A new pilgrimage

It’s been a long time. This is no better proved than by the fact it took about ten tries to even get into this blog again. There were moments when I almost let this little piece of a former life go, but for some reason clung to the fact that someday I might return. The past two years have in no way been insignificant, but I never had the sense that the lessons and musings I was gathering were meant to be shared on a wider stage. There were times I would remark to Jeff about how much I missed writing, but I just sensed it wasn’t the season.

So why now? Why the return? This week, or more correctly, the past few months, has thrust our little family on a new and unexpected pilgrimage. I get the sense that we are standing on holy ground, and there is truly nothing that aids me better in noticing and observing the Father’s presence than writing. And I have never needed to know His presence more. I have also never been more keenly aware of my need to be supported by prayer and community, and this is one of the easiest ways for me to communicate with friends across the country and the globe without having to rehash stories that are painful to tell. And lastly, I want this record of my sweet second daughter’s life. It appears, barring a miraculous act of the Lord, that that life on this earth will be exceedingly brief. But I know that small and brief does not equate with insignificant, and I want to remember her. I want to remember these few months I’ve been given to enjoy her.

This Holy Week of Easter we sat in a genetic counselor’s office and heard the words no parent ever wants to hear. Incompatible with life. Terminal. Very, very little chance for survival. Words absorbed while little legs persistently and vigorously kicked inside me. But the story doesn’t begin in that office. It’s a long story, but so important in framing that day in that office. So I’m going to break all rules of blogging length and just tell you the whole thing.

As you can read in the account of my first daughter Eliana’s naming below, the timing of her arrival was clearly initiated by the Lord. As Jeff and I talked about bringing another child into our family, we wanted the same assurance that the timing was not just ours but the Lord’s. We both had a strong desire for children close together in age – close enough to hopefully be friends and companions. We settled on two years as the ideal age. I was leading a Perspectives class this spring, and knowing it would be hard to bring a baby into this world in the midst of that, it seemed like a late spring/early summer baby would be the best for our family. With Eliana, we had barely decided to start trying before those two lines turned up, so we figured things would likely happen fairly quickly again. A couple months passed. The planner in me began to fret. We wanted the kids to be able to be two years apart in school. If that was going to happen, there were not many months left to get that positive test. One late October with prayers and bated breath I took a test again. I waited a minute or so. One line. Set the test down on the counter and crawled back in bed with tears in my eyes to tell Jeff it was negative once again. It was a couple hours later when I went to throw the test in the trash that I looked down in shock to see two very distinct pink lines. Oh the joy that washed over. Our dreams and our plans were going to come true! I reveled that day in our family trip to the market and our walk through fall leaves, imagining one more child with us next year.

Those dreams came crashing down just a week later. At the time, it seemed like one of the darker days of my life. Jeff was across the country on a business trip. We had painters in the house painting our trim and very tall foyer. On that day they were working on painting our doors. Which meant we didn’t have a single door in our house. I woke up and there was a little bit of blood. I immediately texted a friend who is a doctor and she reassured me that a little could be quite normal. But as that continued over the next couple hours, I began to fear that this child was not going to be ours to keep. As the day wore on, fear gave rise to certainty that we had lost the baby. My husband gone across the country, strangers in the house with no doors on any of the rooms, I remember crouching in the corner of our master closet below Jeff’s dress shirts sobbing on the phone with my sister. It was a dark day.

That Sunday I decided to stay home from church. I knew how many pregnant bellies I would encounter there and it was all too fresh and new. Jeff and Eliana headed to church, and I pulled out my journal and bible. And the Lord met me so sweetly that day. In a matter of hours he tenderly took me from devastated to grieving with hope. When Jeff got home, we headed out on a walk. We climbed the hill in our neighborhood, slowly gaining a better view of the beautiful valley we call home. As we turned back towards our home, we were greeted with the most stunning rainbow I have ever seen. There wasn’t a rain cloud in sight. Just a beautiful blue sky with white puffy clouds…and a magnificent full arc of color. I felt like that rainbow had been put there just for me. Yet another reassurance that God was good, that God was present, that His plans were prevailing and would prevail. That evening as we sat down to dinner with our neighbors, talking about our recent loss with those who had walked that road, my neighbor said you will have another child. That won’t erase this pain, but you will. They call that baby your rainbow baby. The meaning was not lost on me.

Knowing we’d have to get pregnant right away to meet our “two years apart in school,” Jeff and I both reached a place of surrender that our plans are not the Lord’s and He knew the right timing. Two years wasn’t that big of a deal, right? A month later we were preparing to head to Seattle for a night without our toddler. Knowing we’d be going to a fancy dinner (hence wine) and that our hotel room included a bottle of champagne, I decided to take a pregnancy test, just in case. Those two lines almost immediately showed up and I sat in shock in the bathroom. Could it really be? Was the Lord answering our desire for that two year window? This time there was excitement and joy…and fear. It was so soon. I didn’t think I could bear another loss so soon if something happened. That morning, as I was running errands I came out of a store to see before me an enormous full arc rainbow stretching across the city. Once again I felt the Lord’s call to trust.

