Dayenu

With Easter approaching, and having just watched Prince of Egypt, I have been thinking about Passover--the celebration of the Exodus from Egypt.  As I have been working through my dark night of the soul  recently, I have been reminded that each of us has periods in our lives that feel like exile; when God does not seem to be present.

Less than three years ago, I was in a period of exile, angry at God and the world, struggling to understand my infertility, and wondering if and how I would ever have children.  God took me from exile by blessing me with Lil' Bit.  Frustratingly, exile returned as we coped with her medical condition and surgery, although we also felt many blessings during that time as well.  Blessings overflowed as she got better and we achieved pregnancy again.  Alas, exile returned with the loss of Oliver.  But, as I have mourned the loss of Oliver this last month, occasionally, I remembered to give thanks for Lil' Bit.  See, these last 16 months with her made it easy to forget that once I wasn't sure if I would ever have any children.

And so, as I struggle to reconcile my emotional need for additional children with the knowledge that, with Lil' Bit's needs, I don't know that I would be a good parent if I had more, I try to remember God's presence.  I remind myself that it is there, regardless of whether I can see it or feel it.  And, as frustrating as it is, I try to relinquish control; to let go and let God.  I try to let His will be done, whatever that is.  And I try to remember to give thanks for all that He has already done for me.

Which brings me back to Passover.  As I understand it (since it's not my tradition), at Passover, there is a song that is often sung called Dayenu, which means, roughly, it would have been enough.  Each of the stanzas of the song celebrate what God has done and are followed by "dayenu."  Any of these things would have been enough, but God did so much more.  And as I reflect, I realize that the same is true for me.  Which brings me to my own, personal, Dayenu:

It would have been enough...if He had brought me out of a bad marriage.

It would have been enough...if He had led me to Phil.

It would have been enough...if He had provided a full scholarship to law school.

It would have been enough...if He had led me to the job of my dreams.

It would have been enough...if He had granted me children.

And He did.  He granted me Lil' Bit.  And so, ultimately, if she is all I get, she is enough.  She is more than enough.  She is dayenu.

Frustrated Expectations and Tough Choices

So today we took Lil' Bit to the cardiologist for another echocardiogram.  Although her pressures were slightly elevated from earlier, it was generally the same--in December Dr. S got 42 and Dr. R got 48 and today Dr. S got 49.  Still better than the 60s she was at, but 20 is normal.  So, what does that mean?  I asked what purpose the meds served if the pressures weren't going down.  The answer was that they may be what's keeping her pressures at the level they are currently at.  So, instead of her having a heart cath this November and getting weaned off her meds, she's going to get a full-sedation echo this December and a heart cath next November when she's three.  That means we have to keep medicating her 6 times a day for at least the next 18 months.

The difficulty is that it's extremely hard to do anything when your child needs meds at 5, 6, 10, 2, 5 and 6, and it's extremely hard to find babysitters who you trust to medicate your child properly and timely.  It makes scheduling trips and just figuring out how to get in nap time and meal times really difficult.  Although we still plan to make our scheduled trips this year, it's going to take a lot more planning.

Don't get me wrong.  The fact that her pressures haven't increased is great news, and I'm lucky that there are meds that keep her healthy.  I just had thought the light at the end of the tunnel was this November and now it's been pushed out a year, with no guarantee that that's the end either.

And so, as I drove home today from the doctor's office, I asked myself several questions to which there are no easy answers.  We had attempted to schedule my pregnancy with Oliver so that I would be due after everything was done with Lil' Bit.  Now that the end won't come until almost 2014--if at all--are we willing to try having another child in the midst of all this craziness?  Can I take the risk of having another child knowing that, at least currently, I lack the capacity to cope if the next one also has medical issues?  How long do I have the patience and ability to wait while we try and figure out the answer to these questions?  The longer we wait, the older I get; the more we pay for embryo storage fees; the longer we make our child-raising years; and the longer we delay my hysterectomy.

I know that I don't have to (and shouldn't) make any decisions today.  But if I had to, I would say that I've hit my squeal point.  I think Lil' Bit will have to be enough.  I just don't have it in me right now to cope with pregnancy and Lil' Bit's meds and the lack of a guarantee on the health of any subsequent baby.  And that makes me even more sad.  Because I feel like I've lost everything all over again.  I am overwhelmed.  I am tired.  I feel like a complete failure.  I feel like I just can't catch a break and the world is dumping on me and I don't know why.  It sucks.  And all I can do, is just keep going.  Because really, at some point, I have to reach a tomorrow that is better.  I just hope it's sooner rather than later.

