Wednesday, December 25, 2013

Hope

Merry Christmas! I hope all who are reading this- are enjoying a blessed and full day with family, friends, tradition and celebration.  I LOVE Christmas.  We are so blessed to have our Wiens' family here this year. We have been enjoying too many Christmas goodies, some good Christmas movies, a birthday party for Jesus, a few (okay- maybe more than a few) exciting gifts and some great family hangout time.

 How exciting it is to celebrate our Saviour's birth today!  What hope we have in Him. At last night's Christmas eve service- our pastor talked about Hope.  He differentiated wishing and hoping.  Highlighting wishing as something that we project into our future-- we wish for certain things that we often have control over attaining or creating for ourselves -- or that we think best suits us.  He highlighted hope as something that we have in Christ -- hope is something that is in our future because we know that God is in our future, He knows our future and overall-- HE IS GOOD.  The passage we focused on is found in Hebrews 6:18-19--

"God has given... His promise... therefore, we who have fled to Him for refuge can have great confidence as we hold to the hope that lies before us.  This hope is a strong and trustworthy anchor for our souls."

I love this picture of our hope in Him being our anchor.  As we face our current storm- He is truly our anchor.  I am so thankful I am not simply adrift in these stormy seas.

Yesterday- God blessed us with a precious Christmas gift.  Though Samuel's prognosis remains the same-- we had an uplifting Doctor's appointment.  We are currently 32 weeks.  Measuring at 31 weeks.  Samuel had a strong, snapping (- which is a good thing) heartbeat-- at 148 to 150 bpm.  His movements have increased in the last 3-4 days and we have been enjoying celebrating him so much.  If you had asked me at 19 weeks (when we found out about his T18) whether I thought I would make it emotionally or whether Samuel would make it physically until 32 weeks-- I would have been very skeptical. Now - here we are-- only 8 weeks away from our due date.  Now- we know that T18 is nasty- and Samuel can still pass at any point-- but our appointment yesterday- still left us feeling encouraged and with hope.

Please continue to pray for Samuel's complete healing (I suppose this is a wish-- but is also a hope-- as we know that HE (Christ) is able).  Please also pray that we are able to keep our eyes fixed on Jesus.  That we would remember why we celebrate Christmas this year-- that God sent His one and only son to us-- a King in the form of a baby.  A human baby-- who would grow and experience temptation, trial, excitement, sadness, pain and joy.  A baby that allows for us to have a personal relationship with a God who truly understands us.  This is the Saviour that came to redeem a broken world.  The same Saviour who provides Chris and Moriah and I with the hope for redemption in our current brokenness.

May you be filled with Hope and peace today. Enjoy your turkey dinners!!

Thursday, December 12, 2013

Jehovah Jireh- My Provider

"If you are a mother, you have a calling from God. God entrusts into your care a life, a future, a piece of what the world will become" (Jean Fleming- "A Mother's Heart", 17).

Yesterday- I felt defeat. I sunk in despair. I wept in the shower. I lost patience with Moriah. Yesterday felt like too much. I cried out to God and asked- "Why did you choose me for this journey?".

I tried to shift to a mindset and heart set of surrender. As I wrote in my journal- I waved my white flag. I admitted my inadequacy to walk this path alone. But my disappointment, my fear and my hurt took precedence over my joy, my trust and my knowledge of Christ's love for me.

In my turmoil yesterday- a dear friend indirectly redirected me back to the story of Abraham and Isaac. (Yes- I am going to reference it again).  Abraham had been made a promise that he would be the father of a great nation. And then- he waited. After waiting--- a long time-- he received the promise of his son Isaac.  Just when all seemed to make sense- God said, "Take your only son, the son you love, and go to the land of Moriah.  Kill him there and offer him as a whole burnt offering on one of the mountains I will tell you about".  There is NO record of Abraham questioning the Lord.  He walked in obedience.  He took his stance (based on what God had asked of him- this relates back to one of my earlier posts regarding the words God offered me through Chronicles). He did not make alternate plans (like- I think I will take this ram with me- just in case-- God needs my help to change his mind). He spoke in faith (when Isaac said- 'we have everything- but where is our sacrifice?" Abraham responded with "God will provide").  Abraham put God before all else and acted in complete surrender.  Abraham went with no map-- he just walked as God directed in the direction he was told to go.

