Uncommon Julia

The Weight of it All

[Recap(s) about BlogHer '09 are forthcoming. Just letting my Jell-O set.]

Last night, Todd and I committed a cardinal sin: speaking of finances just before going to bed.  He mentioned that we were half a month behind on Mega Important Bill #1 and that Mega Important Bill #2 is due in less than a week.  We let out lots of deep sighs and tried to turn things over in our minds, examining them from every angle, looking for some solution or postponement, alternative, or break.

That is why I found myself awake at midnight when by all rights, I should have been dead to the world.  I lay there in bed and contemplated the precarious state of our family's welfare, examining the very knife's edge we live on every minute of every day.  And I felt the full weight of our financial misfortune pressing on me with relentless suffocation.

That is also why I was awake when at 12:01, Hannah cried out from a dream.  I went into her room to try and quiet her before she could wake Caroline (two awake is always, ALWAYS worse than one).  But to no avail.  I quieted Hannah and tucked her back in while Todd tended to Caroline.

As I passed the two of them on my way out the door, Caroline spied me, held out her arms and cried a quiet, "Mama!"  I took her from her daddy's arms and she immediately laid her head on my shoulder, her full body going limp and clingy, her silky hair smooth against my cheek, her breath falling instantly deeper, telling me she had fallen asleep in that wholly trusting way that small children do.

And it was then, standing in their shared nursery, watching the swaying shadow of my body and hers against the yellow wall, one child in bed and another heavy in my arms, that I felt the full weight of our family's great fortune.

May it ever be so.

Goodbye, Bear

Today sucked.  No other way to put it.

Bear began to deteriorate severely last night, the result, apparently, of a brain tumor or lesion, and not vestibular syndrome as we originally thought.  I found him crying on the floor, and carried him outside to go to the bathroom.  He was still able to do that, but only barely.  I fed him water by a dropper, and by morning he was unable to stand on his own at all.

All of this coincided with an all-night vomiting session for poor Hannah.  So this morning I found myself with a sick daughter, a sleep-deprived husband, a dying dog, and healthy toddler who didn't understand any of it.

I spoke with the vet a number of times by phone and by 10:00 we agreed that I should bring Bear in for a final exam.  If she felt it merited it, we would do more testing.  If she felt it would come to no good, we would put him down.

I explained the situation as best I could to Hannah - wishing with all my heart that I didn't have to take her through this first real brush with death while she was still covered in a pukey night shirt.  I explained that Bear had a boo-boo in his brain that we couldn't fix, and that he might have to go to Heaven.  I told her that if he did, he could play with her brothers and keep them company until we join them one day, years and years from now.  She cried, but managed to pet Bear, tell him she loved him, and said goodbye.

The vet confirmed what I really already knew.  This was progressive and at most, we would only be able to buy a week or so of time if we pursued aggressive treatment.

I took a little video of Bear, hugged him, stroked his beautiful fur, and thanked him for being such a wonderful dog and for looking out for our whole family.  At around 11:00, they put him to sleep.

Bear was alert and aware right up until I left him.  He was worried and freaked out, but calmed down while I said my goodbyes.  He even let out a final little groan, like he does when I pet his belly at home.  The vet said he was saying bye.

I know we did the right thing, but damn this sucks.  Bear was my first dog as a grown-up.  I bought him when Todd and I were first dating.  He was my constant companion during the sleepless hours of sobbing after each of my babies died.  He watched over the girls as only good shepherding dogs can.  He was wise from the age of six-weeks-old, beautiful, and sweet.

I will miss him.

Where Has All the Discourse Gone?

Lately I've been pondering a shift in our personal interactions.  By "ours", I mean, people at large - not here in my lovely microcosm of the interverse.  Actually, I think I may more specifically mean Americans, because I don't have any recent first-hand experiences in other countries to draw from.

The shift is about the distance that has developed, even amongst good friends, wherein we no longer discuss controversial issues.  Now, I'm from the South, and I do understand the holy trinity of taboo topics (money, religion, and politics) while in polite (read: unknown, and/or business-related) company.  But what I can't quite wrap my head around is our unwillingness to talk about truly important topics with our good friends and family.

If we can't talk about these things with our friends, then who?

Sadly, the answer is obvious: No one.