But those weeks before our first appointment were so hard. Every time I went to the bathroom I’d feel my body tense up in the fear of there being blood again. But we passed the day where we lost the last baby. And we made it to that appointment. I expressed my concern to the nurse practitioner we were meeting with, and she graciously did an ultrasound right there so I could see the beautiful flutter of our child’s heart. She even let me video it. And so fear began to subside some. I knew that once you see a heartbeat, your chance for miscarriage rapidly declines. But I still waited a bit anxiously to make it through the first trimester. Twelve weeks and we headed in to hear once again the beautiful thud of a heart. The nurse practitioner reassured us that we could breathe a little easier.

At sixteen weeks I returned again to hear that miraculous little pounding heart. I knew anatomy scans were usually done at twenty weeks, but I asked my OB if we could possibly do ours at 18.5 weeks. Jeff and I were heading off on a babymoon. We thought it would be fun to do the scan right before, have the tech write the gender on the card, and then open it when we got to the Oregon coast. I love a good story, and I relished being able to take this child back to the location to tell her the story. Plus it would be a great backdrop for a gender reveal photo. My OB loved the idea and said it should be fine to do the scan then. If they weren’t able to check everything off the list, we would just go back for another scan.

We were excited to find out if we were adding a brother or sister to the mix. Little did we know that gender was going to be the last thing on our minds after that scan. However, (you may call it a mother’s intuition, I might call it the Spirit’s prodding), the week leading up to the ultrasound I felt compelled to pray repeatedly that whatever we saw on that scan, we would yet praise the Lord. I distinctly remember the night before rocking Eliana and praying with her and asking that whatever was revealed the next day, we would still trust and praise the Lord.

It was a glorious spring morning, full of buds and promise, when we drove to the ultrasound. The scan started exactly as we expected. There was that beautiful heart flutter. We looked at the brain first, “Everything looks good!” proclaimed the cheerful tech. But as we moved onto the limbs there was a turn in the mood of the room. The tech became more reserved. I could see the numbers on the screen not lining up. We were 18 weeks 3 days. Everything had been reading about that time. Her legs were reading at only 16 weeks. How big of a deal is two weeks difference? The tech was reticent to give us any kind of an answer. Instead she asked how soon I was seeing my doctor. Not for two weeks. Well, she’ll call you to discuss if there are any issues.

We walked out of the office and I was, well, panicked might be the most appropriate word. Immediately we did what I knew we shouldn’t do but couldn’t help doing…we googled the problem. As potential causes showed up on the phone, I knew I couldn’t sit around and wait for the doctor (who I knew wasn’t in that day) to call me. By the Lord’s grace, a dear friend is a radiologist in the valley. I texted asking if he read scans from the women’s health department, and when he said yes I asked him to watch for my scan. He graciously offered to read it and call me afterwards. I cannot express to you what a gift it was that it was a friend who called around lunch that day to discuss the concerns. Top of the list were Down’s and other forms of trisomy. There could be other rarer syndromes as well, or perhaps the read just wasn’t that good and she was just going to be short of stature…but that outcome was not likely. He told me he’d talk to my OB and she’d be in touch about how to proceed. We immediately texted close friends to pray, and I tried to pull myself together enough to lead Perspectives that night.

The next morning, we got in the car to drive to the Oregon coast. The mood of the trip had changed from fun and romance to, I need to go sit with Jesus and my husband to process all of this. About ten minutes from our destination, we got the call from my OB. She told us mostly what we had heard the day before, and asked if I could come in for a blood test for chromosomal abnormalities. Remarkably in this day and age, they can test the baby’s DNA from the mother’s blood. We told her we had just left town, and she reassured us that that was fine and I could just come in when we got back.

Those six days were such a gift to Jeff and I. We cried. Well, let me correct that. I cried. A lot. We processed how this would affect our family. We talked through fears. We talked through the possibility that we might have a child who would live with us the rest of our lives…oh looking back what a gift that would be. Peace descended. Peace that can only be given from the Lord. We both returned to Wenatchee with such a strong sense of peace regardless of the diagnosis. We had (and still have) the unshakeable sense that the Lord had created this child, that He does all things well, and that He had chosen this child for us.

I had blood drawn first thing Monday morning and set about the week wait for results. I honestly (and those who know me will realize the miracle in this) was not anxious that week. I wanted to know what was going on with our little girl, but I knew and trusted the one who had created her. The following Monday I got the call from my OB’s nurse. The results came back normal. Strangely enough it wasn’t relief that flooded over me. I did wonder what the Lord was up to, if this child was going to be healthy, and if He was instead using her to prepare our hearts for another child…perhaps adopted?…in the future. Maybe those little limbs just meant she’s going to be small. Maybe we just didn’t get a good measurement.

