April 29 – Test Result Day by Molly

During  the two week waiting period there was some hope that our baby girl did not have Trisomy-18.  Even though I had a lot of the markers, there were times that it felt like the test was going to come back normal and everything would be fine, and there were other times when it was hard to hope.  But there was still hope.  Nothing was final.

I also kept going back to how God had spoken to me before she was conceived about the certainty that we were going to have another baby.  Once again, this didn’t assure me that she did not have t-18 but it assured me that He knew about this beforehand, nothing was a surprise to Him or a mistake.  The two scenarios in my mind were that He had spoken to us so much about her, so we could be assured of her health, or that He had spoken to us so much about her, because He knew ahead of time that she would have t-18 and He wanted us to have the comfort of knowing that this was in His plan.  Either way, I knew He was in control.

A few days before we found out Todd and I went to see “Heaven is for Real”.  Regardless of what you think of the movie, we both felt like it was significant that we saw it at this point, because it was just a beautiful reminder of how real heaven truly is and that if our baby was to die prematurely, we would see her again.  We were also anointed with oil for healing, and prayed for by one of our very good friends and elders at our church.  While we cried through the whole thing, it was a beautiful experience and a reminder that healing is in God’s hands.

 I knew that the results would come in 7-10 days and of course we were hoping earlier than later, but wanted to continue to live life as normally as possible.  We had offered take our friends’ kids for two days and one night so they could have an anniversary getaway.  They offered to back out when all of this happened, but we insisted it was ok.  I figured if we did get bad news, it would be good to have something to do in front of us.  So Monday Todd was home and I had some help, but Tuesday he went to work and I had 9 kids 10 and under.  Needless to say the kids all had an awesome time together, but it was a crazy day.  Thankfully it was sunny and they were outside most of the day with lots of rom.   Another close mutual friend came over with her two kids for a play date so I did have another adult there for some of the day and the kids had a great time together and it was good to relax and talk with her on the porch.

A curious thing happened in the morning.  Actually, let me back up.  On my birthday, I got a pm on Facebook from a man who I went to church with when I was young.  I used to babysit for his kids when they I was a teenager.  They are grown now.  He wished me a happy birthday from he and his wife and I thanked him and he said that he was praying for me and for our baby.  At that point, we were still in the waiting period and I wondered if he’d heard anything about our baby, but it became apparent later that he hadn’t.  I thought it was nice, though it struck me as odd, since I haven’t talked with him or his family in years.

Tuesday morning though, I woke up with another pm from him in my inbox saying that he was awake in the night and that the baby and I came to his mind and he was praying for us.  I thanked him and decided to briefly tell him that we were having some complications and were waiting for a test result to come back soon.  He replied that he would be praying.

4:00 or so on Tuesday the kids were (thankfully) all playing outside and I got the call from the genetic counselor.  She was very gracious, kind, gentle and professional.  I don’t remember much of the preliminaries, but when she told me that the test result was positive, I tearfully repeated back to her, “so she does have trisomy 18?” and she told me yes.  It was later confirmed that Vivien had full trisomy 18, not mosaic.  Mosaic T-18 would give her a greater probability of survival.  I made it through the phone call with just a bit of voice quivers, but afterwards of course I lost it. 

I hung up and immediately called Todd, who was at work.  He offered to come home, but I told him he didn’t need to, thinking that we would need the sick leave later.  Our friends had texted me and I knew that they’d be back in the next couple of hours or so.  We agreed not to tell the kids until he got home, unless it just came out because I was struggling.  He was ok if they knew, but if I could wait it would be better.  I called my mom, and he let his parents know.  But when our friends arrived, I couldn’t keep it in.  I told them tearfully that she had been diagnosed with trisomy 18.

Once again, I felt like it was Jesus’ mercy in timing to have a friend there to hug and cry with me, even though Todd was at work. She was so sweet, weeping with me and offering support.   In addition to this, He allowed the phone call to come right before they came home instead of earlier.  Even though I thought I’d be ok taking care of all the kids, all I wanted to do was crawl into a hole.  I had pictured myself yourself stronger than I actually felt.   I am thankful that God knew.  Our friends offered to watch the kids for a bit.  When the kids saw me crying I was honest with them about the results.