Birth Control

My apologies about the controversial nature of the following post, but I have reached the point where I can no longer stay silent on this topic.

Women's increased access to birth control has been in the news a lot recently.  Honestly, it never occurred to me that a mandate that insurance cover birth control would be so controversial.  Why?  Because it was always medically necessary for me.  Indeed, it still is.  As I previously mentioned:

Whether it was ruptured ovarian cysts, extremely severe Mittelschmerz, endometriosis, or excessively long and heavy periods, I have always felt at war with myself.  My cycles started when I was 9 and I was on birth control by age 16 to regulate my body and stop the cysts.

Flash forward to yesterday.  Yesterday, I ovulated.  (Honestly, before all this crap broke out in the media, I might have thought telling people that bit of information was TMI.  Now, it seems rather tame.  And, given how interested those in politics appear to be in what happens in my uterus every month, now they know.)

For most people, ovulation isn't a big deal.  There are women who pay big money for digital kits to tell them when it's about to happen.  Not me.  I just wait for the giant pain that feels like my appendix rupturing.  Yup.  Totally serious.  When my appendix ruptured in 1996, I didn't go to the hospital for 24 hours because I honestly thought it was my regular ovulation pain and only realized something was wrong when it didn't get better.  I dread every month wondering where I will be and what I will be doing when it hits me.  I keep heating pads and Aleve in my purse, my car, and my home so that I am likely to have them at a moment's notice when the pain starts.  And when it starts, it just hits.  There's no real build up.  I have roughly one minute to decide if this is about to be "it."  And Lord help me if I'm wrong.

So, back to yesterday.  As I sat on the sofa last night waiting for my husband to bring home my child, "it" began.  By the time Phil got home, I was curled up in a ball in the hallway, crying quietly so as not to freak out my daughter.  Phil fed Lil' Bit and gave her her first evening medication, but he had to leave to lead Wednesday night services and I was in no condition to take care of her.  Fortunately, my dear friend was nearby and came over to give Lil' Bit her meds, bathe her, and get her to bed while I lay on the couch waiting for the pain to stop.  We got lucky someone was available yesterday.  That won't always be the case.  And not knowing when and where I am when it hits is an even bigger problem now that I have to think about being able to take care of Lil' Bit.

And so it was that today, the infertile woman who cannot get pregnant from having sex went on birth control.  Why?  Because the way that birth control works is by making you NOT ovulate.  For me, it is a singularly magic pill that will make my life so much better and does what no other medication can.  But, because insurance is NOT required to pay for it, I have the privilege of paying roughly $50 a month so that I don't become incapacitated and feel like my appendix has ruptured.  Because it's OPTIONAL.  Because it's not medically necessary.  I call bullshit.  Insurance covered my accutane to get rid of my severe cystic acne and that was WAY more optional than birth control.  [Incidentally, it was while I was on accutane that insurance HAD to cover birth control--because it was medically mandated that I be on it given the severity of birth defects associated with pregnancy during accutane use.]

Furthermore, even assuming that every woman in the world used birth control only to prevent pregnancy and not to treat any other medical condition, it would SAVE insurance companies money because they wouldn't have to pay for all the medical costs involved with pregnancy and it would SAVE taxpayers money by having fewer women with unintentional pregnancies requiring welfare, medicaid, and other social safety nets.  And, quite honestly, if birth control were covered by insurance and more widely accessible, resulting in significantly fewer unintentional pregnancies, wouldn't that go a long way toward making abortion unnecessary?  I can't understand why on earth anti-abortion advocates aren't running around fighting harder for insurance companies to cover birth control!

But, back to my main point.  Birth control is prescription medication that treats multiple medical conditions.  Whether it is appropriate is a medical decision made between a patient and her physician.  Anyone who says otherwise is selling something.  And I'm not buying.

