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!

Healing

It was almost like an epiphany the way it hit me today.  Since D-Day I have struggled and wrestled with how and what to pray.  How do I pray for a situation that seems hopeless?  Asking for a miracle seems to vast…I don’t want a part way miracle.  If God is going to work a miracle, I want it completely!  I just haven’t felt comfortable praying for that from the beginning.  Don’t get me wrong, I know God can do it…I just never really felt like that is what I should be praying for.

Jonathan and I have also both struggled with praying this baby’s life away…by praying for a miscarriage.  It seems so harsh, and so selfish.  But thinking about the grief we would experience by losing Wiggles now, compared to losing him/her 6 months down the road just seems more bearable.  Again, this may sound harsh, but in many ways we have put our life on hold to take this journey that no matter how we look at it will end in grief.

So how do we pray??

Today, we took some visiting family to the Cooper Chapel…One of my favorite places.  As I was sitting thinking and praying about our situation and Wiggles the word “healing” came to mind.  It was almost like seeing a glimpse of blue sky on a cloudy, rainy day.

Heal = to make healthy, whole, or sound; restore to health; free from ailment (dictionary.com)

Ultimately, we want Wiggles to be whole, free from ailment.  We want his/her little brain to be complete! We want Wiggles to suffer as little as possible.  We want Wiggles to be healed!  Now, obviously, we would love healing here on this earth.  We want a baby to hold and love and raise.  But we know that healing on this earth may very well not be the plan God has for Wiggles, and in that case, we want God to give our Wiggles a flawless and perfect body in heaven.

We want healing for Wiggles…here with us or with Jesus.  Will you join us in praying for swift healing for Wiggles?  We want this healing to be swift for completely selfish reasons.  We want to avoid more pain.

This epiphany has finally given me direction in my conversations for God and I am so grateful for that!

Inside the Cooper Chapel, one of the most peaceful places I know of.

Inside the Cooper Chapel, one of the most peaceful places I know of.

Afraid to fall apart…

I’m afraid to fall apart…I don’t know how else to write it.  I haven’t been in the Word, haven’t really prayed, haven’t journaled, haven’t really worshiped since D-Day (Diagnosis Day) over two weeks ago now.  I can’t bring myself to do it.

I don’t know what to pray, my thoughts are like a big knotted up ball of yarn that I can’t seem to get straight with God.   I believe God can work a miracle, but honestly, I don’t believe that He will.  I can pray it…but what is prayer without belief and faith that He will do it?  I prayed so much before D-Day, prayer was constantly on my mind and lips.  I had hope then.  I don’t know what to hope for anymore.  The other day I caught myself saying “hopeful thinking” or “hoping for the best,”  and then I stopped, because it just doesn’t make much sense to do that when the end result is still saying hello and goodbye to my precious Wiggles possibly in the same breath.

I have found since the beginning of this journey two weeks ago, that it is so much easier for me to focus on how other people are handling the news than it is to focus on myself.  I want to help others with it…I guess that’s why my calling in life is to be a therapist.   But I also have realized that I want to focus on others because it is down-right scary to focus on myself.  I’m afraid of falling apart.  These past weeks I know without a doubt that it is the prayers of others and holding on to the promises of God that have been the only thing keeping my head above water.  I’m afraid to let God really speak to me, because I’m afraid I will sink and I won’t be able to swim.  I’m afraid I will drown is my sorrow and won’t recover.  I’m afraid the burden will really be too much for me to bear.  I have gotten so many comments about how my faith must be so strong and my trust in God is so admirable…I’m here to tell you that it may appear that way…but that isn’t the whole truth.

Yeah, I have been strong these last couple weeks.  I have gone days without crying about it.  I have continued to be successful at work.  I have had conversations about Wiggles that have not involved tears.  I have made some great memories with family.  But I honestly feel like it is just a matter of time before God’s going to make me weak…like really weak….like the only thing that will make me strong is ME falling on my face before Him.  Others can’t do that for me…others can pray, but they can’t make me strong the way God is going to have too.

And just on a side note…I’m not to the point where I am grateful to be Wiggles’ mom.  I saw a post on Facebook this morning about a situation similar to ours and the mom went on and on about how grateful she is be the mother of her child with a fatal diagnosis.  I’m not there yet…I don’t know if I will be.  Honestly, the times that I forget I’m pregnant are some of the best times still.  Like today, at work, talking with teachers and asking for client referrals.  I completely forgot about Wiggles….and then I feel like I need to feel guilty about this.  UGH!!  All these emotions and feelings are too much for this therapist to bear!

It was a good mail day today. Feeling very loved and very prayed for! Thanks friends and family!

It was a good mail day today. Feeling very loved and very prayed for! Thanks friends and family!

“Wait”

We had a general OB appointment this morning…and to be honest I have quit being hopeful about these kinds of appointments.  I haven’t had a “normal” pregnancy appointment ever, and I don’t expect that I ever will.   That being said, it seems weird that this appointment was probably as “normal” as it will get for me.