Our kids have all responded differently to what is going on.  They have all cried about the baby, (except Iva) at different times and it just seems to hit them differently, but that day Lucie just burst into tears when she heard.  I went upstairs to be by myself a bit, but she followed too.  The older two were ok for the moment, distracted by playing with all the other kids, but Lucie and I cried together.  It was good to have her there, because it kept me from getting too deep into myself as I kept telling her that Jesus was in charge and that He was going to take care of our baby.  Speaking the truth about Jesus and our baby to her, also spoke truth to my own heart.

Our friends were so sweet and offered to watch the kids if I wanted to go to the station to see Todd.  I decided to take them up on it, as he was in Renton that day, but when I called, he made the decision to just go ahead and come home.  Despite what I had said before, I felt immense relief to know that he was coming home.  I was very tired already and the emotional strain on top of the physical strain was enough to stop my protests.

Our friends made sure that we were ok, and then left with their kids.  I had a couple of hours before Todd came home because someone had to relieve him.  I talked with the kids a bit and I don’t think they quite understood the full impact.  Over the past few weeks, their understanding has grown.  But in that moment, even Lucie was ok and they all ended up going back outside and playing.

But once again, Jesus revealed himself to me before Todd even got home.  I looked down at my phone and an hour after I had received the call with the results, my friend from our old church had messaged me again.  I told him the results and thanked him for praying, realizing that the timing of him waking up last night was obviously God.  He sent back a message explaining that he had really felt led to pray for us and that God has given him a gift of praying for pregnant mothers, their babies in the womb and newborns, when there was a need.  He said that he believes it stems back to a miraculous healing that he received when he was 15 months old.  He loves ministering in prayer this way and he let us know that he would continue to pray for us throughout my pregnancy.

Once again, Jesus knew ahead of time and the Holy Spirit was already setting up comfort and prayer for us.  What are the chances of him messaging me just that morning?   In addition to this, he had never mentioned praying for any of our other babies, just this one.  After I got the message, I once again burst into tears, realizing how loved I am by the Holy Spirit and that He is my comforter, preparing ahead of time for what we would be going through that day by sending someone to pray and show that Jesus is actively involved in our life.  He is so kind to us.

Todd came home and I made arrangements to not go to my Bible Study the next morning.  We spent time that evening and the next day as a family, just talking about what the future might hold, praying and crying.  But at the same time, both of us did feel peace from Jesus.  I was able to sleep.  God had also spoken to Todd that we were “going to be ok”.  He didn’t know what that meant circumstantially, but once again, it assured him that God is taking care of us.

Up Next – How the Word is living and active and brought us comfort and LIFE at exactly the right time.

Running Towards the Giant - by Todd

On a recent morning, after we received the diagnosis of Trisomy 18 for our baby girl, I was reading along in I Samuel. I love reading I/II Samuel, Kings and Chronicles in the Spring - must be something about conquests and wars. My heart was heavy over the journey that lay ahead. To be honest, I had been secretly hoping for a late miscarriage or even still birth, compared to the emotionally taxing work that lay ahead. My justification was that it would be easier to say goodbye without ever having formed the strong heart attachments that come with holding/feeding/caring for a baby with disabilities whose life will without a doubt be shortened. The physical/emotional battles that lay ahead felt overwhelming and beyond my strength.

Then I came to I Samuel 17. This is the beloved passage of David conquering Goliath, the Philistine who dared to taunt the armies of Israel. As anyone who has raised young children knows, leading/correcting/guiding/loving these little people can seem more daunting than a nine foot Philistine. Raising these little ones is a glorious work that I am sure will not be fully rewarded or recognized until we enter the next life. I can't help but think there is a very real reward for those who have strived well in the battle of parenthood while on their knees before Him.

The writer of I Samuel 17 goes into great detail, describing the strength and overwhelming presence of this Philistine warrior. He challenged the army of Israel to a fight man-to-man, with the consequences being complete submission for the losing man - and his army. None stood to challenge him. None gave answer to his taunting. His presence and challenge literally left the army of Israel without speech or action. Save for a young boy who found unusual confidence in God, this battle may have had a very different outcome.

