Thursday, July 16, 2015

Heart Lessons for Hard Things: Psalm 139

It seems appropriate to post this on the three year anniversary of Evie's diagnosis.  A heart lesson that continues to carry me through this journey with baby Kate as well.  A heart lesson straight from the heart of the Creator and Author of our life stories. 

For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

Psalm 139:13-16

The spring we found out we were pregnant with our second baby, four months before we learned of her fatal anomalies, I was helping to lead a Bible study for our youth group girls on redefining beauty as God sees it, not as the world sees it, and this passage was a topic of study for one of the chapters.  My heart took away two very important lessons from that study, lessons that have proved themselves time and time again in my journeys with my sweet baby girls.  

1. All of us, even in our brokenness, are fearfully and wonderfully made.
2. Each of us has a unique story that God wrote before time even began.

For you created my inmost being and knit me together in my mother's womb.  I will praise you for I am fearfully and wonderfully made.

I know what the world says about my girls.  It says their lives are not important and it would be ok to dispose of them.  "Terminate the pregnancy" they say.  Because if you aren't able to survive outside the womb how could your life be worth anything?  But I know what the Lord says.  He knit my girls together in a specific way.  He designed them just a little bit differently than most.  He pieced all their parts together ... let's see, we'll put a cute little nose there.  And a pair of perfect lips right there.  And precious kissable cheeks there.  And the kidneys ... they'll be special.  Ah.  Perfect.  

I take great comfort in the fact that God calls my girls beautiful.  Wonderful.  Worthy of adoration.  In a world that says otherwise, God Himself whispers into my maternal heart.  They're perfect just how I made them.  Beautiful girls, both of them.

All the days ordained for me were written in Your book before one of them came to be.

I see it like this.  A great Playwright is penning the greatest story of all time.  It spans millennia and involves every person who has ever lived.  Each person plays a special part, has a specific role and specific lines.  And, at some point, for some reason that only the Playwright can know (because He knows the end of the story, where it's all going to lead to, right?), He needed two small girls with lungs too small to keep them alive for long.  But they had (and have) their part.  And one played it perfectly, and the other will too.  

And somewhere in the story the Playwright needed another character.  A mommy who would cry tears upon tears for the girls and somehow show the world that love truly goes beyond the physical world.  He wrote this brokenness into the mommy's story for a specific reason too.  She's playing a very special role, even if she's not quite sure why or how to go about it.  But it's her story too.  

God's sovereignty is so evident in this passage of scripture.  It is that sovereignty that gives me so much comfort when life feels big and un-understandable and completely out of my control.  Someone is in control, and in control indeed.  And He says those broken pieces are beautiful and wonderful and He wrote them in there Himself.  No mistakes, no erasing.  Just beauty and wonder.  And perfection to the only One who knows what perfect really is. 

Thursday, July 9, 2015

To Speak or Not to Speak ... That is the Question

Elephant in the room.  Awkward silence.  Call it what you may but you know what I'm talking about - those times when the air hangs thick with conversation that should be, held back by hesitation and uncertainty.  And there are certainly circumstances that lend themselves to more of these experiences than others.  Carrying a baby with a fatal diagnosis to term, for example ...

People often express to me, and maybe even more often to my family members whom they feel more comfortable asking, that they want to ask how I'm doing but are afraid to make me sad or "remind" me (could I forget?) of my current life situation.  I always tell them to just ask, it's totally fine.  But I realized recently there is more to this short, simple answer.  

In truth, the answer is complicated.  Could you trigger my tears that day by asking me how things are going?  Possibly.  Could you make my thoughts jump from focusing on my current task to the impending sadness up ahead?  Maybe.  Could you stumble over your words and end up crying yourself?  Yeah, that might happen too.  But the problem with the opposite - the problem with silence - is that it can communicate a lack of caring.  And that hurts.  

Truthfully, there is no easy answer here.  "Remind" them and make them cry, or don't mention anything and make them wonder if you care or ever think about the gravity of their situation.  I don't know.  But as for me, I might err on the side of showing someone I care and ask rather than not.  And, as it has before, I might leave that conversation feeling like a big dummy and wish I hadn't opened my mouth at all.  In that instance though I just pray, Lord you knew my heart going into that conversation.  Please allow them to have seen it too.   

Suffering is hard.  There is no easy answer about how to go about it.  There may even be times when the above advice is horribly wrong.  But the Bible says we are to weep with those who weep.  And Scripture is also pretty clear about showing our love for one another.  And you never know what sort of need you are meeting or what bridge you are building by just being brave enough to speak.