Sweating to the Movies

Today I went out to lunch with two of my good friends.  We used to all work together, but now that we all work different places, although we're all still downtown, we have a standing date for lunch together once a month.  Today's lunch was different for me, however, because in between our last lunch and this one, I had both gotten pregnant and then lost Oliver.  I had emailed them when I got the good news, and Facebook provided them with my grief, but I never got to share my brief joy with them personally.  We talked about many things and I managed not to cry when I answered their questions and told them what had happened.  And I had pie, which almost always makes me feel better.  As we were heading our separate ways, we talked about wanting to go on runs together and making plans to try and do a 5k together sometime.

Many moons ago when I lived in Texas, I would run/walk a 5k every weekend.  I did a few after I moved to Michigan and even managed to complete three half-marathons while I've been here.  But I haven't done anything like that recently.  Today I was reminded that running makes me feel better--this was even easier to remember given how beautiful the weather was.  Anyway, I was also aware that I had put on a fair amount of weight eating things like pie, biscuits, jellybeans, m&ms, and various other comfort foods to make myself feel better.  So, tonight I bit the bullet and got back on the treadmill.  I only walked 1.25 miles, but I also walked to and from lunch today which was about 1.5 miles round trip, so I totaled 2.75.  Go me!

Walking on the treadmill is not terribly interesting, however, so I use my portable DVD player to either watch movies or hook up my iPod for some tunes.  Because I had just swapped out my VHS copy for a DVD (I hear you snickering), I decided to watch Prince of Egypt.  I LOVE that movie; especially the music.  I haven't finished it yet (because I didn't walk long enough for that), but I did learn a few things during the parts I watched.

1)  The music is still amazing.
2)  Watching that movie as a parent is an entirely different experience.
3)  I cannot imagine having the strength or courage or living with the angst of placing my child in the river and leaving its existence to God.
4)  I totally get why a woman pulling a baby out of a basket in the water would want to keep it and raise it because I understand how you can love a baby from the moment you pick it up and never want to let it go.
5)  I cannot fathom the mental disconnect it takes for anyone, pharaoh or otherwise, to decide that killing children is okay because the children are slaves, or a different race, or the wrong gender.

I knew that being a parent would change my life, but I find myself discovering almost daily that there are so many more ways in which being a parent has reshaped or altered experiences that I thought would remain fixed.  What new lessons or experiences will I get from other pieces of the movie?  Only the shadow knows...  Well, okay, maybe not.  But, it does create an interesting incentive to keep on working that treadmill.  And, hey, there's the added bonus of getting back into shape in case we decide we want to try again.  Funny how that works.

A Grief Divided

There is an old saying that has come in many forms, but boils down to:  A joy shared is a joy multiplied; a grief shared is a grief divided.  I have come to understand this "proverb" a little better this week in two ways.

First, I found out that my blog has helped several people dealing with similar issues.  I was so pleased to hear this because that was one of the purposes of my blog.  Although the main purpose was to have a place to get my feelings out so that I could deal with them, opening the dialogue so that other women did not have to feel alone has always been part of this process.  So, even though my blog posts don't usually generate a hundred hits, the fact that it is helping someone is wonderful news to me.

On the flip side, I have been blessed and humbled to read blog posts by other women who experienced loss that, in retrospect, seems so much more difficult than what I faced.  I am amazed at their strength and grateful that they took the time to share their grief with the world because, just as my stories have helped others, their stories have helped me.  They are both women who had the courage and hope to try pregnancy again after having stillborn children.

Here are their stories:

Erica Crum - Remembering Kinley

Lucy - What I Never Knew I Wanted

One of the things I have struggled with as I consider whether I am willing to try again is, how do I not be anxious?  How do I experience joy when I know it can be gone in an instant?  At what point will it be "safe" to prepare for the child?

Recently, I heard another story about a baby born at 27 weeks to a couple who had undergone infertility treatments for several years.  The baby weighed less than 2 pounds and had severe medical issues.  All of these stories together made me realize something.  There's never a safe month.  Babies can miscarry, be stillborn, die shortly after birth, early in childhood, as teenagers, young adults, or adults.  They can die from medical problems, accidents, or other people's intentional bad acts.  There is nothing safe about trying to bring another life into the world and there is no point at which the loss does not hurt.  The trick is in finding the joy in each day, loving them as hard as you can, as much as you can, every moment you have them.  This truth was shown to me in the most recent post from Erica Crum in which she stated:

Today, I'm 29 weeks pregnant, the same day in pregnancy that Kinley was born. Every single day from now on is a day longer than I got to have with Kinley. Thank you Lord for the blessing of each and every day with her for years and years to come!!!!!