What struck me as I read this was the fact of how David responded to the Giant's threats. His confidence was clearly not in his own abilities, but in God's grace through his life. To King Saul, he says "The LORD who delivered me from the paw of the lion and from the paw of the bear will deliver me from the hand of this Philistine" (v. 37). David had seen God rescue him in the past and his faith in continual/future grace from God gave him strength to press on for what lay ahead. As the song Oceans by Hillsong says "You've never failed and you won't start now". This was David's confidence: that the past grace God has poured into David's life would continue as future grace.

On reaching the battlefield and hearing the jeers of that no-good, nine-foot fool, David replies "You come to me with sword and with spear and with a javelin, but I come to you in the name of the LORD of hosts, the God of the armies of Israel, whom you defied. This day the LORD will deliver you into my hand, and I will strike you down and cut off your head.....that all the earth may know there is a God in Israel, and that all this assembly may know that the LORD saves not with sword and spear. For the battle is the LORD's, and he will give you into our hand" (v. 45-47).

Spears and javelins and swords are intimidating. Disease and the consequences of living in a sin-infested, broken world are scary and overwhelming. But there is a reality sharper than any sword and more powerful than any disease. While we live in this realm of limitations, consequences and disease, there is an eternal world not bound by the gravity of our sinful world. There is an eternal realm without disease or sickness and every tear is wiped away by a Savior who felt and bore the consequences of our iniquity. The broken are healed and the dead are raised when they enter that realm. Death and disease no longer have a grip - it's only a shadow or dream from their former life.

"When the Philistine arose and came and drew near to meet David, David ran quickly toward the battle line to meet the Philistine" (v. 48). Until facing a giant of my own, I had not seen this before. David ran toward the Philistine. His confidence in the God who had up to this very second been faithful to him gave him strength to run (almost recklessly) toward Goliath. With abandon, he throws off the seeming reality that according to the laws of this world, he is defeated. Statistics and past performances by others did not determine his actions. He was driven by the greater reality that his future success depended on a God who loved, cared for and met his every need. His security rested in the heart of a Father whose affections were on him and who was not bound by the "realities" of this world.

This is exactly what I needed to hear. I can run toward this giant. Not because I am a fighter well prepared in the tactics of caring for a baby with disabilities. But because I know Him to be faithful and loving and true. He has never left me, nor will He now. I need not shrink back in fear, but run toward the battle in confidence that I have a Father whose hand is on my shoulder and will continue to sustain me.

With every battle we face in this life, we will be tempted to be overwhelmed by the limitations of this world. But our success (which in the end, may or may not look like success) depends not on how well we equip ourselves, or gather supposed evidence that guarantees our victory, but on the confidence and belief that the God who gives us every breath and heartbeat will continue to sustain us. Why would He leave us now? Though we may be faithless, He remains faithful, because that is who He is (2 Tim. 2:11–13).

I don't know what our battle ahead will look like, or how it will be played out. But the giant we are facing in this life has no grip in the next. Our confidence is not in doctors, prognoses or medicine, but in the God who daily pours out affection on His beloved people. The torrent of His love will continue. His mercies are new every day and His grace sustains us in ways we have yet to even be aware of. My confidence is in Him and Him alone.

A New Season - April 14th and an Apology in Advance... by Molly

Since posting the letter below, we've been so overwhelmed with support, prayers, tears and love from all of you.  We appreciate so much all that has been shared with us.

One thing that has been helpful is following blogs and reading others’ stories of their experiences with their babies or children diagnosed with t-18.  It has caused me to think about sharing more of what we are going through and chronicling it on this blog.  One blog that has been particularly helpful for us is this one: http://noraroseyusko.com   I love how she just shares on the spot, doesn't worry about “messiness” –  and is willing to be honest about what she is going through.