And do you know what happens when we stop talking about the important issues?  We become insular.  Static.  Inflexible.  We are no longer challenged.  We stop researching and asking questions.  We forget how to change our minds.  It becomes easier to believe that those who hold different views must be evil or "less than" because you don't realize your neighbors or church-friends or high school buddies are "those people".

From my perspective, it hasn't always been this way.  I vividly recall debates in junior high and high school about abortion, religion, war, voting age, drinking age, and a myriad of other topics that would cause today's administrators and teachers to blanch and hide under their desks while they awaited a firestorm of lawsuits to hail down upon them from every side.

But do you know what?  Those debates helped me form, rethink, reconsider, and reform my opinions.  And that's a skill that's fundamental to life as a successful, happy, functioning human being.

As an adult, I've been put in circumstances that have forced me to question my values, opinions, and even my silly, superficial assumptions.  Sometimes I change my mind.  Sometimes I become even more certain.

Of course, there are risks.  Firstly, you may make an ass of yourself.  You're bound to put your foot in your mouth at some point.  Secondly, you may make those close to you uncomfortable.  Scratch that.  You WILL make those close to you uncomfortable.  And they will return the favor.  But if you agree to approach these subjects by giving one another the benefit of the doubt, by truly trying to see the other's point of view, even if you disagree, much of the awkwardness and hurt feelings can be avoided.  Much.  Not all.

For someone like myself - who picks up on every little cue of discomfort and is easily shamed or embarrassed - these risks are very real and quite intimidating.  But I still believe they are worth it.

I began this post on the weekend, intending it to be an introduction to my first audio interview about a subject that is important, yet far too rarely discussed: race.  I had no idea that the consequences of becoming insular and closed-mouth would be so horrifically demonstrated as they were on Sunday when Dr. Tiller was murdered.

I am not claiming that his murderer could have been swayed by a nice chat with the doctor - insanity tends to interfere with honest, forthright discussion - but I do think that by embracing open discourse as a society, we can go a long, long way toward fostering understanding and striving for the common goals that unite the vast majority of us.

Most importantly, opening these channels is the best tool we have for undermining the polarizing, hate-filled philosophies of fundamentalists and extremists of all stripes.  It's the most effective way to shine light on the FACT that we have far more in common than not.  And it's the crucial step for healing the divisions that are leading to more and more violence across this country and the world.

For my first step into this sometimes-uncomfortable world of public (and recorded!) discourse, I agreed to be part of an ongoing series of audio interviews with an old high school friend.  The whole interview is about 30 minutes long, but it's broken down into parts, due to the constraints of YouTube.  My friend, OuttaBoundz, is a professor and self-proclaimed "hip-hop scholar" who speaks on history, hip-hop culture, and sociology.  His father was a history teacher of mine, and he's good people.  He and some like-minded friends have a blog called GhettoGEEKS, and he's hoping to develop these interviews into a whole online radio program.

This is the first time I've ever done anything on audio.  It may show. :)  I think the later two segments will be better, but who's to say.  Check it out, if you will, and let's all make a pact to start having the hard conversations with those who are important in our lives.  Maybe one day we'll be able to do the same with complete strangers.

Sometimes ...

... she catches me off guard.

Last night, as I was tucking Hannah in, I noticed her sweet little face twisting up into her about-to-cry expression.  I asked her what was wrong.  "I just miss my brothers," she answered.

"Oh sweetie, I know you do. But they're watching over you and looking down over all of us."

"I know you always say that, but I never see them."

I explained that maybe she could see them in her dreams.  And that maybe if we both prayed she would see them that very night.  So she asked me to say the prayer ("I'm really too little," she said) and I left the room - keeping it together by the sheerest of margins.

Though it seemed to come out of nowhere, I think her thoughts may have been prompted by the evening she'd just spent playing with two boy friends.  She must wonder, on some level, what it would be like to have her brothers here.

It's so easy and tempting to get all wound up in the "me" of grief.  Too easy to forget how the others around us suffer.

I'm glad I'm in a place where I can help her deal with moments like that, without burrowing back down into that place of despair.  And I'm glad that I could fall asleep saying the very same prayer, and looking forward to those moments when I do see them in my dreams.