This, to me, is an amazing affirmation of living in the moment and taking joy in each day.  We never know how long we, or our children, will be in this world.  So let's all make sure we make the most of it.

Healing v Hiding

I thought I was doing a good job coping.  I really did.  As far as I could tell, I wasn't hiding from my feelings.  I cried.  I talked.  I cried more.  I thought a lot.  If you had asked me, I would have told you that I was doing great at this grief/healing thing.  Then came Tuesday.  I had a severe case of sads.  Bad enough I was willing to call it depression.  The "I'm crawling back under the comforter and not coming out until it's all over" kind of depression.  I didn't even want to eat ice cream to make myself feel better; that's way low for me.  So, I took the day off.  I let myself bow out.  Given that I am also recovering from severe bronchitis, I figured it was allowed.  And, by the end of the day, I was feeling pretty functional again.  So, imagine my surprise Wednesday morning when I found myself in that deep down funk again.  How was this possible?  I gave myself yesterday to cope and had gotten better.  This was not how things were supposed to go.  And yet, there I was.  Fighting for the energy to shower, get dressed, and go to work.  And again this morning.  The funk.  The lack of energy.  The wanting to bow out and let the world go on without me for a while.

And it occurred to me that maybe I hadn't been coping as well as I had thought.  As I thought about it, I realized that there are some good reasons for that.  First, my body is not yet done with the daily reminders.  I had my ultrasound today and although things look good generally, there is still some "fluff" (yes, that's the medical term the ultrasound tech used) and it's likely I will keep spotting until I have my next period.  Let me tell you--it's not fun being continuously reminded of a loss that is, for all intents and purposes, still ongoing.  And I realized that I was hiding at work.  I would get immersed in things and not have to think about my loss; my grief; my feelings.  I was superwoman and getting lots done at work, but I wasn't getting much done internally.  Turns out, my ability to function and perform well at work is unrelated to how well I am coping with the loss of my child.  Shocker!

Ironically, my discovery of my lack of dealing with things came when we received some good news.  We found out that, if we decide to try again, we have been given the financial resources to do so.  I honestly thought this news would make me feel better.  And yet, somehow, it plunged me further down into my hole.  I simply could not fathom why good news would make me feel so horrible.  But, as Phil and I discussed it, and I discovered that his experience had mirrored my own, we figured out what happened.  We had been focusing on the financial aspect of the decision whether to try again which kept us from dealing with the emotional aspects.  So, once the financial issue was off the table, there was nothing left to do but deal with the emotional baggage.  Hence, my funk.

So, I sat with things, thought about things, and tried to listen to the inner me--who often makes more sense than I give her credit for.  And I reached a few conclusions.  First, I'm taking May off the table.  It's too soon and requires too much planning for which I am not yet ready.  Plus, I don't think I will have processed my grief by then and I really don't want to start a hormone heavy regimen while still processing strong emotions.  As much as I hate waiting--as much as I didn't even want to wait until February this time around--I know that taking May off the table, thereby relieving lots of pressure on us, is the right decision.

I also discovered that one of the things that I needed to do to help me heal was to name my child.  This was difficult because we didn't know if it was a boy or a girl.  We talked about naming it something gender-neutral, but nothing seemed to fit.  Then, yesterday, I was talking with a good friend who went through a miscarriage at 12 weeks.  She told me that she had thought she was carrying a boy, so she gave it a boy's name.  As I thought on this and talked with Phil, I realized this made perfect sense.  While I was pregnant, I thought I was having a boy.  So, when I lost the child, what I lost was the visualization of my family with a little boy in it.  That made my loss little boy-shaped, so it only made sense that it should carry a little boy name.  And, to be perfectly honest, once we found out I was pregnant, since we had already picked out names, I had already been talking to the baby in my head by one particular name.  And so, after much discussion and thought, Phil and I agreed on the name for our angel baby--Oliver James.  Sometimes, I still find myself talking to Oliver.  Most often, I'm asking questions I know he can't answer.  But it comforts me.  It makes him real.  And, while it solidifies the loss, it also helps me heal.  Further, by giving him his own identity, I don't have to worry that I will try and treat any subsequent children we decide to have as replacements; they will get their own identity.  Still, I have no life experiences with loss that are the same as what I'm dealing with.  Don't get me wrong.  I have experienced loss, but nothing on this scale.  And that makes it hard for me.  I don't know what to expect.  I don't know how to behave.  How do I know what to do?  How will I know when I'm done?  There's no list of steps I can go through and wander out the other side and know I'm all better.  The planner in me is going ape over this.