As I was praying about this and thinking about blogging, I felt led to be a little bit more open and honest emotionally here with you.  I talked with Todd about it and we both have felt like it would be good to be more vulnerable in our writing.  He is glad to have me write more in depth and is planning to do some more writing himself.  God has brought us a long ways in a few short weeks, and I know that He will teach us and comfort us and lead us more through this journey.  So many people have said how strong we are, but I feel like I want to be honest about some of the more selfish things that we have struggled with and through.  We are at this place with Jesus because of His speaking to us and helping to change our perspective, even in these few short weeks, but we have definitely had moments of absolute despair, grief and wanting to escape.  In addition to this, I was listening to Matt Chandler (pastor of The Village Church) a few days ago he was talking about the need for authenticity and openness as believers.  So I want to be authentic and share some more of what God has done in our hearts.  I will try to chronicle what has happened until this point and hopefully share more of what Jesus has done.

I apologize in advance to those who are good writers.  This may just be more for me than for you.  Be forewarned that I am, verbose, detailed and am not a polished writer.  I process emotionally through writing and I will truly admire anyone who has the patience to slog through all of my details and thoughts.  This will be messy and long.   I will try to give shorter updates to those who are interested, but if you want to come along for the long ride, feel free…. - Molly

April 14th – The Initial Concerns

 This is the ultrasound we’d been waiting for…  The whole family was looking forward to finding out if we were going to bring home strawberry or chocolate ice cream.  We were fairly confident that we were going to have a boy even though we knew we’d be happy with a girl or a boy.  We were kind of thinking this was going to be our last little baby and had so many plans for the future.  We had prayed so much about conceiving this baby, and the way that Jesus spoke to both Todd and I and made it so clear that we were to have one more is a story in itself that almost felt miraculous from my perspective.  When we did finally decide to try and ended up being pregnant that very month, we felt like it was God’s confirmation and were thrilled.  I honestly almost felt more excited about this baby than I had about the others, if that is possible.  I felt like 5 was the right number.  Four…just…wasn’t.  .  There were many other things God spoke to me and I was just looking forward to this baby so much. 

One thing that I was very aware of when we were thinking about conceiving was the fact that I was older and that Down’s syndrome was a real possibility.  I knew this beforehand, but I still wanted to have another and felt confident that if that happened, we would love him or her well.  I didn’t really think it would happen, but I was very aware of it and felt like I was ready for it if it did happen.  I was praying for twins as I knew that was a greater possibility because of my age as well.

 Knowing that this baby was most likely to be our last, I was also looking forward to a new season of life.  It felt bittersweet, but I was at the point where I could look forward to it.  A new chapter was coming, one where not being pregnant or nursing was just around the corner.  In the last 10 years, the longest I’ve gone without being pregnant or nursing is 7 months.  And by the time this pregnancy was over and I’d nursed for the year according to plan, it would be about 12 years.  Getting my body back, my weight down, and energy back was very attractive.  I do get my energy back for those short times when my weight is down, I’m done nursing and before I get pregnant, and it is such a different feeling than when I am pregnant or overweight.  Last time I had about a week….  Then thinking about the freedom of having all 5 able to walk and eventually out of diapers was another amazing thing.  Even though I could easily keep going and have more, Todd was ready, I trusted Him and God and felt like the timing was right.  I knew I wouldn’t miss pregnancy (no I don’t love it – I LOVE the results – the babies,  and it’s worth it!) and despite knowing I would miss the labor, newborn, baby and toddler phase, I truly was looking forward to moving on and had a lot of plans in my head.

The ultrasound was uneventful enough and we were so surprised to find out that we were going to have another girl instead of a boy!  Lucie happened to come with us to my appointment and just watching her sweet face and listening to her cute chatter helped me accept and be happy with the fact that we were going to bring home strawberry ice cream to the kids and enjoy another sweet baby girl.  The tech mentioned some cysts and a smaller size but she said that both of those could be quite normal.  I wasn’t worried.  However, when we went afterwards for the consultation with the doctor and she mentioned the possibility of t-18 and her recommendation that we get further testing, I still wasn’t worried, but I noticed that my throat got choked up as I asked a few questions.  We would have to call the next day, schedule the test and then wait 10 days after that to find out definitively.