Our OB though had scheduled an appointment for us at the University of Washington over in Seattle to give us more detailed information. We had an appointment with our OB on Wednesday where we talked through what that day at the UW would look like. About the possibility of an amniocentesis and why they might suggest that. The genetic blood test we had taken only ruled out the three most common forms of Trisomy, so there could still be a chromosomal issue. She expressed her hope that maybe they would just send us back saying everything looked good. At our last scan, they hadn’t gotten a good look at our baby’s heart, so that in particular was going to be a revealing piece of information.

Early Thursday morning, Jeff and I made the three hour drive over to the UW. As we entered Seattle, low and behold, what was there to greet us? A rainbow arched across the sky. The Lord is present. First appointment of the day was the ultrasound. The tech slowly checked off the anatomy list…kidneys, stomach, brain…all looking good. She took lots of pictures of the heart. From lots of angles. And then onto the limbs. Maybe they won’t measure as short…I watched intently for the numbers on the screen. 17 weeks. We were now 21 weeks into the pregnancy. Her limbs were now four weeks behind in development. Rushing through my mind was, but it’s just the limbs. Look at her, she’s twirling and obstinately twisting away from the tech. Her legs are short but her kicks are mighty. The tech even commented how shocking it was that you could feel her kicks from the outside at this early in the pregnancy. All I could think is, that’s my girl. That’s my strong girl. Way to show off the power in those little limbs. The tech left the room to go talk to the perinatologist to see if the doctor wanted anymore images. Jeff, who had been researching all sorts of possible diagnoses in the previous weeks immediately turned to me and said, I think it’s dwarfism. To me that came almost as a relief. Sure there would be challenges, but we could do this. We could raise a little person. As we waited we talked about what that might look like for our family. The tech came back and announced they had enough images. And there was that turn, that increased reticence again. The doctor has a good idea of what’s going on. You’ll talk to her later today. We walked away thinking, well at least we’ll get some information, that’s good right?

Two hours later, the genetic counselor called us back. My only thought was, wow, she’s so young. She’s got to be quite a bit younger than us. She sat us down in a small office, with a clipboard of our chart neatly placed in front of her. And then she asked us, what do you know about what’s going on with baby? What do you think it might be? Jeff dutifully answered and gave his guesses while I sat there wondering, why does it matter what we think and why don’t you just tell us what’s going on? When Jeff finished, she took a breath and then stated, your baby is not doing well. Or were the words, your baby is really struggling? I can’t remember. What I do remember is those words hitting me like a semi-truck. I wanted to cry out, how is that possible? We just watched her perform a gymnastics show. Right now she’s vigorously kicking me. She is full of life. The next moments are somewhat of a blur. But the problem suddenly went from limbs that were short to a chest cavity that was extremely small. Meaning the heart took up a good portion. Meaning lungs can’t develop. Meaning our baby is terminal. Incompatible with life. She will not be able to breathe on her own. So many ways to describe and make clear that this was not going to end well. I didn’t know if I’d be able to breathe on my own. I stared at the wall and the ugly strip of wallpaper border that annoyingly did not wrap around the whole room. The tears started to flow and she asked if we wanted a few minutes alone before we talked about what comes next.

When she returned, she was the first to bring up the fact that since this is a terminal diagnosis, many parents choose to terminate. We made it clear that we would not be doing that. There were other discussions about tests, an annoying family history tree we had to fill out, and then a wait to talk to the doctors. The first doctor painstakingly explained the diagnosis again. She won’t be able to breathe outside of you. We asked the questions no parent wants to ask, how long might we have with her? Are we talking seconds? Minutes? What has happened with other babies with this condition? Well, personally I haven’t seen any babies born with this condition was her reply. Does this mean she will likely not survive to full term? No, she could very well survive to full term, she can breathe just fine inside you, but all the other couples I’ve personally worked with have chosen to terminate. I stared at the floor. As if stubbornly defending her existence, my baby girl gave me a good kick.

What followed were discussions and questions of what the road to come looks like…many of those questions still to be answered, and a conversation with another doctor who clearly could not understand why we would choose not to terminate and pointedly thought this was not the correct decision. And so stunned and shaken and grieving, we walked out of the hospital for the long drive home. I kept telling myself, willing my heart and mind to believe, Jesus has not changed. Jesus has not changed. My God is good. My God is present.

This was Maunday Thursday. That night…all I can say is the Lord gave me a glimpse of the excruciating prayer in Gethsemane by a man for whom sleep was not possible, and who fought the battle to accept the cup being given to Him.

And so we begin a pilgrimage through the darkness of Good Friday days. But I am so thankful that we walk these days with the promise of Easter. And with one well acquainted with sorrow. Will you join us? Will you pray with and for us? Will you walk the tension between celebrating the days we are given with this child, while grieving likely losing one we love so much sooner than we would choose? We cannot adequately express our appreciation and gratitude for those standing beside us on this difficult journey ahead.