Jehovah Jireh- The Lord Provides.  This is what I heard yesterday-- though I was not able to receive it until this morning.  He will provide a lamb in the thicket today-- whatever we need today-- He will provide.

This morning- my provision was hope.  I am a part of a Facebook group for individuals who have children with Trisomy 13 or 18.  In the last week- two different families have shared their stories of signs of healing.  They do not know the final outcome- but they have seen healing.

I have shared before- that I believe God will heal Samuel- I just do not know what this healing will look like.  Will it be physical and mental healing- for Samuel here on earth-- or will it be the ultimate healing of going home to live with our Father.

Today- I need to believe in a miracle-- this brings to mind some friends of mine from high school who have had a different journey with their precious daughter over the last year and a half-- they have blogged their story- 'Believing in miracles, Not maybes.'  Their faith and their journey has touched me many times. They held onto the hope of Christ's healing in their daughter's life and they experienced answers to prayer- like never before. Their journey continues but they have seen God provide- "immeasurably more than they could have asked for our imagined".

I know many of you- pray for us and for Samuel on a regular basis-- would you stand with me today and pray for his complete healing.

Pray for his body from head to toe:

Pray for the cysts on his brain

Pray for his cerebellum (at the base of his brain) which is being sucked down into his spinal cord.

Pray for his heart (which has a hole in it but is still beating as strong as ever)

Pray for his open spina bifida-- would God straighten his spine and close his skin overtop of it- so that it will not be exposed when he is born.

Pray for his lower body- that his cysts, cerebellum or spina bifida- would not have the paralysis affect that is expected. 

Pray for his joins- his clenched fingers, locked wrists, clubbed feet.  Pray that these would be straightened and healed completely. 

Pray for his feet- right now they are rocker bottom (shaped like a rocking horse)- pray that they are given arches (even flat arches- like his Dad -- would be good with me!)

Pray for any other anomalies that ultrasounds may have not picked up.

Overall- pray for the removal of the extra 18th chromosome.  

I do not know how our story ends.  I do not have a map.  Today- my lamb in the thicket is hope of healing.  Tomorrow it may be something different.  What I do know is that Jehovah Jireh- will provide what we need today-- if we take our stance and walk in obedience to Him. This is not our battle - it is His to fight. Thank you again for walking with us.

Monday, December 9, 2013

God's Handiwork

Psalm 139:13-16

For you created my inmost being,
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
Your works are wonderful,
I know that full well.
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,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

I have always loved this passage.  I have meditated on it. referenced it and hung onto it- many times in my life. As we journey with Samuel- I find that - while it is a passage that still brings me much comfort- it simultaneously stirs up questions.

I believe that God has created Samuel's inmost being. He is knitting Him together in my womb. His frame is not hidden from God- in fact God saw his unformed body. God knows how many days Samuel will have in my womb.  He knows how much time Samuel will have on earth and He knows the exact hour He will call Samuel to come home to be with Him.

I am struggling with understanding how God's knitting includes an extra chromosome.  Did God intend Samuel to be knit this way? Or- is Samuel's extra chromosome a result of the fact that we live in a fallen world? When I was little and suffered from asthma- did God knit asthma into my system or was my asthma a result of the fallen world that we live in? My mom suffers from a chronic illness- did God knit her that way or is it resultant of the fallen world that we live in?

I had someone respond to a previous post- encouraging me to remember that Samuel is perfect in God's eyes- perfect.  Is this true? Does God see Samuel's extra chromosome as perfect. Did He intend for Samuel to have cysts on his brain, troubles in his heart, open spina bifida,  locked wrists, clubbed feet, paralysis? I do not doubt for a second that God LOVES Samuel totally and completely. But does God view him as perfect? Or does God's heart break for the struggles that life will bring for him? Is God intentionally knitting him this way? I have a hard time understanding that.

I have no answer to this query- but I have wrestled with it a bit over the last week or so.  I do not know if I will ever find an answer- but I do feel like it is okay to ask.

We were blessed with the experience of a 3D ultrasound this past weekend. Samuel was face down, with part of my placenta blocking a part of his face at times and the umbilical cord was over his face-- thus causing our view of him to be somewhat obscured. However, we were still able to get some pictures of him and to view his precious being for just under an hour. How good it was to see him again. He is beautiful.