Death and life are in the power of the tongue ... Proverbs 18:21

What do you think?  If you've been in a difficult life spot would you give the same advice?

Friday, June 26, 2015

The Not-So Bright Side

Do you remember Pollyanna?  It's a story about a little girl who turned a town upside down with her "glad game" - her positive thinking and looking on the bright-side in any situation.  Even the grumpiest of grumpies in that town took to liking the little girl and were changed for the better.  Kind of like Footloose but ... no dancing.

So, the glad game.  I think the glad game is what Scripture would call thinking on what is true, noble, just, pure, lovely, and of a good report (Philippians 4:8).  And let me be the first to stand up and say this sort of thinking is the only thing that brought me through my trial with Evie and the only thing that keeps me on track as I anticipate losing Kate - staying thankful and forcing my mind to focus on the good.  It's the very thing that keeps me from crossing over into really dark places.  It's crucial at times like this.  And I love Jesus down to the hemoglobules (that's a thing, right?) of my tiniest red blood cells and am thankful beyond thankful for His work on the cross and the promise of Heaven.  I believe it, I'm sold, my name is on the dotted line.  


But sometimes I get really tired of pretending like the good and positive side is all there is.  Because, even after all the thanks and positivity, there is still a very real situation in which I will, once again, have to live life without a much-loved and much-wanted daughter.  It will really happen and I will really have to walk that path.  For real.

They say the first step in overcoming addiction is admitting you have a problem (Hello, my name is (blank) and I'm an alcoholic).  It's out there in the open, no question, and then you can move forward with progress and healing.  I feel like the same concept holds true for grief.

As Christians I think we can be discouraged from admitting the whole entire hard truth about hard things in life.  I don't think this is the way to go about it.  I think we need to call it like it is.  And then we can move fully forward to accepting the painful circumstance as part of our life story and specifically pray about how to live with that piece of our heart damaged.  When people say things like, "well at least you still have _______", or even "you know God is still in control", it feels dismissive of the actual part of you that actually has to deal with that thing.  It hurts.  And I know in my heart that can't be the entire answer.

So I say, call it like it is.  Admit the real problem.  Allow yourself to acknowledge what one blogger called, the "profound suckness" of your situation.  I'll go first ...

Hi, my name is Sarah.  I lost my daughter before she even had a chance to come home from the hospital.  In a few months I will be doing it again.  I will never have the joy and privilege of seeing these girls grow up in my home and parenting them with all the love in my heart.  Those thoughts make me want to scream and punch a hole in something.  And throw up.

There it is, the real, hard truth.  And I'm not afraid to admit it because I know God is big enough to handle that.  His power can completely carry me through the hard road ahead.  But I think a crucial step is being 100% honest about what that hard road is and how hard it is.

Friend, if you're struggling today, I encourage you to admit exactly the hard thing you are facing.  Let your sorrow last for the night.  And then make the choice to embrace the joy that comes with the morning.

I have come to believe that both are very necessary.

Tuesday, June 2, 2015

When the Q's Have No A's

My brain's a little befuddled lately.  Kind of whirlwindy ... lots of thoughts stirring around.  The trouble is, there are no real conclusions to my thoughts.  I'm just trying to sort through my mind and heart and make sense of what's going on right now.  Again.  If you want you can join me on this hamster wheel of futility.  Except, I like to think of it as earnest prayers and ponderings I would like the Lord to shed some light on.  So, in that respect, not as futile as it might seem.  Here are some of my Q's that, as of yet and maybe even in this life, have yet to be paired with an A.

Were we foolish to not investigate Evie's condition further?  We thought we were making an informed decision based on the best thoughts/suggestions from a few different health care professionals.  Did we reach the wrong conclusion?

If we had known what caused Evie's death and if there was a 25% chance another baby could be affected, would we have tried for Jocelyn?  I certainly wouldn't want to not have her.  Who else might we be missing out on by being bound by that statistic?

If we do have a 25% chance of another baby being affected (we'll know more after baby Kate passes away), what should we do?  I believe in acting in faith.  I believe in not living life in fear.  But I also know God speaks through things like this.  Could He be speaking something over our family with that percentage?  Or are we meant to step out in faith and try again?  Would that be faith or foolishness?

Is this happening again because I didn't learn something the first time around?  Did I miss something?  If so then please, for the love of all things bright and beautiful, let me learn it this time!!  Please.