I thought I was going to be ok, but as we drove home I couldn’t help feeling let down.  We brought home the pink ice cream to the surprise of the kids, talked to Todd’s mom about what the doctor had said and then called our parents and let them know.  We tried to be happy for the kids’ sake, but the reality of what might be began to hit me.  We only knew a little, but we had been told that only 50% of babies with t-18 make it to birth, and if they do, only 10% make it past their first birthday.  If they do continue to live they most likely will function at the level of at 6-12 month old infant, without talking or walking.  All of my plans and expectations began to have the grip of fear around them. 

I don’t remember much more about the evening except that Todd and I talked more after the kids went to bed and I did some crying and went to bed feeling exhausted, only to wake up in the night with more fear, unable to sleep.  After my bout with insomnia and anxiety a few years ago, I was gripped just with the desire to not go through that again.  I was feeling some of the same feelings and sensations as I did then, and I did not want to go there.  But it was happening.  I knew that this is just a “possibility” not a sure thing, but I couldn’t shake the fear and grief.

I do remember the next day because I could.not.stop.crying.  Todd had to go to work and thankfully my playdate for the day canceled so it was just the kids and I.  I made it to devotions time in the morning with the kids, but that was it and I lost it.  I had decided that we should read something about healing so I turned to the gospels and read about Jairus’s daughter.  That was when I started crying.  I tried to make it through the rest of devotions for  their sake.  They were so sweet and bewildered.  When we came to singing time, Silas (who hates to see his sisters cry and hardly ever sees me cry) suggested that instead of singing Jesus Loves Me we should sing “Jesus heals baby.”  We did, but it just made me cry more.  He was so sweet.  I made it through the morning. 

I felt like 9:30 would never arrive to make the appointment for the test and when I finally called to make the appointment, my voice was shaky and it was all I could do to keep it professional with the receptionist.  We couldn’t get an appointment until a week later, and I knew that it would be 10 days after that for the results.  It seemed like an eternity.

 I kept telling myself how ridiculous I was to grieve like this, when we didn’t even know if our baby had this or not.  Why was it hitting me so hard and what was wrong with me?  I did tell a couple close friends via text, but I really just wanted to be alone with Jesus.  Later in the morning I sent the kids outside to give free reign to my grieving and sobbed hard.   I yelled at Jesus for help.  I didn’t want to have to go through this pain and fear for two weeks while we waited.  I didn’t want to wait a day, much less two weeks.  It felt like agony.  I told Him that I couldn’t do this for two weeks and begged him to give me peace and heal my emotions.   I was so glad the kids were outside. 

Todd called mid-morning and was very sweet to me, and I talked to my mom, but was truly unable to talk without crying.  But I kept telling myself that it may not even be true.  And even if it is, God will give us grace.  What was the matter with me?

By the afternoon I was a little calmer and just spent time praying and thinking though still crying at the drop of a hat.  I felt like I couldn’t just hope in healing.  If I just hoped in her being ok and not having t-18, my hopes could be dashed.  But what I did know was that my hope was in the truth that Jesus could give me joy no matter what the circumstances.  Isn’t that what I’d just written a few months earlier on our blog?  For the past year, I have been studying and thinking about joy in Jesus.  It was one thing to tell myself this, but it was another thing for the reality to work itself out in my emotions.

Jesus was so sweet and I felt like He took me to three scenarios.  The first would be a miscarriage.  I had gone through that before.  He reminded me that though it was difficult, He gave me grace to go through it, He brought beauty out of it and although I still love my Nathan Beau, I know that He is happier in heaven than here.  Jesus has brought healing. 

The second was more difficult.  If our baby died sometime in the first year, (usually in the first two weeks) it would be hard to let her go especially thinking about going through all of labor and pregnancy and ending up with no sweet baby on earth.  The selfish part of me that doesn’t like pregnancy felt like this wasn’t fair.  To go through all of this and not have a baby in my arms.  But again, if she has this, I knew that she would be happier in heaven, away from pain, with Jesus, safe and sound.  Again, He has brought me through miscarriage, through the death of my father, and I knew that He could bring us through this with grace and eventually, help us to see beauty and give us joy.