My heart was hopeful - going into the ultrasound. I hoped to have the technician show complete surprise regarding that we thought anything would misshapen or abnormal. Instead- she intimated that she was surprised that we had chosen to continue to walk this path of pregnancy rather than terminate.

As I watched his precious face on the screen. As I observed the obscure shape of his spine. As I more clearly saw the disfigurement of his limbs- I hurt for him-- yet I thought he was beautiful. I could have watched the screen for hours. I have loved every moment of our take home dvd and picture slide show. One of my favourite parts was when- in attempts to make him shift position- I gave him a few good pokes.  You could see on the screen- where I was poking at him- as my uterus would sink in towards him-- as I poked- he reached his little hand up and placed it against my uterine wall- right where I was poking.  It was as if I was holding his hand. What a precious little moment - that I have captured on dvd forever.

This ultrasound brought me such joy, such hope, such excitement --- yet such sadness at the thought that Samuel's future is still so unknown. Unknown but not undetermined- which brings me back to Psalm 139-- All Samuel's days and (my days, Chris's days, Moriah's days) were ordained for him before one of them came to be.  Though I have a plan as to how I long for these days to unfold-- I find hope in the fact that God already knows the outcome-- and that He promises to lead us and guide us if we willingly follow Him.

Without further delay- I would like to share a few pictures of our precious baby.
 He has the cutest little nose and lips. His little face is pressed between my placenta and uterine wall.
 Here are his hands and feet. I have been reading and rereading a book titled " A Mother's Heart"- The author reminds us that "it is the very gospel of His grace that He can repair things that are broken" (38). He will make the crooked straight.
    Another little face picture- cut off by something on the right hand side but precious nonetheless.


Monday, December 2, 2013

Gender Reveal

On October 11, just over a week after we found out that our baby has Trisomy 18 and that he is a boy we decided to throw a gender reveal party for Moriah.  I have always been a HUGE advocate of the gender surprise at birth.  Experiencing this with Mo was one of the best surprises ever-- however, once we found out that we may not have the opportunity to meet our baby before his passing- we felt that it was important to find out his gender so that we could name him, bond with him  and celebrate him- while we have him here (even if it is in utero) with us.

One way that we are able to celebrate him is to create memories surrounding who he is as our son and Moriah's brother.  This is not only important to Chris and I but we feel it is important for Moriah - who is anxiously awaiting her sibling and is trying to process the fact that he is sick and may never play with us here on earth.

Enough said-- I could not help but share a few pictures- from that night (which Moriah still talks about).  Our heavy hearts were eased and we truly celebrated together.  What a precious family memory.

We started our evening by making one of our favorite meals- homemade pizza!



 I had prepared a bin full of items that would act as decorations for our 'party'.  Moriah knew that they would either be all pink or all blue and she knew that pink would mean she was having a sister and blue would mean she was having a brother! We were a bit nervous about her reaction as she has wanted a sister all along!



 I think the balloons helped ease any of Moriah's disappointment surrounding the fact that we are not having a girl!


 Moriah loved helping set the table with some of the goodies from the bin!




After leaving our banner up for a few days - Moriah requested it to be moved to her room. It is still hanging in there. 


 We are excited for the gift of our little boy!!!


A Daily Emotional Duel Contributing to my Dual Personality

This post is finally being published. I started it last Thursday but have not had the gumption or the time to complete it.  Thank you to those of you who take the time to read and to pray.

The dichotomy of emotions we have felt over the last number of weeks (never mind the last ten minutes) is uncanny.  I feel like eight and a half weeks ago- after we received Samuel’s prognosis- I began to grieve his loss.  Now- here we are- less than twelve weeks away from our due date – and Samuel is still very much alive.

The prognosis has not changed- but I find myself hoping and dreaming for some precious snuggle time with my beautiful baby.  I wish and long for a little brother for Moriah to play with and push on the swing. I find myself picturing him snuggled on my husband’s chest for a nap, and waking me up numerous times in the night for feeds.  I wonder what his little nose will look like.  Will he look like Mo did as a baby or not? I long to experience his scent and to hold him close; I long to bring him home; I long for him to not be sick and I long to see him grow up. 