Am I processing this the right way?  Do I have the right perspective?  I feel very matter-of-fact about this old new hard thing.  I feel very, this is your assignment, soldier, about it all.  Sir, yes sir.  Is that bad?

Is it ok that I didn't feel too surprised?  That I don't cry as much?  That I'm not hanging onto the hope of a miracle like I was last time?  Is my heart in the wrong place?

Is it ok that I still plead for this cup to pass?  Because that would be great.  And I would love a miracle.

Lord, am I doing this right?

Lord please guide me on this path once again.  Speak wisdom and truth into my heart.  Let me not look back onto this time with regret for the way I've acted or things I've said.  Be glorified in this place.

Here she is ... sweet baby Kate.  Head, eyes, nose, hand in front of her mouth <3

Please share ... what's your favorite remedy for dealing with the Q's that lack A's?  

Saturday, May 30, 2015

Update from 5/29

So yesterday was my appointment with the specialists at Maternal-Fetal Medicine.  We had a very long ultrasound, consult with the doctor, and consult with the genetic counselor.  

The ultrasound did confirm almost all the findings from last Thursday.  Some details, like the cleft palate and clubbed feet, were difficult to see because of Kate's positioning (hands in front of her face and legs over her head).  Also, ultrasound needs fluid for proper image transmission and there is very little fluid around sweet baby.  So there may be some new things that are discovered over time or once she's born.  For now, we know for certain she has a splayed cerebellum, recessed chin (micrognathia), severe heart defects (pulmonary artery issues and something else I think that I can't remember), small lungs/chest (due to low amniotic fluid), and enlarged kidneys.  All of these, once again, add up to life incompatibility.

And, once again, both the doctor and genetic counselor are unable to pinpoint an exact diagnosis for baby Kate.  They threw around names like Meckel-Gruber syndrome, Dandy-Walker syndrome, and Polycistic Kidney Disease (again), but none of these encompass all the anomalies together.  Trisomies have been ruled out.  They do, however, believe that Evie's and Kate's conditions are related, the common thread being the kidney issues and heart issues, although Evie's heart issues manifested differently.  Anyway ...

After much discussion with the genetic counselor and straight up asking her what she would do in this situation, we've decided to wait until Kate is born and then obtain cord blood and placental samples, as well as an autopsy report.  These will hopefully give us the information we need to determine if Josh and I are autosomal recessive carriers of some random genetic mutation that has caused these issues.  If that is the case, we have a 25% chance each pregnancy that the baby will be affected.  That's a pretty staggering statistic.  So for now we wait.  But I'm praying we can obtain some information after Kate passes away to determine what we should do regarding future children.  It's pretty scary.  There is faith but there are also facts.  So we'll see.  

As far as placenta previa and birth plan - the placenta is covering my cervix, making the traditional baby exit strategy impossible.  As my pregnancy progresses we'll see if anything changes (sometimes the placenta can migrate to a better location as the uterus grows.  Unfortunately, my uterus won't grow too much due to the low fluid), and if not, I'm sure Kate's birth will be a scheduled c-section.  That's something I haven't even thought much about yet, but the prospect scares me a little.  It'll also be strange to know the day that Kate will be born and die.  But I guess we'll cross that bridge when we get there.

So right now we're just living life per usual.  Getting our house ready for the market, getting excited to break ground for our new place, Josh about to start a new job, loving our kids, loving warm summer weather and dinner on the grill and trips to the beach.  And this dark little cloud hanging over our heads and the promise of something dreadful to come.  I promise we're ok ... life just feels strange.

Please keep the prayers coming.  I'm battling my old enemy, listlessness.  I remember it all too well after Evie's diagnosis and death.  But there's a lot to do these days so I can't let it win.  

I have a couple pictures but, they're in my bag.  And my bag's over there.  And then I'd have to somehow digitalize them ... and then download them onto my computer.  That's a lot of steps (and see aforementioned note on listlessness).  So the pics will have to wait.  

Thank you again friends.  Marching on ... 

Saturday, May 23, 2015

Collecting and Clarifying My Thoughts

This blog was so vital to me during my trial with Evie - a place for me to clarify my thought processes and hear feedback and support from others.  Writing did that for me - made things more clear.  So that's what this post is about - putting down in one place all the thoughts I've been having since Thursday, even if just for my own sanity.

