Things I’ve Learned About Grief

It has been two weeks since I held my little sleeping beauty. Two weeks since I saw her beautiful little body and kissed her sweet head.  Oh how I miss her!
It has been two weeks since I officially started the journey of grief, although it actually started about two months ago when we got the news about her holoprosencephaly.  During this time I have learned some things about grief that I never really knew before.  I am a therapist by trade, so I know what the textbooks say about grief, but actually experiencing this kind of grief personally is quite different.  Here are some things I have learned…
  • Being a therapist did not/does not exempt me from feeling all stages of grief over and over again.  I know the stages, I analyzed the stages, I examined how I was/am experiencing them.
  • Being a Christian did not/does not exempt me from experiencing all the stages of grief.  I think people think that as Christians we need to “get over it” quicker.  We need to “get back to normal.”  We can’t show our weaknesses.  Something about complete brokenness and vulnerability makes Christians uncomfortable (which is a topic for another day).  But that brokenness is exactly what grief is…and that is ok.
  • Some people have more grace than others for the healing process.  Some people tell you to take all the time you need and you can tell they mean it.  Others stress the importance of healing in a way that pressures those grieving.  There is a healthy balance I think…I’m hoping that I am finding that.
  • Just because you don’t cry as much in one environment doesn’t mean that grief is over and you can go about life “as normal.”  I stayed home last week and felt like I may have “conquered” my home life, besides triggers that can’t be avoided.  But going to church and back to work this week was a completely different animal.
  • Netflix is a great way to zone out and just rest from reality.
  • Something about mornings is really really hard.  Before I even crack my eyes open I have to pray because I know that when they do open my reality is still really hard to face.
  • Productivity and motivation are really hard, especially the first week or so after and it only gets gradually better from there. And really being able to focus was virtually impossible for a while, and is still something I struggle with minute by minute.
  • Losing a baby is different than losing another family member because pregnancy hormones make grief worse and more confusing.
  • Having people to cry and laugh with is wonderful.  And having people who understand that just because I am laughing doesn’t mean my grief is over is even better!
  • I spent a lot of time alone last week since Jonathan went back to work and I survived just fine but I did/do much better when I am around Jonathan.
  • Puppy therapy is a real thing, especially when empty arms are an issue and you have a puppy who likes cuddles.
  • God gives strength to the weak.
  • He is totally ok with crying and in fact catches every tear.
  • God is good!  Circumstances are hard and sorrow fills my heart…but so does God and one of these days I am confident that God will replace that deep sorrow with something a little more joyful, all the while taking care of my sweet baby.

Norah Maye Day

She was perfect.  Woven together so intricately.  So tiny.  So precious. So lovely.  Ten little fingers and ten little toes.  Two sweet little eyes and a button nose.  A sweet little mouth.  A chest where her heart once beat and little lungs and rib cage so small yet so obviously molded together with such love.  She was perfect.   Her arms and legs had elbows and knees and wrists and ankles.  Her fingers had tiny little finger nails and her eyes, precious little eye lids.  Her ears were so small, but still so present.  She was perfect.

God was there on Tuesday.  He was in that room with me and my people.  He was with me during each contraction and cramp.  He was with me during the tears, the pain, the heart break.  He was faithful yesterday and gave us unbelievable grace every step of the 11 hour process.

We arrived at the hospital a little after 5am and were greeted by my good friend, Alyssa, who would be our nurse for the beginning of the morning and would stick around to see us through the delivery.  The induction medicine was administered around 5:30 and the waiting began which was followed shortly by the pain.   Cramps and contractions were consistent eased only by pain meds which were administered only after my anxiety and fear got the best of me and uncontrollable body shakes couldn’t be stopped.   I feared and worried about the pain ahead, it all being over, the unknown of how and when labor would actually happen, and seeing my sweet daughter.  The pain medicine helped ease the pain and anxiety a great deal, that along with prayer and squeezing Jonathan’s or my mom’s hands through each birth pain.