Sometimes- my longing turns to believing and then ----Wham! I am contacted by the nurse from Canuck place (who is wonderful by the way) who wants to know, if  Sam is alive when I go into labour, whether or not we want his heart monitored during the process as the stress of his sudden passing can make labour more emotionally difficult. Or, in the event that he does better than expected, we are asked whether or not we think we will be comfortable to bring him home and administer comfort meds when he appears to be in distress. Or, we are faced with the discussion regarding where we will choose to bury him—and whether or not we want to make the decision now or in the time immediately following his passing.  These moments hurt. 

Sometimes I feel like I am going to run out of breath and not make it through and then I resurface. The other day I found myself sharing my excitement for our pregnancy with a woman in a maternity store – only to get into my car and realize that though the dress I just purchased is for Christmas – I had subconsciously chosen it as something I could also wear to Samuel’s memorial.

Often, I feel warmed by Moriah’s excitement for her brother. Just the other day, she shared her desire to make a bed for Samuel in her room- rather than in the ‘would be’ nursery.  And, often my heart breaks when she tells me that- if Samuel does not get to play with us at all- or very long—and goes to be with Jesus- that God will give her another brother or sister. 

I love the memories of our gender reveal party (a party solely for Moriah)—I love the genuine joy on our faces in the pictures – as if this pregnancy comes with no worries or troubles but then I feel broken hearted at the thought that the only reason we know who we are having is because we needed something to hang on to – some excitement – in light of the news that we received at that second ultrasound. 

This dual of emotions spills over into my prayer life.  One minute I find myself trusting and praying for Samuel’s complete physical and mental healing and the next moment- I chastise myself for not being in a total place of surrender that is okay with whatever outcome the Lord chooses—and then the next minute I am back to doubting myself for not praying with enough faith. 

BE STILL.

TAKE YOUR STANCE—YOU WILL NOT HAVE TO FIGHT. I WILL FIGHT THIS BATTLE FOR YOU.

As I write this- this is what I hear. Be still. Take your stance. You will not have to fight.

As I write this- I am reminded that – when we feel too weak to keep our hands lifted in surrender—we are surrounded by others who hold them up for us. This always makes me think of Moses- when Aaron and Hur- provided Moses with a rock to sit on and held up his hands when he was too tired to keep his staff lifted high on his own.  Any time his staff was raised – the Israelites were successful in battle but any time he let them drop- they were defeated- Exodus 17.

I want to keep my hands lifted high. I believe that – arms stretched to him in trust and surrender (our stance) will mean that we do not have to fight- He will fight for us. 

This week there were many times our arms weakened – but you (our friends and family and even some strangers)- held them high.  You held them high by sending emails and fb messages and cards of encouragement. You held them high through your prayers for us. My parents held them high by taking Moriah last minute so that we could have some much needed process time. A friend from church held them high by dropping off another freezer meal; while an AIA colleague and friend brought us a zucchini loaf.  Our life group lifted us up through prayer and offered words of encouragement and release from group when we just needed a minute. My girl’s Bible study group- did not tire of hearing me process what I really needed prayer for this week. A past colleague sent a text full of encouragement, scripture and an offer to connect anytime. One of my best friends reminded me of Ephesians 6 and she prayed His armor over me. My mom took time to have an old school shopping date with me. One of the mom’s from preschool sent me an encouraging article from a Christian living magazine.  Our sweet Hannah (who lives with us) loved on Mo and helped keep our kitchen tidy.  Our friend Becki stayed with us this weekend and brought us laughter and has loved on Moriah in unbelievable ways.  My sister-in-law—sent an email this morning sharing what God was saying to her (BE STILL) and as a result she blessed me (especially cool since- I started writing this blog last week and I had not yet shared with her that God had been saying the same to me).  My brother called- just because. My mother-in-law faithfully checked in on us and continues to love us well in this.  I could go on and on and on. 

Our weeks have been filled with support and love and prayers for peace that passes all understanding.  Thank you for holding our hands high. 






Thursday, November 21, 2013

What's In a Name?

Growing up with an unusual name like Serenity- I have always been very name conscious.  In Kindergarten, I questioned my parents choice for my name as all the other kids made fun of me- at which point I renamed myself Sera - for a time.  By grade four- Serenity was cool again and I loved the uniqueness of it.  However- early in my teen years I really began to wonder if it suited me.  It means peace and calm and tranquility.  I rarely felt these attributes in my life. I often lived in fear and stress and worry.  As I have gotten older- God has often used the meaning of my name as something I desire to aspire to.  When life feels in turmoil- I feel called to live up to my title- and to dwell in peace, calm and tranquility.