The truth is, I didn't feel too surprised with the news from Thursday.  Maybe I was braced for it and expecting it.  I don't know.  I feel like the news of Evie's diagnosis completely rocked my worldview.  I simply couldn't wrap my head around such horrifying news.  This time?  This time I know stuff like this happens.  Really crappy things happen to good, nice people who love Jesus and try really hard to live in a way that pleases Him.  And it doesn't mean they are being punished or made a bad choice or that God is somehow displeased with them.  It just happens in this terribly sin-filled world.  Babies die and beautiful couples can't conceive and romances are broken and hearts along with them.  And people have "things" - broken pieces and hurtful experiences that shape who they are.  I guess this is my "thing".

The first time I wondered how on earth anyone could survive a tragedy like this one.  I couldn't fathom living life with a piece of your heart missing.  But now I know how and that it is possible.  I know how to lean hard on Jesus.  I know we'll make it.  It's just a really yucky thing to endure again.

This time around I also feel like my heart is bursting with so much awesome around me.  Seeing the world through Micah's eyes and listening to his very well articulated thoughts and feelings about life - it's a hundred kinds of awesome.  And Jocelyn - oh my word.  I've never seen a happier or more full-of-life little girl.  And we're building, essentially, our dream house and Josh will soon be starting, essentially, his dream job.  The sad of losing another baby just doesn't seem to fit into my world right now.  I'm not sure what to do with the unbelievably wonderful and downright awful all at the same time.

What I do know ... this baby girl will go to Heaven just like her big sister.  She's not the same as Evie - a little more broken actually.  She has the same lung issues that were Evie's main cause of death.  But she also has heart issues, brain issues, clubbed feet, possibly a cleft palate, and possibly some other things that weren't able to be identified at our first ultrasound (still waiting on the specialist appointment).  There's also the added complication of placenta previa.  So even though we've been down this road before, this particular road has it's own set of unique attributes and unknowns.  Unknowns are scary.

I also know about all the awful things I have to look forward to.  Leaving the hospital with no baby being at the very top of that list.  I know I can survive all of it because of Jesus.  I just wish I didn't have to.

Things to pray for:

A miracle.  We can always hope.

An appointment to be scheduled with the specialist soon.

The placenta previa situation.  These typically end in c-sections, which we'd love to avoid.  They can also add other complications which would further complicate an already delicate situation.

Wisdom with how to answer Micah's questions and address his concerns.

The Lord impressed 1 Peter 4:12,13, and 19 in my heart the morning after we learned this news.  
Beloved, don't be surprised when you face fiery trials ... but do good as unto a faithful Creator.
I'm praying really hard that I can figure out what "good" I'm supposed to accomplish this time around.  Something new?  Something big?  Something seemingly small?  I guess we'll see.

My heart.  Anticipating having another infant daughter die in my arms is a lot more than I even want to think about right now.  I think I'm not really thinking about it, just for coping reasons.  But, if you ever had any doubts, it's kind of the worst.

Strength to live in this weirdness - where my life is full of so much joy and yet anticipating heavy sorrow all at the same time.  Strange is the only word I have for it.

And ... just being really real here ... pray that I won't look to food for comfort or happiness or an escape.  Especially if bedrest is potentially in my future, with the previa and all.

Also, not a prayer request, but saving the best for last ... we've decided on a name for our precious girl.  Baby Kate ... Katherine Zoe ... "pure life".   I love it and I love her and she has my heart.  Considering everything, I still can't wait to kiss her face.

Thank you friends.  You are Jesus to me <3

ps ... I'm sorry I don't have any pictures to share.  I don't have any from the 20 week ultrasound.  When I do get some I will share :)

Thursday, May 21, 2015

A Sweet Baby Girl

Today marked 20 weeks with Baby #4.  We found out that she's pink, just like her two big sisters before her.  Pink girly bundles are always sweet.

But we are sad to announce, like her oldest sister, she will be flying to Jesus much earlier than we'd ever anticipated.  Her collection of anomalies are similar to Evie's and yet different, the end result still being the same.

We've yet to have our official ultrasound with the high risk doctor, which will be much more definitive and hopefully diagnostic.  Until then we know what we know - this sweet baby girl won't be with us for long.

Friends we are in need of prayers once again.  The sustaining kind.  The guiding kind.  The strengthening kind.  We're ok - we know we can survive this.  It just really, really stinks that we have to again.

Please pray for a spot to open at the ever-busy high risk doctor so we can get more info on our sweetie.  Please pray for guidance for our future as this could potentially change the move we had planned.  This pregnancy also might pose some risk to me (placenta previa), so please pray that will stay under control and maybe even resolve itself.  And please pray that we can land on a beautiful, meaningful name for this precious baby girl.

Thank you.  And here we go again ...