My water broke around 2pm which only led to more cramping and more waiting.  In the 11th hour our Norah Maye was born.  Safely, simply, in an unexpected moment, and without pain her physical body entered this world with the help of Alyssa and our other nurse, Leslie.  The cord was cut and Norah was moved to the scale to be cleaned while I finished the labor process.  So much grace.  With a 15 minutes delivery process she was born at 4:15pm on September 15, 2015.

The following moments were so precious and so perfect.  IMG_2757Jonathan and I knew without any doubt that although we held her in our hands physically, she was being held so much tighter in the hands of her wonderful Savior and Creator.   We gazed upon her in her beautiful perfection and were in wonder and awe of our Jesus.  We had time alone with her and shared memories with her, how God has used her in our lives and in the lives of so many others.  Jonathan said it all too well…

“I can’t help but be in awe of how she literally embodies 2 Corinthians 12:9…”But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.” Norah is weak by every human measure and yet, in the Lord’s hands, she was used to work in many lives and in many ways that continually surprised Meghan and I. All human life has purpose, even in its most feeble form. He is good, she is perfect, and they are together. Praise the Lord!”

IMG_0004I kissed my sweet daughter on her hands, her feet, and her little button nose.  She was so fragile and so sweet.  I cried tears of sorrow, pain, joy and relief.  So many emotions that all seemed normal.  We kept her for a while, held her and took in all we could of her lovely little body and then it just seemed right to let her go.  We knew she wasn’t really with us anyway, we have sweet pictures of her to remember her here on earth, we kissed her, loved her, prayed over her, and we let her go.

Norah Maye has only known love and what a pleasure it was to provide her that love here on earth.  And now Jonathan and I make the choice to live each day here on earth with each other and for our Lord while waiting with anticipation to love on our babies when God calls us home.

Oh to be in the arms of Jesus…

Oh my fellow travelers, it is with both complete sorrow and just the slightest bit of joy that I inform you that our Norah Maye is perfectly healed and safe in the arms of Jesus.

After what was a much shorter than anticipated ultrasound this morning, our doctor confirmed that Norah passed within the last few days.  We could tell something was wrong this morning when the ultrasound tech didn’t spend much time taking pictures and very quickly checked for a heartbeat.  She was in and out much to swiftly and as we waited about 20 minutes for the doctor to confirm what we knew was very likely, my emotions were all over the place…They still are.

At first Jonathan and I didn’t talk about what we were both thinking until I said, “It looks like she has grown…she just wasn’t wiggling much at all.”  Jonathan agreed and eventually said, “I think God answered our prayer.  He healed her.”  And tears streamed down my face.

For what seemed like an eternity I thought about and tried to process the likelihood of losing her and at the same time tried to have hope that it wasn’t true.   I wasn’t expecting to hear that we had lost her today so I tried to wrap my head around continuing the journey that looked grim, just based on what we did see of her little head.  I tried to imagine life without her all the while thinking about maybe getting to keep her.  And as we kept waiting, the reality seemed to sink in more.

The doctor was compassionate, which was an answer to prayer.  He was matter of fact but explained to us very gently what he saw and what the next few days may look like.  He told us that she is small and explained her diagnosis more before confirming that she was in fact no longer with us.  Up until this appointment I have been able to keep tears at bay until we got to the car, but they fell freely for me (and the ultrasound tech) this morning as the doctor continued to move the ultrasound wand trying to get a good angle of Norah for a picture that I requested.

And then we left…and we prepare for what is next.  Tomorrow morning at 5am we will head to the hospital and I will be induced.  I’m not completely sure how tomorrow will play out.  All I know is that I was scared for our appointment today and I am all the more scared about tomorrow and what will be required of me.

We continue to appreciate all the prayers we can get.  More specific prayer requests include:

  • A good nights rest so Jonathan and I have energy for what could be a very long day tomorrow.
  • Safe travel for my parents making their way here from Rapid City, SD to be here in time for the appointment in the morning.
  • Peace and calm during the induction and labor process.
  • For a special time when we get to hold and see her.
  • And for all the unknowns that I don’t even know need to be prayed for.