Strangely, or maybe not so strangely, the third scenario was what scared me more than anything.  To think of having a child that could live into their teens or early twenties without being able to talk, walk, living in diapers, in a wheelchair, needing to be transported everywhere and with numerous health issues.  Truly the selfish part of me struggled against this.  I will be gut-honest and tell you that though I would never even consider an abortion, I felt like I could understand why someone who did not believe that God holds life in His hands, but that we can and should control it – might think it would be better off if their baby died.  I could see how they might even call this compassionate.  Emotionally I felt this, but I also knew that God knows far better than I do what is good for me, good for her and good for our family.  I knew that He was trustworthy.

I will also be honest that the work of this third scenario scared me.  It doesn’t scare me now, but it did then.  I had gone to t-18 websites and seen the pictures and I didn’t want to look for long.  It was just too much.  I read a little but just enough to understand a bit of what could be.  My selfishness just couldn’t handle it.

But even as I processed through some of these emotions that first day, Jesus spoke truth to me.  You see, I was looking at these children without the love that He gives.  I don’t have the capacity to love as I should but He does. And He can give this to me.  Story after story of those with these children came with words like “he completes us” “she is so beautiful” “I have such a sweetheart”.  So many of the families talk about what a beautiful, wonderful part of the family their child is.  And Jesus reminded me that He would give me grace and love for my child.  He could do this.  If she lived for a long time, our life would be different and yes, much more work would be involved, but we would adjust. We would grow with her, as she grows and our love would grow. 

In addition to this, He reminded me that I have a beautiful life and having a special needs child would not change that.  I knew our kids would love her, welcome her and that she could smile and enjoy us and we could enjoy her.  We could still laugh together, love together.  I wasn’t losing my life or my family, but we would be gaining a sweet child to love and be loved by.

It didn’t happen immediately, but as He lovingly brought me to each of these scenarios, I felt like He spoke me in a practical and even emotional way, “You can have joy in this.” And this brought peace.  A peace that didn’t make sense.  It wasn’t a peace that she didn’t have t-18. But it was a peace that no matter what the future holds, I could have joy because of Him.  I went to bed that night, trusting Him more, and slept well.  It is interesting that scripture says “a peace that passes all understanding.”   It didn’t mean that I wasn’t going to have more moments of anxiety and struggle, but I felt already like He was going to bring me through it.

April 16^th  - Waiting…

I stayed home from Bible Study, still struggling and grieving, but feeling slightly better.   Todd came home from work in the morning, and we talked more and cried a bit more together, but I felt more hopeful.  We had a very busy day, and had decided only to cancel Bible Study.  In the afternoon some of my closest girlfriends were coming for an art class for our kids and it truly was so good to spend time talking with them, crying with them and sharing what God was doing.  They all took time to lay hands on me and pray for me and for our baby and for the future.   That evening we had planned to celebrate my sister and my birthdays together by going to the tulip fields and we decided that we wanted to keep things fairly normal for the kids’ sake.  We had a good opportunity to spend time with my Mom on the way up there and even were able to smile a bit and enjoy the tulips and ice cream with my sister and her family.

Jesus was already working too.  He was sweet to Todd as well as me.  The day after the doctor talked with us, Todd just “happened” to be working with a friend of his that he’d met years ago when he went through the fire academy.  He has 6 kids, they are believers and they home school.  His fourth child is a boy with a rare disease and very special needs that has required many surgeries.  He was able to talk with Todd and very much relate to much of the emotions and questions that Todd was having right at that moment.  One of the things that he said was that the initial finding out was the hardest.  He was able to share with Todd what God has done.  Todd said it was so good to be able to talk with him and relate with him that day.  Jesus has perfect timing.  In addition to this, Todd’s mom found out that a lady in her small group had a daughter with t-18 that lived sixteen years.  It was encouraging to her to talk with her about it as well.

