gotten through.

We’ve got four little embryos waiting for us in the freezer, and now we’re just waiting until I can dedicate another month to shots and daily office visits to see if all of this suffering of the last year and a half will prove fruitful. Hopefully August will be a lucky month. Hopefully those four little popsicle babies will actually make it into this world. And hopefully they’ll all be just like Atticus.

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Sprout

Sprout

This was my Mother’s Day present from Atti, and it’s a pretty fitting metaphor for what I’m up to right now.

Remember when I talked about Therapeutic Boredom? And how being forced to slow down because of all the crazy hormones was forcing me to learn stuff? I had no idea.

I work really really hard at being emotionally healthy, I think that’s clear. And most days I feel like I’m pretty on top of things in that department. I know when to rest and when to push and what cues to listen to, and I make it a real priority. That’s how somebody can come from my kind of background and wind up as the person I am. A lot of really hard scary emotional work.

And other than what it takes to live with my mental illnesses, I feel like I’m pretty sorted. The stuff of my childhood doesn’t grieve me like it used to. Entire weeks will go by without me thinking about what used to cause me tremendous pain. I didn’t see a breakthrough coming because I didn’t think I needed a breakthrough.

But apparently I did. And forgive me for vague blogging again, but for once it’s too personal to blog about. I didn’t think I would have a limit, but what do you know? I do!

It’s actually all great news. Once upon a time I would have come up against something that brought the grief back and I would have taken to my bed for a week. This time, I actually feel better. I feel like a literal weight is off of me. I feel proud of myself for being strong and brave enough to face hard things, and proud that I can use the tools I’ve acquired to take care of myself. I’ve been meditating, and taking long baths, and seeking quiet and candlelight, and making myself as physically relaxed and comfortable as I can be so that I can do the hard interior work of facing the worst, darkest, most terrifying corners and scrubbing them clean.

This might sound twisted, but I’m actually enjoying it. My body is not healthy enough to let me use it to feel powerful. No marathons or unassisted births for me. But this? This feels powerful. I am healing myself with the power of my own mind. I am sorting through old scripts, beliefs that don’t serve me, things that other people believe about me that I don’t, casting them all away, and watching as it’s so effective I feel it physically.

I don’t know why it is I seem to need hard horrible times to learn lessons, but I do. At least I can be grateful I’m learning the lessons. Maybe then I’ll never need to go through this again.

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Feeling Rebirthed

Easter 2014
We had a quiet Easter over here. Just the three of us with a no-frills ham dinner, matching clothes courtesy of Old Navy so I didn’t even have to work at that, the first hour of church and then a visit to Bear’s work to check in on the patients and spend the holiday with his work family, then home for a nap. It was exactly the speed I’m running right now.

Last week I went in to get my second shot of Lupron and they couldn’t give it to me. The medicine got recalled and they didn’t have any new stuff. They seemed to feel that the dose I got didn’t apply to the recall, but I’m wondering if that’s why things have been so different this time. Why my emotions are on overdrive and completely disconnected from my brain, why I’m still feeling pain a month in, why I’m still living with the worst of the endo symptoms and the worst of the Lupron symptoms at the same time.

But all this time being forced off my feet has been so good for me in so many ways. I’m a big believer in what Joyce Carol Oates calls “Therapeutic Boredom.” That it’s only in the still and quiet times that healing can take place and discoveries can come to light. I’ve made a whole bunch of changes behind the scenes that are too inside baseball to bother talking about since they won’t change much about the blog but change everything about my workload. I’ve spent time examining my goals to see if what I’m spending my time on is what I really truly want out of life or if it’s where I’m spending my time because it’s “enough” for me. I’ve asked myself if I’m doing what I really want to be doing or if I’m doing things as a distraction from taking the risks I really want to be taking. And I’ve found some new horizons for myself.

Like I said, all this vague blogging won’t change a ton here, and it’s all too early to discuss even if it would, but I’m writing about it because I feel like I’m not alone.

I worked at a M&A firm back in the early 2000’s, and when the economy dropped our work dribbled away from a crazy torrent to a whole lot of nothing. My boss at the time called me into her office to talk to me about how much time I was spending on the internet and she said something that’s stuck with me, “We have to be careful not to let the work expand to fill our time. We have to let our time expand our work.” It was a great reminder then to use our slow time productively and to work just as hard in the slow times as I did in the fast times. But I also think about it a lot in my motherhood.