And already we wait with great anticipation for when we can join our Norah Maye and our first sweet Little One in the arms of Jesus.

The Norah Journey

I almost feel like I should begin this post with “Hello fellow travelers!” It is days like today when I feel like we are all squeezed onto a VW van and taking a journey to a destination only known by our driver.  I feel surrounded by support, encouragement, and prayers.  I am confident that I am not alone in a reality that seems so daunting and overwhelming.

On other days, like this past Monday, I still knew I was supported but it seemed as though everyone else chose to get off the van and it was just me and the driver traveling.  I felt alone.  It was only me sitting there crying and talking to the van driver about how exhausted I am from traveling on this journey that seems to never end the same journey that I don’t want to ever end.  This journey with Norah is lonely sometimes, even in the midst of the support.  I told Jonathan on Monday, “I want this all to be over…but I want it to end with Norah in my arms.”

I guess that is all to say, I need/feel/depend/appreciate every once of support and prayers that are offered on our behalf.  I don’t take any of them for granted, especially on days like today!  Lets load up that van and see where God is going to take us on this Norah journey!

VW-T1b-Bus-Normalausführung-Fr

We had a doctor appointment today and our little Norah Maye is still with us! We heard her quickly beating heart (140bpm) this morning and are praising God for her little life!

We also found out that we are still in the midst of a wait and see season.  Our appointment on Monday (Sept 14) will hopefully give us a better idea about what we are facing.  The Monday appointment will consist of an ultrasound where we will see the brain as well as any physical abnormalities she may have.  And we will have the amniocentesis which will give us definitive genetic results.

The waiting is almost unbearable! As time moves on we grow more and more attached to her and we pray so hard that God will glorify Himself through complete healing of Norah’s brain.  We know He can do it!

I am scared by it all right now. I’m scared that God will decide not to heal her.  I’m scared that the diagnosis will be worse than we thought and that the physical abnormalities will be too shocking to even look at.  I’m scared that it will be painfully obvious that we won’t be able to keep her.  I’m scared that I won’t be strong enough to handle the news and will fall apart in the doctor office.    I’m scared, but God is not and He is the one in control.  And so we will trust in His plan even when trusting in His perfect plan is so painful in the moment.

You promise instead….

I haven’t a doubt that God is on this journey with me…As I was praying/journaling the other day He was teaching me a valuable lesson that I still have yet to fully grasp.  Below is an excerpt from my journal…

September 5, 2015: As the appointments on the 9th and 14th get closer I find myself getting more anxious and wanting to cherish each moment with Norah all the more.  I’m afraid to let her go!  She has been with me almost 18 weeks already and I find myself wondering how I will move on if I have to say goodbye.  My heart hurts just thinking about it.  Lord, I pray so often for you to form her brain.  Maybe you are just taking extra time on it to make it all the more special.  That is what I tell myself just for some comfort in this wait.  I absolutely believe you can work a miracle.  I would be the woman in the crowd who would touch your cloak just for a chance at healing (Luke 8:43-48).  I believe you can do this.  I believe and yet I don’t want to get my hopes up, so the minute I think you will I bring myself back down to reality and the possibility that you won’t.  As I read to Norah this morning about the promise you gave Sarah and Abraham, I find myself jealous of the promise (Genesis 18).  I so wish that your promise to me was that we could keep Norah here with us and healthy, yet you haven’t promised us that at all.  You promise instead..

  • You have plans for me…for my good (Jeremiah 29:11)
  • You will give me rest (Matthew 11:28-29)
  • You give me strength when I am weak (Isaiah 40:29-31)
  • You take care of me and will supply my needs (Philippians 4:19)
  • Nothing can separate me from Your love (Romans 8:37-39)
  • You give me peace (Proverbs 1:33)
  • You save me from our sin (Romans 10:9)
  • You give me eternal life (Romans 6:23)

Where in this list is a promise to keep Norah?  It isn’t there, yet I realize there is a lot there for me.  Lord, help me to lean on the promises you DO have of me, even when I feel like they don’t supply me with all I need,  because I need my baby…I feel I need my Norah.