Slipping Right Through My Fingers

A few nights ago, Hannah called out in her sleep.  It was around midnight, and she woke Caroline in the process.  Todd took Hannah and I took Caroline.  But by the time I gave Caroline a sip of water and put her back down, Hannah still hadn't calmed down.  So I took her in my arms and sat on the sofa and did the only thing that seems to work when she's in that state.  I held her close to me, like a baby, and rocked her back and forth and whispered, "Mama's here, mama's here," over and over.  I stroked her cheek and brushed errant curls off her forehead.  I hugged her and told her everything was alright.

It only took a few minutes before she calmed and maybe a minute more until I felt her go slack and begin snoring gently.  I watched her giraffe eyelashes flutter against her cheeks and counted the teeniest freckles on her nose.  And then I felt my body begin to protest from the awkward position and it suddenly dawned on me: I will not be able to carry her much longer. 

She isn't a baby anymore, and she certainly isn't a toddler.  She's a girl.  She's all leg and knees and elbows, and though I can certainly hold her on my lap and swing her around from time to time, it won't be all that long before picking her up and carrying her around just isn't a logistical option, save for an emergency and accompanying burst of adrenaline.

So I held her for quite a bit longer than was necessary.  And I took in all of those sweet, special characteristics that make her my Hannah.  Because for right now, I still can.  For now, she is still my sweet baby.  And futile as it may be, I want to hold on to that for as long as I can.  And then some.

"No, They Can't Take That Away from Me"

I don't know what 2009 will bring.  That seems so obvious that it's barely worth saying.  But I am hopeful.  Hopeful that there will be more stability for my family, more prosperity and recovery the world over, some measure of peace.

Last night we attended a New Year's Eve party that was purposefully child-friendly and relaxed.  We put Caroline down at her normal bedtime in a pack-n-play in a guest room.  But Hannah held her own and kept her eyelids determinedly open until after the ball dropped at midnight.  After a bit of sparkling grape juice, we packed up the kids and headed home.  They were both asleep after just a few minutes.

When we arrived home, Caroline, as is her tendency, woke when the car stopped.  Hannah, as is hers, did not.  I got Caroline settled in her crib and Todd left Hannah snoozing in her car seat while he carried in various bags and other items.  When I came back into the living room, he had retrieved Hannah and was carrying in.  She was outfitted in a pair of her new footie jammies, draped like a water-logged blanket over Todd's shoulders, and festooned with a hot-pink "Happy New Year!" tiara.  It was a gorgeous image and it made me sappy and smiley for the rest of the night.

Come what may, I've got a great husband and two phenomenal girls.  [Insert chorus here.]  So let's go, 2009, we're ready for 'ya.

"And That Has Made All the Difference"

Five years ago, for better or for worse, I began this blog.  I barely knew what the term "blog" meant, and certainly had no knowledge of the finer points of blogging.  Indeed, I doubt very much that there even were any "finer points" just yet.

But I was - how shall I put it - in a bad way (one needs only look back at my first entry - the bitterness practically leaps off the page) and the idea of a blog looked an awful lot like a dangling lifeline.  I'd spent the past month on a message board that was new to me, bearing the dubious title "TTC After Multiple Miscarriages".  I wasn't even certain I belonged because, as my OB at the time pointed out, I'd only had two regular miscarriages and three was the magic number.  Thankfully - or perhaps, fatefully - I stuck my toe in anyway.  There I met Ollie.  She was one of a small, elite group of women who had given up the saccharine "baby dust" and "cyber hugs" in favor of a harder, darker, more fact-based approach to infertility.  It felt infintely better than the other boards, and yet, dauntingly sad.

Ollie shared a link she'd found to one of these newfangled blogs one day, warning that it may be a bit "darker" than we might be accustomed to, but funnier than hell.  It was getupgrrl.  She had only begun her blog a month before, and I read each entry in about a half-hour.  It was spectacular.  She had the gumption to poke fun at some of the most horrific scenes associated with loss and infertility.  She dazzled me with entries like "Top Five Embarrassing Things You've Said to Your RE While Under Anesthesia".  Her wit was scathing and snort out your nose funny and she gave me permission to do the only thing left to do: laugh at the horror of it all.

From getupgrrl, it was only one small click to a little pregnant, which everyone recognizes at the gateway drug to the infertile blogosphere.  Within a week I had decided that I should start my own blog.  It was equal parts ego and desperation.  And apparently, that's just the mix my soon-to-develop audience was looking for.

The next five years brought more changes that I could foresee.  And this blog played a central role in much of those changes.

