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.