Teach me to be resigned to thy will, to delight in thy law, to have no will but thine, to believe that everything thou doest is for my good.

Help me to leave my concerns in they hands, for thou has power over evil, and bringest from it an infinite progression of good, until they purposes are fulfilled…

…May I not instruct thee in my troubles, but glorify thee in my trials; Grant me a distinct advance in the divine life; May I reach a higher platform, leave the mists of doubt and fear in the valley, and climb to the hill-tops of eternal security in Christ by simply believing he cannot lie, or turn from his purpose.

Give me the confidence I ought to have in him who is worthy to be praised, and who is blessed for evermore.

– The Valley of Vision: A Collection of Puritan Prayers & Devotions (Arthur Bennet)

Being Brave

This week has been harder than the last.  I’m not sure why that is.  I have had at least three nights when tears came and didn’t go till I was sound asleep.  Sometimes fear caused tears…sometimes anger…sometimes hopeless love for my daughter.  Lately it has come between 9:30 and 10:15. I know I’m tired then, which is probably a trigger all in itself.  Whatever the case, sometimes the tears come and can’t be contained.   I think fear is the emotion that tends to grab ahold of me most frequently.

Since the beginning of this pregnancy and especially now I have realized just how much courage is required to carry a child…and then how much courage is needed to carry a child with a fatal diagnosis.  Having one baby already in heaven made me fearful from the beginning of this pregnancy.  The fear was overwhelming, I think mainly because I haven’t had a “normal” pregnancy experience to gain confidence from.  I remember praying “Lord, can we keep him please!” Like a child would ask a father to keep a puppy.  Since the beginning, joy had been an emotion that I have to fight for…yet I can be overcome by anxiety and fear effortlessly.
Early on this song became my anthem.  I would drive home from choir practice on Wednesdays and sing at the top of my lungs with tears streaming down my face.  Lately I can’t even sing it because tears flow freely.  It is the reminder, the prayer, the promise that gets me every time.
I think in the midst of this, I just need the reminder that He isn’t my enemy.  He isn’t out to get me.  He has a plan and purpose for this journey that is better than my own…even if it really doesn’t seem that way.  It seems more like I am traveling along sometimes, like I am out in the craziness of the waves by myself.  But He has pulled me out into the waves, and His grace meets me there, and His love crashes over me wave after wave.
“YOU MAKE ME BRAVE! You call me out beyond the shore into the waves.” I can’t do this without Him…without His strength.  I couldn’t live each day and get out of bed to do what He has set before me if He didn’t lay the path for me to walk and surround it with the strength and courage I need.   I have never thought of myself as a brave person…I worry too much.  But living each day of this journey, I have no other choice but to be brave.

What’s in a name?

Our little Norah Maye started out as…baby…then Wiggles…now Norah.   What is it about a name that makes this little life more real?  At the beginning of the pregnancy we struggled with pronouns…he/she/it.  We didn’t really know how to refer to her.  Although, both Jonathan and I felt sure that she was a he.

We went to our 7 week appointment, the appointment that we found out that something in her head looked wrong, and we saw her wiggle.  Me, being a pessimist and always…I mean, ALWAYS finding something to worry about, focused on the “something wrong.”  Not Jonathan, he saw our baby wiggle for the first time…he saw a miracle.  We got in the car after the appointment and I cry….and he smiles and says, “It’s wiggling honey, he doesn’t know anything is wrong!”  He focused on the fact that there was still a heartbeat.  There was still life.  There was a wiggle. It was on this car drive home that our baby became, “Wiggles.”

It wasn’t until this week that we were challenged to name our daughter.  We had a name for a baby boy, but we had nothing for this precious daughter of ours.  And the list began… So what IS in a name???