I can get so obsessed with getting a recipe right that I go a whole week without making dinner for my family. I can take something like a Halloween costume and make it as time consuming and important as the Oscars. I can have a big idea or a big dream and put it off for months or years while I work on holiday decorations or printables. None of those things are invalid or wrong by themselves, but they are a distraction if they’re not what I truly want for myself.

So with this slow down I’ve been forced to take, I’ve been asking myself some hard questions and reshuffling my priorities. And then a funny thing happened. I rediscovered my love for what I’ve been doing all along. I longed to come back here and talk through all my thoughts, I felt my creativity revving back up, but I also found the drive to tackle the big dreams. I had just let things get out of order and putting everything back where it belonged helped me rediscover my love and enthusiasm for all of it.

So hopefully soon I’ll have the big dreams far enough along to share, but in the meantime I still have some great things coming up. I’ve finally begun tackling the Master Bedroom makeover I’ve had as a crafty goal for more years than I can count and I have some pretty amazing results to share with you. And a whole new attitude while I do it.

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Hormone Crazy

Hello my dear friends. Thanks for being so patient with me during my unexpected hiatus. And thank you ever so much to those of you who emailed to check up on me. You folks are good people and the world is better because of you. Thank you for your kindness to a lady from the internet.

I’ve gotten walloped by a bunch of bad things in a row and I just plain reached the end of my resources. The final straw was starting this new course of medication. It’s not new to me, this is my third round of Lupron and it’s been a miracle drug for me every time, but this time around is totally different. Lupron often comes with some pretty gnarly side effects, and until now I’ve been lucky enough to largely avoid them. But this time? Holy crap. My brain has been snatched and replaced with that of a 12 year old girl. It is marinating in hormones so powerful that I cry because I’m lonely when my family is in the room, I cry because I love them so much, and then I cry again because I miss Atti when he’s asleep. I cry because it’s raining, I rage because I have a food craving I can’t satisfy, I laugh hysterically at how ridiculous I am, and then I cry at how ridiculous I am. I’m weak and lightheaded with hot flashes that keep me up all night and then fatigue that nails me to the couch all day.

These three weeks were exactly what I needed – the permission to just deal with what I need to deal with and to disappear for a while. I’m not yet over the worst of it – I get a shot every month and I’m hoping that the second shot will bring me a little equilibrium – so I’m still going to have to take things a little easier than I used to, but at least I’m rested now and not at such a low emotional ebb. And who knows, maybe at the end of all this I’ll not only be healthy, but manage to get a little baby out of it all too.

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Welcome Back Endometriosis. You weren’t missed.

Pills
I’ve had to come to a tough realization over the last couple of weeks: The endo is back.

It never truly goes away. Whenever I finish a course of the drugs that put me through menopause I start right back up with the slow growth process. Eventually I have to admit that midol won’t get me through my period. And then slowly I’ll go from having one bad pain day to having a bad pain week when I’m on my period. And then eventually I’ll have pain around the time of ovulation. And now I have to admit that I’m having pain every day.

This really blows.

Aside from the obvious, pain hurts and that sucks, it’s hard to manage my life when I have to be on serious pain killers. Right now I have to wake up and rush through any work that requires my faculties. Any writing, any thinking, any interviews or public speaking, I have to do it all while gritting my teeth until I have to cry uncle and go take the drugs. And then I have to deal with all the guilt and shame that comes along with chronic illness – feeling like a waste of space, feeling guilty for being a burden, feeling intense intense shame over being stoned in front of Atticus and not present for him. Every day I have to decide, do I want to be in pain? Or do I want to be functional? Which is a higher priority? And because a mom taking prescription drugs is such a ridiculous cliche, I try as hard as I can to never let people see me medicated. I’ll talk about it publicly on my own terms, but I don’t ever want a teacher or bus driver to see me altered. And I obviously never drive on medication – duh – which puts another crimp in my life management plans. No trips to Target for diapers or to the grocery store when the fridge is empty.