Thursday I woke up, just feeling exhausted from the drama.  I felt like I’d been so low and discouraged Tuesday, and then, just the fact that emotionally, I was doing better on Wednesday made me feel hopeful and up again.  But Thursday I just felt done.  It had only been three days, but already it felt like a roller coaster.  I struggled because a part of me wished I could go back and wake up again and none of this would be happening and our life would be “normal” again.   But a new “normal” had begun.  One of waiting.  We told some friends and family during this time and over the next week, many laid hands on us and prayed for us and encouraged us.

We kept our appointments and did life as normal.  Jesus continued to give us great peace and show us that we could trust Him no matter what the future.  We were able to smile and enjoy time with friends and family.  Nights were a bit harder.  Both Todd and I struggled the most at night, sometimes having trouble sleeping.  During the day it was easier to set it aside in the business of life, but at night, it was there in front of us.

Finally our appointment for our test came.  We had another full ultrasound and then we spoke with a genetic counselor, who was very kind and helpful.  One thing that a friend of mine had shared with us  was that she was praying specifically about our baby’s hands and feet and she felt like God spoke to her to look for a physical sign.  In the ultrasound one of the first things the tech saw was that our baby’s hand was open.  Normally babies with t-18 cannot even open their hands.  We were also told that she didn’t have clubbed feet.  There were other things that were more common in t-18 like a slightly receded jaw, a bigger forehead, the cysts and the small size.  I felt like there wasn’t anything for sure and I almost felt like God had a very purposeful waiting game for us without anything definitive.

One thing that the genetic counselor did tell us was that this blood test we were taking was a DNA test where they actually isolate the baby’s DNA in my blood and can see the chromosomes.  There is so much new technology out there and this test had only been available in the past couple years.  So the answers would be quite definitive when we got them.  In the past when people were told their baby had a genetic abnormality, it was based on probability and screening, not DNA.  This is why you hear of so many false positives  where people are told one thing and their baby ends up being fine.  But if this test revealed that our baby had t-18, it truly would take a miracle for her to be born normal.

In all we came away from the appointment somewhat encouraged, especially by her open hand which was a physical sign.  At the same time, again I didn’t feel like my hope was in her not having t-18 but continued to be in Jesus’ joy no matter what.  I felt like I was clinging to the truth that in all of those 3 scenarios, Jesus had shown me joy was possible.  I wanted to have more faith in some ways, and just believe for a miracle and that she would be fine and normal.  But I didn’t feel like He’d given me that faith.  I’ve been so blessed with friends who were believing and speaking life into our baby.  One calls her “perfect baby” and nicknamed her Evie – which meant life.  The uncertainty though, was difficult.  I kept thinking that I didn’t even know which of the 3 to hope for if she did end up having it.  Each one had its difficulties and its comforts.  I was almost stressing about which to hope for, when Jesus reminded me gently that I don’t have to figure out which one.  Oh yeah….that’s not up to me, it’s up to Him.  Relief again.  I love His truth.

Up Next – April 29 – Test Result Day…

News about Vivien - by Todd and Molly

As I share the following letter with you that Todd and I wrote, I can't help but look at the three blogposts preceding this one.  I must tell you that while we are grieving and processing the journey that we have ahead, I still believe every word of what I wrote in those posts, without knowing where life was going to take me.  In fact, the truth in those posts is even more real to me now, and has brought me great comfort.  What Jesus has assured me in this time, is that no matter what the outcome, because my joy is in Him, I can still have it.  It may be mixed with sorrow but we can focus on celebrating the joy of our precious little girl no matter how long she lives.  Jesus will give us sustaining joy no matter what the circumstances because He promises this.  And in the past few weeks He has assured me of this in a tangible way emotionally - not just in my head but in my heart.  I have not been without tears, but there is an underlying peace about the future, because of who He is and the joy He has for us.  We can absolutely trust Him and know that our little girl is in His hands, and that brings joy despite the circumstances.  I am so grateful. - Molly

Dear Friends and Family, 

As many of you know, we are expecting another little girl on September 2^nd.  We’re excited for her arrival and would appreciate your prayer.  We know we have told some of you about this already, but we wanted to give some more details and ask for specific prayer.  Several ultrasounds, a genetic DNA test as well as an amniocentesis test all reveal that she been diagnosed with Trisomy 18 or Edwards Syndrome.  Only about 50% of babies with this condition live until birth.  Of those who live through the birth, only about 10% live until their first birthday.  Those who do survive can sometimes live into their teens, but with major physical and mental disabilities about the level of a 6-12 month old infant.   You can find more info here http://en.wikipedia.org/wiki/Trisomy_18  and here  http://trisomy.org  if you are interested in knowing more.