A meaning, a reminder, a tradition, a title…

We don’t want this name to just be one we like the sound of, we want it to mean something.  We want her name to be strong…but lovely.  We picked out a name and marinated on it for a day and decided that it just seemed too sweet.  Jonathan described it as a jolly rancher…we just aren’t jolly rancher sweet kind of people.  We thought of names that meant “innocent,” and “pure,” and “God is my strength.”  We just didn’t like any of the options we found.  Then we happened upon the name Norah.  It is a strong name that seems to fit our family.  Norah means “light.”  And we are reminded of several scripture..

The Light shines in the darkness, and the darkness did not comprehend it. John 5:1

Then Jesus again spoke to them, saying, “I am the Light of the world; he who follows Me will not walk in the darkness, but will have the Light of life.” John 8:12

I have come as Light into the world, so that everyone who believes in Me will not remain in darkness. John 12:46

“You are the light of the world. A city set on a hill cannot be hidden; Matthew 5:14

I guess I just like the fact that even in what seems to be such a dark situation, God is our light.  His light shines in the darkness and makes our journey one of hope, purpose, and love.

I also like Norah because she is a little light to us.  Yes, we have sorrow and dreary times but her life is one of purpose, goodness, and light despite that fact.

Light: (noun) something that makes things visible or affords illumination:

And I guess I can’t help but think that our precious Norah’s life is bringing to light things about myself, that I would never have known. For instance, I never thought I was strong enough handle a journey this hard…I’m not.  But God is showing Himself very very strong through my great weakness.

Complete Dread!

I can be fine…even joyful one minute, then in a mess of tears the next.  People say that is normal when going through something so “hard.”  But it stinks!  It stinks…A LOT!

I had a good day today. I made it through church with tears only during worship.  (Singing is a very emotional thing for me and it seems every song is speaking to me and our Wiggles journey.)  The afternoon was just fine, I had some good reading time, reading the book “Turn My Mourning into Dancing” by Henri Nouwen and journaling.  I took a much needed nap.  It was just good…peaceful.

Then all of a sudden, complete and utter dread overwhelms my mind and heart.  It is a weight almost too heavy to bear.  The next weeks and months hold the anticipation and dread of what could be the hardest and most painful day in my life.  I remember so vividly the heart pain after losing Little One (our first child who is with Jesus).  My heart/chest hurt with such deep pain…I remember it like it was yesterday.  And now I dread a pain that has the potential to be exponentially worse that what I have all ready experience from losing a child.

I hate that this has to happen to me.  I hate that God chose us for this journey.  I hate that yes people will be impacted by this…but it is at such a great cost to me and my family.  I hate that if God isn’t going to physically heal Wiggles, he won’t be able to help me avoid the pain that I feel and will feel more and more as days go on.  I hate that as each day goes by I get one day closer to giving my baby to Jesus.  I hate that I don’t get to decorate a nursery, buy cute baby clothes, and do many other things expectant moms do to prepare to bring a baby home.  I hate that instead I am thinking about how I will remember this baby forever and grieve with empty arms.  I hate this!  Oh, how I want this cup to pass from me!

And the cup he brings, though it burn your lips, has been fashioned of the clay which the Potter has moistened with His own sacred tears. – Kahlil Gibran

Attachment

In the beginning, there was nothing.

Nothing to hear.  Nothing to feel. Nothing to see.

Only emptiness.  And darkness.  And…nothing but nothing.

But God was there.  And God had a wonderful Plan.

“I’ll take this emptiness,” God said, “and I’ll fill it up!  Out of the darkness, I’m going to make light!  And out of nothing, I’m going to make…EVERYTHING!”

(The Jesus Storybook Bible: Every story whispers his name, by Sally Lloyd-Jones)

A1iNqHXNZULIs it weird that reading this I think of my womb? I think of the nothing that was there and how God create something…He create Wiggles.   He has a plan…He filled my womb…Wiggles’ heart started beating spontaneously because He decided it should.