I did not realize how much the meaning of a name meant to me- until it came time to pick a name for our daughter, Moriah. As many of you are aware - we struggled with infertility for a number of years before conceiving Moriah. During that time- God led us on a journey of surrender.  The story of Abraham and his son Issac became very dear to me.  How could a one hundred year old man- who had waited for a child for years and years-- willingly ascend Mount Moriah with the intention of sacrificing his son? Why would God ask him to do this? As I explored this story which I had heard many times throughout my life and which had impacted my parents as well- when I was ill as a child-- I could not help but see Abraham's posture of surrender.  Abraham had hopes and dreams and plans - and he loved Issac very much---- but he loved God first and trusted that God is good and that God wanted to give him immeasurably more than he could ever ask for or imagine.  Without hashing out every detail-- God used Abraham to challenge me as we awaited His plans for our family.  Did I trust God enough to walk with open hands?  I had a plan.  We were going to begin trying to conceive after being married five years.  By year 9 (at least) we would have two and then I would start convincing Chris of the benefits of four.  This is not what happened.  At year 9 we  had our first four month old with major uncertainties surrounding whether more would come in the future.  When Moriah was born- we wrestled through the 3-4 girl names we had on our list.  There were others that we liked the sound of better but - God very clearly showed me the significance of picking the name Moriah, which means- God Provides.   Every time we say her name- we are not only reminded of the journey of surrender that He carried us through and the provision that He made but we are vocalizing His goodness and a truth about His character.

All that is preface to sharing about our son's (I still love how that sounds) name- Samuel Tekoa Wiens.  Another story that was dear to our hearts as we awaited Moriah and then again as we awaited conceiving a second time- is the story of Hannah and Samuel.  Oh how she longed for a baby- a son.  She wept and prayed so hard that Eli thought she was drunk. Oh the emotions that are involved in pleading God to fulfill the desires of our hearts and trusting Him when we have no control over the outcome.  Samuel means "God heard" or "asked of God".  I love the verse that ends off the end of 1Samuel - chapter 1-- I prayed for this child, and the Lord has granted me what I asked of him. So now I give him to the Lord. For his whole life he will be given over to the Lord. This was not a name that we planned to use as a first name-- but it has always been in the running for a middle name.

As for the name Tekoa (pitcher of tents)-- it started as Koa (based on our love for Hawaii) and then emerged as Tekoa-- as a result of my Dad's suggestion.  Chris was never really on board with this as a legit option- but I tried to suggest it every so often - in order to normalize it for him.  By the time our ultrasound had rolled around- I still liked it but was not sure it would ever really be in the running.

A few days prior to our ultrasound (at which point- we did not plan to find out the gender of our baby-- I am ALL about the surprise), we had both felt that maybe we should indeed consider Samuel as a first name.  After having our ultrasound and experiencing the turmoil of our reality in the week following (and finding out the gender)-- we felt even more strongly about Samuel as a first name possibility.  Despite Samuel's struggles we held onto the fact that we had prayed for this child, and the Lord had granted us what we asked of him. So now we give him to the Lord. For his whole life (no matter the length) he will be given over to the Lord.  We slowly began to pry our hands open - into a posture of surrender that mimicked that which we had learned to practice as we had awaited conceiving in the first place. We wept in seeming drunkenness  as we grieved our baby's condition and as we cried out on behalf of our son.  We had not made any final decisions by the following week but we did head over to Chris' Grandma's for waffle breakfast.  Grandma and Grandpa pray for us faithfully and their hearts were heavy for us.  They had spent much time in prayer for us and our baby.  Grandma boldly shared with us that she felt that the Lord had given her some scripture to speak to her about our situation.  She proceeded to sit down at the table.  Without knowing anything about our name discussions- she looked at us and said- "This is your Samuel".  Then she proceeded to read 2 Chronicles 20.  The just of the passage is about Jehoshaphat and the people of Judah who were facing the attack of a vast army.  They had no power to face this battle but they kept their eyes on God.  His message to them was "Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God's.... You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the Lord will give you." (I will likely dive into this chapter more in a another post as it has become dear to me and there is more 'meat' in it- than I ever expected to find in 2 Chronicles!).  The point is- she had been given us these verses to share and she was obedient-- as she read on -- vs 20-- states- "Early in the morning they (people of Judah) left for the Desert of TEKOA".   Chris and I looked across the table at each other and could barely contain our hearts.  As we sat there- God- through Grandma-- confirmed the name HE had hand picked for our precious baby boy and tangibly reminded us that HE IS IN THIS and that HE LOVES US and Samuel Tekoa.  We made our decision that afternoon.  And we were even more affirmed after sharing with my brother-- who then shared with us that God had already told him that this was the name for our boy.