We have definitely been grieving, crying, processing and working through so many emotions.  The first shock of the news was the hardest, but God continues to give grace and comfort.  We do feel like God has given us an amazing, if not almost miraculous sense of peace.  We have cried many tears and know we will cry many more but overall, He has given us a beautiful baby girl, and this diagnosis does not change that.   We will enjoy the life He gives our little girl in the womb and, hopefully outside the womb.  Every day that she’s with us is a celebration of her life.  Probably the most difficult part of this is the uncertainty, not knowing if this will be a journey of a few months, a year, or of many years.  God has emotionally taken us to each of the different scenarios and shown us how He can give us peace and even eventual joy in every circumstance.

Please join us in praying for her.  First of all we are praying for complete healing for her body.  We know that Jesus is big enough to change chromosomes and work miracles.  At the same time we are thankful for the medical community and early diagnosis to be able to prepare for whatever He has for us.  We would appreciate prayer for continued peace, grace and comfort.  Pray for our children too as they have some understanding of what is going on.  The three oldest have cried and grieved at different times, in their own ways.  We continue to help them process everything that is going on.   We would also appreciate prayer for them at the time of her birth, especially if there is an extended hospital stay.

Please pray that we would not be anxious, especially about the medical decisions that may be ahead.  If she does live past the birth there are a lot of decisions that will have to be made.  Some parents of babies with Trisomy 18 opt to use every effort and surgery to keep their babies alive.  Others, depending on the severity of the handicaps (as there can be a range) choose to make their babies as comfortable as possible without heroic measures.  We most likely won’t know the severity of her handicaps until she is born.  There is a relief in the fact that it’s not up to us.  We’re confident God will continue to lead us through this wilderness.  Nothing is beyond our capabilities when we’re leaning on Him.

We would also ask for prayer in how we go on with everyday life.   We have decided to try to keep many things normal, but to try to leave more margins for family time.  Please pray that God would show us what to say yes and what to say no to.  We would appreciate continued prayer for our marriage as we know that anyone dealing with the sickness or loss of a child can feel the pressure on their relationships.  While our friendship is closer than ever, and we’re fighting this hand-in-hand, we also know that we’ve never faced a trial like this.

Through this experience, we have been comforted in amazing ways. In praying about conceiving this baby, we feel like God made it so clear to both of us and spoke to us that we were supposed to have her.  The fact that He has spoken to us so much already about this little girl has given us great comfort in knowing that this is not a surprise to Him and not a mistake.   In addition to this, we have felt very supported as so many family and friends have prayed, cried and loved us well through this.  There have also been “providential” encounters with others who have gone through similar illnesses with their child.  We have had people pray without knowing all that was going on, at just the right time, and others who have spoken things to us that the Holy Spirit has spoken to us privately – confirming His active work in all of this.  We have also been tremendously encouraged through some portions of scripture that have jumped out at us (Psalm 46, portions of Isaiah 44:1-8, 24, 45:9-13, 25 and 66:8b-13).  Though we continue to have heavy days, we are still able to laugh with our kids and even have times of joy.  We know that God’s grace is very real and He will walk us through this.

We’ve recently given our girl the name “Vivien Grace Merry”.  Vivien means “alive, life”.  Her life (as well as all of ours) is a gift from God and we are held together by His grace.  We are planning on celebrating every day she is with us.  However long her life may be, we know God’s grace has been real.  None of us is immune from the effects of being born into a broken world.  Some bodies are crippled more than others.  Sin and sickness come from the curse.   But Christ’s redemption is greater than all our sin and we don’t want to give power to the curse.  Instead we want to celebrate the truth that in the end she will be with Him in victory.

Thank you in advance for your prayers and support.  We are blessed and grateful for the family and friends God has surrounded us with.

The Merry Family