We got a Bible for Wiggles this week.  We read to Wiggles for the first time last night.  It was both the best and the hardest thing I have done so far in this pregnancy.  Attachment to Wiggles…well really to anything you know you will have to say goodbye to is so hard, but so necessary.  The last thing I want to feel when this is all over is regret that I didn’t love this child with everything I had.  And because this attachment process is so painful, it has to be all the more intentional for me I think.   I want Wiggles to know that he/she has always been loved and wanted and I want nothing more than for Wiggles to experience only goodness and love in the life that he/she has.

I got a note from a good friend of mine after she heard the news of Wiggles.  She is a labor and delivery nurse at the hospital that we will be going to when the time comes.  She is the biggest blessing to me and has eased so many fears and given so much comfort.  Her perspective is beautiful and something I will hold onto…possibly forever. She wrote this…

I know this sounds crazy and heartless, but there is always a small sense of joy for a baby that has passed. Since conception, it has never felt anything but warmth and love from its mother. It has lived in the calming motion of the mothers day to day activities and listened to her heartbeat and voice. It has been peaceful bliss since day one. I believe that when babies are still in the womb, that they are still connected to Heaven in a way and can enjoy God’s comfort during that time. It has never had to feel the harshness of the world in any way. And when the baby does pass away, God is there, and has been there, waiting to take him or her up to Heaven where it is absolutely perfect. Never will the baby have to experience anything but love and perfection with God. Can you imagine? Whenever this happens, as crazy as it sounds, I always feel Gods presence in the room. Although it breaks us on earth, that is such a beautiful thing. If Wiggles gets to meet the world, I know that he/she will be so blessed to have your guiding hand. Two people couldn’t be more amazing to take care of a special needs child! I can tell you that I know 100% that God didn’t make a mistake giving Wiggles to you. Wiggles is so utterly and completely loved by the best parents that he/she could ask for! Know that you are doing the work of God and I am so proud of you!

And now that tears are rolling down my face and the snot is getting a little out of control, I will go about my Saturday as a mother carrying a miracle and creation of God.

 

Not Just a Distraction…

The house has been quiet this week…sooooo quiet.  The last three weeks we have been completely blessed by our family.  On D-day my parents just happened to be coming down for two weeks with us.  And then after they left, my mother-in-law came to spend a week with us.  And when she flew home, Grandma and Grandpa Lukaschek joined us for a weekend.  What a blessing!

Parents in town!

Parents in town!

Let me just tell you, those first weeks were hard, but the presence of family really helped to soften the blow of the news!  We had people to process with, to talk through plans and worries and fears, to cry with.  We had people to distract us at times from the reality of our life. But more than that, we had people to be joyful with, to create good memories with, to smile through the tears with, to laugh with.

When we had told our family about Wiggles we often got the question, “How can we help?”  And almost without hesitation I said, “You can come hang out with us.”

Mother-in-law in town!

Mother-in-law in town!

And when I said this, it wasn’t just because I want/ed company, it was because I want people to experience life with Wiggles.  I want Wiggles to be around our friends and family.  I want pictures with family…with Wiggles.  And I want these months, which could so easily be filled with sorrow and grief to also be full of joy, good memories, laughter, family, community, and fellowship.  I want Wiggles to know…as much as possible…just how loved he/she is.

Grandparents in town!

Grandparents in town!

I so wish we could travel to others…to give Wiggles some awesome experiences away from home.  But we just can’t.  The risk of leaving home and miscarriage or pre-term labor happening is just to high. So we will stay put and host company…We already have a few more visitors and fun events on the calendar!

So, yes, the house has been quiet this week. And yes, it has been hard at times.  But it has also been refreshing.  I have started listening to worship music again, it brought me to tears at first but has gotten so much easier and necessary.  I have taken quiet walks with just me, Langlee, and Wiggles.  I have prayed more. I have given great thought to how to attach to Wiggles in a way that is meaningful, which has given me renewed perspective on this pregnancy experience.  I had a great talk with a great friend that was so good for my soul.  I have worked.  I have snuggled with my husband and I am anxiously anticipating a Friday date night!  …All this and it is only Wednesday!

God is good…and I am thankful for days when I can really see and feel how true that is!