I do not know how this journey will unfold-- but I do know that it has no end. Samuel Tekoa Wiens will be our son and Moriah's brother for all of eternity.  No matter - how long we have- or do not have with him here on earth- we give him to the Lord. He IS an answer to prayer and we are blessed to have him in our lives.


Tuesday, November 12, 2013

A Bitter Cup

"If God has made your cup sweet, drink it with grace; or even if He has made it bitter, drink it in communion with Him" (Oswald Chambers).

For the first five weeks of this particular journey- I felt like I was utterly amazed at God's grace. I did not know how I (we) were functioning on a level that still contained joy-- when I really thought about what we are facing.  I kept telling people- I have never truly felt the peace that passes all understanding in this way.  It felt like a drug.  People were coming to the Lord on our behalf with hearts full of thanksgiving but also with hearts of petition and He was granting us the peace that passes all understanding.  We were facing crisis and - overall- we were staying afloat.

Something happened this last week.  I started to sink.  I took my eyes off of Him. My hurt felt bitter.  His actions or lack thereof seemed unjust. I was mad. Each daily activity was too much. This morning- I was faced with a devotional that started by quoting Genesis 22:2 - "Take now your son...". This is the passage where Abraham is called to take his long awaited for son - to the top of Mt. Moriah (there is no coincidence here- we have been on this journey before- in a different way) and to sacrifice to the Lord.  Abraham DID NOT question God.  He rose early and he went. He did not confer with others. He did not take time to wrestle with the injustice of it all. He did not choose the sacrifice or say- 'Okay- Lord- I will do this but only if you promise to not actually make me go through with it". Abraham- trusted the Lord and His goodness and promises enough to drink his 'bitter' cup in communion with Him.

This last week- I did not surrender.  I questioned. I sought others- who could speak into the unfairness of this all.  I wrestled with my own thoughts and laid out the injustice that I should be feeling and I held to that.  Rather than rising early- and trusting. I set limits.  I have told the Lord- that we will go through this but I have given Him conditions on how I think things (this sacrifice) should unfold.  I need to surrender. I actually cannot walk this path- without surrendering.

Please pray for our hearts to be filled with surrender. Please pray that we have the strength to see His goodness throughout this journey (if you have no idea what our journey is- feel free to read my last blog post). We appreciate those who are journeying with us. Thank you.

Saturday, November 9, 2013

The Journey

As many of you know- Chris, Mo and I are awaiting the arrival of our fourth family member on or around February 20, 2014. After years of infertility and then the gift of Mo- the journey continued as we hoped and prayed for a second child.  Once again- this did not come easily for us-- and we battled through doubt, insecurity, desiring control, trusting God and remembering His faithfulness.   Many times- I was (and still am) forced to remember the hurts of the past that led to the celebrations of the present - as every time I say Moriah's name I am reminded of its meaning-- God Provides.  By God's grace we celebrated in June as we received an early ultrasound and saw the heart - of our second little miracle - beating on the screen.

Where I feel like I mostly approached our pregnancy with Mo with reckless abandon-- I have approached this one with more trepidation.  I have had numerous moments- where I have had to remind myself of our journey of learning surrender and I have had to release this current pregnancy to the Lord. Approximately five weeks ago- on September 30th-- we went for our 19.5 week ultrasound. As Mo and Chris waited outside and the tech looked at our baby- I felt overwhelmed with anxiety.  So- I began to recite Psalm 23-- The Lord is my Shepherd; I shall not want.  He makes me lie down in green pastures. He leads me beside still waters. He restores my soul. He leads me in paths of righteousness for His name sake.  Even though I walk through the valley of the shadow of death, I will fear NO evil, for you are with me; your rod and your staff they comfort me. As I lay there- my spirit calmed and I breathed with excitement as the tech brought Chris and Mo into the room.  We enjoyed every moment of seeing our baby kick, suck its fists and actively move around.  I left there that day- with pictures in hand-- reprimanding myself for continuing to feel fear and challenging myself to trust.