Life is truly and fundamentally different today than it was five years ago.  This blog was indeed a lifeline.  I feel much better in this skin.  I am, truth be told, an unabashed optimist.  Playing the cynic just doesn't suit me very well or for very long.  So, in the interest of continuing this saga (as everyone else has, I've toyed with the idea of stopping, but my ego intervenes), I think a good housecleaning is in order.  I'm going to work on a new design, update (Lord help me) my blogroll, get rid of the old reviews and other side items, update my "best reads", and maybe even figure out how to get my search tool back.

So, not a minute too soon, my New Year's Resolution is to blog better.  I'm not sure precisely what that will look like, but 2009 is sure to bring challenges and I'm going to need you all here to see me through them.

Thank you from the bottom of my egotistical little heart for five years of shared knowledge, grief, love, and cammeraderie. 

Some Measure of Peace

In the early morning hours of Thanksgiving Day, November 27th, I had a dream.  At the risk of sounding certifiable, it was more than a dream.  Much more.  It was a message.

I dreamed that I was a doctor, desperately trying to help a baby girl.  I don't remember exactly what was wrong with her, only that at some point in the dream it became apparent that she was going to die.  All my efforts were futile, and there was nothing I could do to save her.  It was out of my hands.  I hung my head over her little body, propped up on the gurney and began to cry.

Then she reached out and swept the hair away from my forehead in exactly the same gesture I use with Caroline and her unruly bangs.  Her hand brushed my cheek and then lifted my chin, bringing my gaze up to her.  She had an unwavering, wholly calm and wise gaze, as if all the universe were under her command and all knowledge at her fingertips.

And when she began to speak, it was not with words, but rather by filling my head with complete thoughts.  And I realized that it was Thomas speaking through her. 

He told me that everything was fine.  That he was fine - better than fine.  He told me that none of this was under my control and that he knew I did everything I could for him and all of my children.  He said there was nothing but love.  No recrimination, no guilt, no blame.  He said I could lay my burden down and be happy.  He said there was understanding all around me, and peace. 

I cannot tell you the full measure of the message because it was given to me all at once, and not in specific words.  But the actions of that baby girl - reversing roles and comforting me, holding my gaze and acting as a conduit for Thomas - it was an amazing gift.

Thomas then told me that he knew what day it was, and that it would be okay.  I would have peace.

I woke up filled with a calm that I have not felt for six long, long years.  For all of that time, as much as the logical me would be loathe to admit, my emotional self has carried around an enormous feeling of guilt and failure.  I have spent so much of my time and energy shadow boxing with opponents, both real and imagined, never fully acknowledging that I was really fighting against myself; against that feeling of failure.

I believe with complete certainty that my dream was not just a dream, but Thomas reaching out to me.  I think he has probably tried to do so many times in the past.  But I hadn't been ready to hear him.  The sense of inner calm and peace that I have felt ever since the dream is in such stark contrast to how I've felt every moment of every day since he died, that frankly, I'm impressed and saddened at how dark things were for me in retrospect. 

I took this whole holiday to hang out with my family, play with my kids, and almost wholly ignore work.  It was glorious.  I feel lighter and engaged in different way.  I feel like I don't have to put on a suit of armor just to walk out the front door or get on the internet.  And I don't feel like I have to justify myself to anyone - least of all, myself.

It is wonderful.

Thomas was born just past six o'clock on the morning, November 27th, 2002.  Looking back, he reached out to me at almost that exact time.  I know that this is no magic pill.  There will still be hard times and days when I feel less than perfect, to say the least.  But I feel I have an understanding that I lacked before.  Like the Sunday School song we used to sing, "the peace that passes understanding."  And it has healed my soul immeasurably.

Something to Hang My Hat On (Or, Somthing On Which to Hang My Hat... if you want to be a stickler)

This post has been brewing for months and months.  I'll start it today, but I wouldn't be at all surprised if it takes me a few days to complete. (Ahem... I wrote that sentence one month ago.)

For years now, ever since I spoke openly about Thomas, his arthrogryposis, and our decision to end his suffering, I've felt myself flailing and scrambling to explain that his case was no "ordinary" case - if such a thing even existed.  I have struggled to explain what our doctors were telling us - probably because much of the detail was lost in the flood of grief and shock that comes with such a diagnosis.  I was left with a clear "big picture", but no real way to tell others why we were so certain that Thomas would not have survived.