These last few days I have really tried to come to terms with the fact that this whole thing could be over before it really even starts.   The statistics of a live birth of my baby don’t look good.  In fact…

“It is estimated that HPE affects between 1 in 5,000-10,000 live births. Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies may be as high as 1 in 200-250. Current studies indicate that only 3% of all fetuses with HPE survive to delivery and the vast majority of these infants do not survive past the first six months of life.” – http://familiesforhope.org/what-is-hpe/

HPE = Holoprosencephaly

Those are depressing statistics…but then I think, what in the world do statistics mean to me?  I was the one who just a little over a year ago had a partial molar pregnancy. You probably don’t even know what that is…thats because they happen in less than 1 in 1,000 pregnancies.  So statistics haven’t worked in my favor yet…will they ever??

The appointment itself was uneventful today.  Our little Wiggles is still wiggling and has a strong 150bpm heart beat!  We had a good talk with the doctor about what things look like moving forward, and to sum it all up in one word… “wait.”  Wait and see how long this baby is going to remain here on earth.  Wait for what seems like an inevitable miscarriage.  Wait to see if we get to 20 weeks when more testing can be done and more plans can be made should pre-term labor happen.  And so that is just what we will do.  We also found out that the genetic blood test I took two weeks ago came back “inconclusive” because they didn’t have enough blood…GRRRR!  So I was poked again, something I am getting quite used to.

The doctor pushed terminating the pregnancy again…twice.  It took me being very firm and using hand motions to emphasize my point that that will NOT be happening!  We will fight for this baby’s life…because it is still a life that God has created!  And I honestly can’t even imagine making a conscious decision to just end things without giving God a full opportunity to do HIS thing.

So how am I doing today?  I’m frustrated.  I’m frustrated that we will wait and in the end the result will still not be what I want it to be.  I’m frustrated that I can’t DO anything to change or fix this situation.  I’m frustrated that the doctor thinks termination is a good idea.  I’m frustrated that the blood test I took two weeks ago came back “inconclusive” because there wasn’t enough blood.  I’m frustrated with God that He has chosen me for this assignment.  I feel like a teacher called on me to answer a question and my head was down trying not to make eye contact.  Don’t pick me Lord…I don’t know what I am doing!

Our Story

Hello, thanks for popping by! You may be here for a couple different reasons, but after reading I think you may realize that you have found yourself in the middle of a story that is being written even now. We welcome you to be a part of it, to take this journey with us and be a part of what God has planned for our little family. This is a place where you will experience through your reading, the life of our child, affectionately nicknamed…Wiggles.  You should also know that these updates will be real.  They will seem raw and harsh at times, because I can’t pull myself to write any other way.

You see, Wiggles’ first appearance was on a pregnancy test on May 30th. My husband, Jonathan, and I were bursting with both fear and excitement as we read what the test said and over the past 14 weeks those feelings have only become more real! Wiggle’s first 12 weeks were full of fun plans, lots of ice cream, pinterests searches, trying to eat healthy, drinking lots of water, constipation, some heart burn, and a gag reflex that made itself known very frequently. They were good weeks! I felt healthy although fearful of the mysteries of how this pregnancy would play out. The fear came from the fact that Wiggles already has a sibling hanging out with Jesus. And because of this little sibling, the doctor was keeping a close eye on us. We had our first ultrasound on June 8th, and we jumped at the chance to see Wiggles first hand! There was no heartbeat at this appointment, but we were assured that the next week at our second ultrasound we would see one. And we did!! We were relieved and excited that Wiggles really would be a reality!

Wiggles’ third photoshoot was on July 13th when we went for our first doctors appointment! It was at this appointment that Wiggles got the nickname! We saw him/her wiggling all over the place and joy abounded!! It was also at this appointment that something strange showed up on the brain. We were instructed to make an appointment with a perinatologist (high risk pregnancy doctor) to get more information. This news was scary, but we knew God is/was in control always!

After two longs weeks of waiting, on July 28th, we headed to Joplin, MO to see Wiggles again and get some answers about this strange thing on the brain. It wasn’t long after starting the ultrasound that it became very apparent that something was quite wrong…

We found out that day that Wiggles is a child with Holoproencephaly. This is a really severe birth defect that may be genetic or a developmental “accident” that happens in about the 5th or sixth week of pregnancy where the brain cells don’t split correctly and depending on severity, the frontal lobes don’t develop at all. So, there is severe cognitive brain damage and significant facial deformities. Our Wiggles most likely will not speak, walk, and only God knows if he/she will eat or breathe.

While at the doctor’s office, I had a blood test to begin genetic testing and hopefully get more answers. Those tests are still pending. There are still other tests that will need to be done, but Wiggles needs to grow more for those. Based on this appointment, all indications are that Wiggles has the most severe form of Holoproencephaly. The likelihood that Wiggles will survive pregnancy is very low, but he/she may do just that, just on brain stem activity. A live birth could last hours or years but never very many. This is all what the doctor said…

“Terminate the pregnancy” also were words out of the doctor’s mouth that were neither acknowledged nor given credit too. This is our child!! And we plan to let God make the decision on how his/her life will play out! And with this, we left…

Heartbroken doesn’t even begin to describe how we walked out of that office! Numbed, shocked, overwhelmed, exhausted, and utterly and completely broken!!  It has been about two weeks since the diagnosis day…it seems like 2 months!  We have shared the news with close friends and family, and although it would be nice if it got easier each time, it doesn’t.  There are still so many unknowns and so many questions both for God and for the doctors.

And so we wait…and while we wait, we live…at least we try to.  We get up each day, go to work, distract ourselves for as long as we can, and try and be grateful for one more day with Wiggles.