That evening- I posted our ultrasound pic on facebook as an act of faith.  Sounds silly - I know.  But- I really do not love posting things on facebook and I felt that - if I did-- I was battling the fear of things not working out.  It was like I was making a statement that I believed- this pregnancy was for real (as there were still many people who did not know we were even expecting).

The next day- I returned home- after being out for the morning -- to a phone message from my Doctor's office to call when I could.  My heart sank.  I knew this was not good.  I had to wait an hour- as the office was on their lunch- so I chatted with Chris and I warned him of the fact that we may be receiving some bad news.  Our Doctor is phenomenal. He did not waste my time- he cut right to the point.  We learned that there were numerous abnormalities with our baby and that they likely pointed to a chromosomal issue. We were booked into Women's hospital before the end of the week and our journey continued.

I am too tired- to give the details of each moment of that day-- at this point. Though I may dissect it later- as the Lord's presence was evident on numerous occasions.  I will tell you- that we learned that our baby boy (who we have since named Samuel Tekoa Wiens) has Full Trisomy 18.  This is a chromosomal disorder where instead of the 18th chromosome being a pair-- it is a tri (or there are three strands). As a result- our precious boy is somewhat scrambled- internally and externally.  We sat in shock as we heard the list of markers that were present via ultrasound.  Our son has cysts in his brain, his cerebellum is sucked into his spinal cord, his head and chin are misshapen, he has a minor heart defect, severe (most likely open) spina bifida, his little wrists are locked and his fists are clenched (as - at ten or eleven weeks his brain did not tell his joints to move- so they have frozen),  his left foot is turned almost completely sideways (clubfoot) and his right foot is a rocker bottom.  We had just completed a two and a half hour ultrasound where we were able to watch him on the screen the whole time.  How could he look so much like a healthy functioning baby- and have so many problems?

The outcome-- yet to be determined.  The stats say- 50% of T18 babies pass in utero or during labour.  If a T18 baby is born alive- the median for life is 5-15 days with 8-10% of live births lasting until one year old.  There are cases of children who live into the second decade but there is much controversy over the quality of life that they have.  We were offered the option of termination- that day.  We did not take it.  We found out later that 9 out of 10 T18 babies are terminated-- making us a 'unique case' for the medical staff to deal with.

So now what? That is what we asked the next day waking up.  The last 5 weeks have been filled with hopes and prayers for God's miraculous hand to knit these abnormalities out of our Samuel.  We know He can heal.  We also know that He has taught us before- that we are called to surrender to Him. Not with the assumption that surrender gets us what we want but with the understanding that HE IS A GOOD GOD and that- no matter how things unfold-- HE REMAINS A GOOD GOD.  Samuel's healing may be truly the best healing of all- in that he may know what it means to live in eternity with Christ- before he even has to experience any pain on this earth. I know this- but it grieves me to say it.
The last five weeks have been filled with dappling in funeral plans and deciding if we want photos whether we experience a live birth or not.  They have been filled with hoping that we have one more day with him and then wishing all of this away as it is emotionally exhausting.  They have been filled with a new comprehension of His peace that passes all understanding -- a wonderment at how we are functioning the way we are when our circumstances are the way they are.  They have been filled with moments of questioning 'why'? Of grieving. Of breaking down at the most unexpected moments.  Of celebrating fetal movement and continued growth-- well at the same time having moments that I resent it-- as it is a reminder of life-- where I feel like I am facing the realities of death.  Our days have been filled with wrestling with our faith- how do we pray???? How do we trust??? We know HE IS FAITHFUL-- we have seen it in the past-- how do we journey through this desert and not forget that He remains the same- yesterday, today and forever.

Please pray. Pray for Samuel. Pray as the spirit leads. Pray for our hearts as they are heavy and broken. Pray for protection over our faith- that we do not lose sight of Christ in this. Pray that this situation will be redeemed and that glory will be given to God. Pray for Chris and I- that we are able to communicate well and process individually and together. Pray for Mo- who knows her brother is sick but still talks of the day that she will push him on the swing and teach him all that she knows.  Pray that while we grieve the struggles with one child- we have the strength to be good parents to our active and lively 3 year old.

Thanks for reading. I feel like there is so much to tell but I needed to start somewhere.