And, in the midst of all this anger and frustration and funk, what I also realized was that I was not strong enough to do this on my own.  I was going to need help.  And not just people help (although that part is necessary and amazing).  And not just prayer help (although, again, wonderful and amazing stuff here).  No, I was going to need medical help.  And so it was that I sucked up my pride and took some Xanax.  I hate taking meds for anything.  It makes me feel like a failure.  But, knowing how helpful the Xanax was at taking the edge off so I could function during Lil' Bit's surgery and recovery, I knew it could help me get back to functionality after this loss.  And, slowly, I have started to emerge from the fog.  Not entirely and not as much as I would like.  I'm still feeling somewhat overwhelmed.  But, the Xanax has provided me with enough light that the fog isn't as thick anymore.

And so, I am thankful.  Thankful for the pharmacological miracle that is helping me get through this loss.  Thankful for all the friends who have helped me.  Thankful for all the women who have shared their stories with me.  Thankful for all of the people who have said the four right words:  "That sucks.  I'm sorry."  Thankful for all the prayers.  And, even though it doesn't feel like it right now, I know that, someday, I will be thankful to be on the other side of this.  Until then, thanks for walking through it with me.

Ordinary Time

Yesterday, we met with our fertility doctor.  He was sad on our behalf.  Apparently, he had not had any concerns.  His words were, "I really thought you had this one."  According to him, doubling rates over 48 hours in a healthy pregnancy run from roughly 65% to 130%, so my 80% was totally in the zone.  He advised that miscarriages that early are almost always from a chromosomal abnormality.  I asked whether we needed to test the other embryos and he said that testing actually damages them, so they don't do any testing.  He didn't think we needed to change anything and we still have plenty of "really good quality embryos left" if we want to try again.  I have to have an ultrasound next week to make sure there are no remaining "products of conception."  My bloodtest today showed an hCG level of 13.  I have to have another one next Friday, at which points they expect it will have finally returned to a number less than 5 (meaning negative for pregnancy).

In the event we decide to try again, the earliest we could do another procedure would be sometime in May, understanding that my body is setting the timetable.  We have to wait for my body to go through one complete cycle.  Assuming that happens in the next 28 days, we could then count forward 21 days into the subsequent cycle to begin taking shots to shut down my system.  After roughly two weeks of shots (I think it was 12 days last time), when another cycle starts, transfer would occur roughly 18 days thereafter.  So, assuming 28 days for the first cycle, then 21, then 12, then 18, we're talking mid-May.  If my body takes longer or shorter to get around to the first cycle, then early or late May.  But what all this calculating really means is that we have time.  Time to recover.  Time to think.  Time to reevaluate.  We have been given the opportunity to re-decide if this is what we really want--an opportunity people rarely receive.  I think it would be irresponsible if we didn't actually use it.

And so, after my ultrasound and blood test next week, I plan to enter ordinary time.  What is ordinary time?  In the liturgical calendar, there are seasons:  Lent, Easter, Pentecost, Advent, Christmas, Epiphany.  But between Pentecost and Advent, and between Epiphany and Ash Wednesday, the church has time to rest and relax.  It is not gearing up for any specific liturgical event.  These times are colloquially known as "ordinary" time.

So, as I try to figure out where I am, and Phil figures out where he is, and we figure out together where we are, I plan to enter ordinary time.  Time to recover from a big event.  Time when we are not planning for anything.  Time that I am not gearing up for the next thing.  Time to delight in Lil' Bit and all her new accomplishments.  Time to remember how much I love my job.  Time when I can just be and revel in my life as it is.  And, as I heal both physically and emotionally, we'll figure out what season of life comes next for us and being preparations for whatever that is.