Every now and then, an adult living with the disease comments and tells me that I made a grave mistake because arthrogryposis is not a death sentence.  Some are gracious and attempt to be civil and understanding.  Others are not.  I can understand the motivation - not wanting others who may find this blog to misunderstand their own case or that of their child's - but nearly all make the mistake of equating their circumstances to ours.

Here's the bottom line: if you are LIVING with arthrogryposis, the severity of your disease is not the same as Thomas's was.

And now, I can explain why.  Scientifically.

A few months back, while following the searches that lead to my blog, I found this study.  My blog and this medical anthology are both listed when one searches "necessary termination for arthrogryposis".  Intrigued, I read the whole entry.  No such information was available online at the time we were making our decision.  And I wish it had been.  Because it would have been easier for my scientifically-inclined side to understand what the doctors were saying within a clinical context. 

But for those of you who have better things to do today than read through dense medical texts to learn about a disease that most likely will never touch you or those around you, here's the main thrust:

The text cites a study* of 15 infants with severe arthrogryposis, who also had markers that indicated they could not breathe on their own (decreased fetal movement, micrognathia, polyhydramnios, and thin ribs). Thomas was suffering from all three of these medical conditions.  In this study, 14 of the 15 were confirmed to have arthrogryposis (one case was a misdiagnosis, and ended up being a different kind of severe muscle disorder), and of those 14 every single baby died when life support was stopped at anywhere from a few hours after birth to a couple of months.

Every. single. baby.

That is what the doctors were telling us, and that is what I tried to convey in all of my other posts before this.  Thomas would not have been able to breathe on his own.  And our decision to end his life peacefully, without the bone-breaking** pain and suffering of a delivery; without the risk to my own body from carrying a baby that would never live and all of the medical complications that come with that; without the myriad of emotional damage that would have come from the congratulations of strangers at the sight of my belly; all that Todd and I went through was to save Thomas from that indignity.  And I will forever know in my heart and soul that we did the right thing.

And now I hope that those of you who come here in defense of those living with arthrogryposis will understand that your circumstances were not ours, and that our choice does not diminish your life in any way.

*Between the time I began this post and now, the PDF has been redacted.  The pages that cite the study are no longer available.  So these statistics are now from memory.  But the conditions that indicate an inability to breathe without support are still available.

**Thomas's body was too frail to withstand delivery.  His bone density was so low that birth would have very literally broken him.

Walking That Fine Line in CrazyLand

Julia at I Won't Fear Love has a great post (and blogiversary celebration) up about the conundrum people find themselves in when something tragic has happened in their lives.  She references the Pain Olympics, which you might remember if you were blogging in the infertility world back in the stone ages.  She outlines the concept just fine, so I'll wait while you read her post.

Done?  Okay.

I couldn't agree more.  In the years after the loss of all our boys, and particularly after Thomas's death, I constantly walked this fine line.  I wanted people to know and recognize that something had broken my entire world - something momentous and irrevocable.  I wanted them to know that I was hurting in ways that defied description and that I would never, ever be the same.  I did not want them to try and lessen my pain with any of the lifeless verbal band-aids and lame condolences we are so driven to awkwardly give one another in times of crises.

And yet, I loathed the idea that people were feeling sorry for me - that my story had turned from one of a good girl living a good life, to a sad girl trying to survive tragedy.  It did not mesh in any way with my self-concept.

What I finally arrived at was this:

I wanted pity, but I did not want to be pitiable.

Read that again, because it's an important distinction:  I wanted PITY, but I did not want to BE pitiable.

The only reaction from friends, family, or even strangers that I found acceptable was ABIDING.  To simply be there with me.  To tell me that this sucked more than they could conceive of and that they had no words.  To sit with me and not try at all to make it better or to lessen the pain I felt.  To give me hugs or fall silent on the phone.  To bring me carbohydrate laden food or send me tasteless e-mail jokes or take me to a movie and just hold my hand when I cried in the concession line as a pregnant woman walked past.

Whatever the grief, whatever the cause, I can't help but feel that mine was a common response:  I am sad.  I am stricken.  But that does not make me OF that pain, and it is not my state of BEING.

I don't know if that makes as much sense on paper as it does in my head, but I thought I should share - for those who have been there and for those who strive to be there for their friends or loved ones in times if crisis.