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…