But what I’m really struggling with right now is the fear. I’m afraid it will get as bad as it was in my 20’s when I was completely disabled. Back when I first started blogging because I was on pain medication every minute I was awake and I could go weeks without talking to a human besides Bear. I lost a decade already to this disease, it’s terrifying to contemplate going back there.

Of course, this time I actually have health insurance. I have a doctor who doesn’t think I’m crazy or that periods are supposed to hurt. I have a treatment plan in place and I just have to wait until the medicine is available at the right time in my cycle. It shouldn’t be much longer before I’m complaining about hot flashes and food cravings again.

But for today, I’m mourning. I’m mourning my own limitations, I’m mourning the pain I feel and all the emotions that come with that, and I’m mourning that I can’t be the kind of mom I want to be. I guess the good thing is that in just a little while the pain medication will kick in and I’ll find it all hilarious.

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Growing up is breaking my heart

Atti's growing up

Whenever we stay at Grandma’s house, we all sleep in one big bed. It’s a luxury I treasure since we don’t do it at home – early mornings and places to get mean we actually need sleep, which we can never count on when Atti’s in the bed. This most recent trip I went down with Atti by myself while Bear stayed behind to work, so I had a big queen bed to myself and a snuggly little guy. It was heaven.

I snuck into bed after he had been asleep for a few hours and turned on the lamp so I could get in some hard-won reading time. In the lamplight I curled over to cuddle up to my boy, took one look at him slumbering there, and my heart snapped in half.

When he’s sleeping Atti looks so little to me. I can always see the baby still lingering around the edges. But with his mouth open wide enough for me to see the gaps in his teeth – gaps from his jaw and mouth getting too big for his little baby teeth – I felt that baby disappear forever.

Atti will be six this week. Six.

Every birthday has me feeling maudlin and sentimental, but this one is getting to be a bit much. He got his haircut and I cried. He wears jeans and t-shirts and looks like a big kid and I cry. He brings home school work and notes from his teacher and I cry. No mom is ever ‘ready’ for their baby to grow up, but right now? I’m taking it especially hard.

I think it’s the infertility. Each year that goes by without a sibling for him feels like I’m further and further out on that tail of statistical improbability. Each year older makes it harder, and less likely, that I’ll ever get to have another baby. I have to not only accept the fact that my baby is growing up, I have to try and face that this might be my only shot at motherhood.

Before I had Atti I always tried to hold a place in my heart for people suffering through secondary infertility, but it was always an exercise in radical empathy. Deep deep down, I really believed they didn’t have a right to ache like I did. They got to be a mom. They shouldn’t be greedy. But now I know so so so much better. For one thing, I know that pain is not relative, and anyone who tries to rank “appropriate” pain is just a jerk. But I also know what happens to your heart when you open it up enough to be a mom. I feel like this raw pulsing organ, running around with arms outstretched begging for someone to let me love them. I feel like I have no defenses. Like my vulnerability is wandering unsupervised through the world and I can never again pretend to be hard and closed off and impenetrable. My achilles heel is riding around on wheels and pushing his hair out of his eyes.

As hard as it was to not be a mom, and it was so so hard, it’s also, and a different kind of hard, to not get to be the kind of mom you want to be. Either way I had my coping devices. Pre-parenthood it was pursuing careers and education, taking advantage of my freedom, closing myself off to the world of babies and kids and putting all my attention on the adult world. Now it is wrapping myself up in my sweet little guy, getting kisses from him even if it means I have to trick him into playing a game where he gets to smash his face into my lips. I see now that there’s really no comparing the two. Being a mom of one doesn’t erase the pain of infertility, even as you enjoy every moment of it. Just like being independent and having opportunity doesn’t erase the pain of not having children, even as you enjoy every moment of that. It’s hard and it’s great. Full of silver linings and wonderful joys and also full of sorrow. It’s both at the same time.

No matter what the circumstances surrounding it are, it is always heartbreaking to want to love and not have an opportunity to give it.

I’ll be celebrating Atti’s birthday with him later this week, but today I’m grieving. Every bit of independence our kids achieve is us mom’s putting ourselves more and more out of a job. That’s tough for all of us. But it feels especially bitter and only a little sweet to me today. I love being a mom more than anything else. I want another chance.

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