You hear people talk about getting the phone call. The one that brings the unexpected, takes your breath away, and changes everything. Ours came first thing on a Tuesday morning. “I’m calling to give you your test results. The doctor wants you to see a specialist because your quad screen came back positive for Down Syndrome.” She went on to tell me that this is only a screening test and not a definitive one, but that further ultrasounds, testing, or an amniocentesis would tell us for sure. She ended with, “There is no cause to be alarmed”.
I took Elizabeth to preschool, came back home, got in bed, and literally and figuratively pulled the covers back over my head. It was only 9am. I couldn’t bear the thought of calling Ryan at work and telling him. At some point I got up and emailed my 3 best girlfriends. And then I got back in bed- where I stayed until it was time to go pick up Elizabeth at 3:30pm.
To say that the last week has been a roller coaster is an understatement. I never knew a person could feel so many emotions at one time: trust, fear, love, confusion, despair, hope, depression, excitement. Overwhelmed. Vulnerable. By Saturday night I felt BEAT DOWN. I was feeling every negative emotion you could possibly think of. And I lay my head in Ryan’s lap and said, “I don’t understand how I can feel all these horrible things and yet really know in my heart that everything is going to be OK.”
I’m not a numbers gal, but suddenly all sorts of numbers were swimming around in my brain:
- Quad screen results are given as a probability, such as a 1 in 5,000 risk of carrying a baby who has Down Syndrome. Generally, the test is considered positive if the risk is 1 in 250 to 1 in 300. (from the mayoclinic.com)
- My blood work shows my personal odds are 1/115.
- The quad screen correctly identifies about 80% of women who are carrying a baby with Down syndrome.
- About 5% of women have a false-positive result, meaning that the test result is positive, but the baby doesn’t actually have Down syndrome.
- The only definitive test for Downs is an amniocentesis, which carries a risk of miscarriage for 1 in 300 to 1 in 500.
- There is a 90-95% abortion rate for unborn babies with Down Syndrome.
- There is 50% chance a baby with Downs will be born with a heart defect.
Here’s the truth. These numbers mean next to nothing to you when it’s you they’re talking about. When it’s your baby. I cannot count the number of times I’ve been told in the last week by well-meaning people that I deeply love and adore, about the “high false positive rate”. Seems like nearly everyone knows somebody who had a false positive. It’s their sister, their cousin, their coworker, this girl from church, somebody they went to high school with. I know they love me, and they’re trying to make me feel better. And honestly, the first couple of people who told me- I found that helpful. Because I didn’t know. I knew next to nothing about this “quad screen” I took. But, it’s been a week now. And hearing about the false positives no longer feels helpful. It feels awful. Because the truth is, everyone seems to know someone that had this experience. But not one single person has looked in my eyes and said, “I know exactly how you feel. I got a positive on that test, but it turned out to be a false positive.” In fact, the only person who has been able to do that- well, folks, hers wasn’t a false positive. And only the Lord knows how much I’ve needed her this week. At some point this week, I thought, "Am I just nuts? Should I just be like- oh, there's a high false positive rate, so this must have just been a false positive, let me go bebop along and quit worrying about it. it's probably no biggie!" Um...impossible to do when it's your baby your talking about. Just impossible.
Some of the strangest things have been helpful. That’s been one of the funny things about this week- to see how Ryan and I process things so very differently, and even need such different things from our friends. For example, here are some of the things my friends have said to me this week, “I know it sounds crazy, but I’m jealous. Jealous of this amazing work the Lord is doing and will be doing in your life through this.” Or “I want to tell you everything’s going to be fine. And it really will. It really will be fine.” Or “I’m so excited for you guys”. Note: I do not suggest saying these sorts of things to anybody unless they know your heart intimately. But for me, there have not been more life-giving words. I’ve also discovered that I like my closest friends to be a bit pushy. Becky pushed me to email Emily before I felt I was ready. She took matters into her own hands, and Ryan’s immediate reaction was annoyance. “Why does she have to be so pushy?” “Because she knows me. And that’s what I love about her. And while that’s not what you want from your best friends, that is what I need from mine.”
So we were told to see a specialist, and I called the first one recommended. The lady on the other end asked me if I wanted these tests so that I could decide on “termination”. Oh, yes she did. It made zero sense at the time, but once I saw the numbers of people who choose to murder their child once they know it has Down Syndrome, it made sense. Lord Jesus. Turns out that doctor doesn’t take our insurance, so we tracked down another one that does. Our appointment is this Wednesday. They’ll be looking for certain “markers” for Down Syndrome during the ultrasound. They might find them. They might not. And either way, it could mean nothing at all. Because the only definitive test is amniocentesis. Which we won’t be doing. I’ve had a miscarriage, and I cannot imagine putting myself, my husband, or this baby through that. I know the risk isn’t HIGH, but it’s there, so no thank you very much. Look, I don’t judge women who choose to get the amnio (unless they’re doing it to decide on “termination”, in which case, let’s be honest, I judge the hell out of them). I just know me. And if there is the tiniest chance that my need to satisfy my own curiosity would cause me to lose this baby- with Downs or without- I don’t know how I’d ever get out of bed again. So, chances are good that we may not really know the story with this baby until he or she is in our arms in 5 months.
I saw a woman on Sunday at Café Express wearing some kind of “I’m a proud atheist” t-shirt. And I just wanted to tell her, “Oh, sweetheart. I hate to tell you this, but you have no idea what you’re missing.” Because, here’s the deal: I would have never made it through this week without Jesus. And not in the rah-rah, “I go to church twice a week every week” sort of way. Let’s face it, sometimes- too many times, that IS how it is. But this week, it’s been, “Jesus, I’m about to have to get out of this bed, and I just don’t know how I’m going to do it.” Ryan and I have been through a number of fairly serious trials in the last 7 and a half years of our marriage. But I have never felt Jesus closer, nearer, sweeter- than He has been this week. Truly. Through the fear, there has been Trust. Through the confusion, there has been Clarity. In the darkest places of my heart, there has been Light. In the despair, there has also been Hope. Sure, this might be a “false positive”. Our baby might be born completely “normal”. We will rejoice and our lives will be filled with hope, love, and happiness to add this little one to our family. Or, as in 95% of the cases, this test might have gotten it right. And our baby might be born with Down Syndrome. And we will rejoice and our lives will be filled with hope, love, and happiness to add this little one to our family. Because, as Erin said to me the very first day, “I want to tell you everything’s going to be fine. And it really will. It really will be fine.” Here at the end of this seemingly terrible week, I can honestly say that even if this baby doesn’t have Downs, I wouldn’t trade this week for anything. Not anything at all. I am so thankful. Thankful for my friends, for our sweet families, for our church. Thankful for new friends. So very thankful for my husband- thankful that he feels so deeply & speaks so openly and honestly. I know he doesn't look like it from the outside- but that man is pure sugar. Nothing but sweetness, and the longer I know him, the deeper I love him. And I'm so thankful for this week's reminder of how our Savior longs for His heart to be intimately entwined with ours. And of course, I'm unspeakably thankful for this new addition to our family.
So, Ryan and I process things differently. I try to read him things that I find on blogs that speak to me- things I find tremendously helpful. And bless him, that’s just not how he processes. Blogs are not his love language. ;) But they are mine. So, can I introduce you to my 3 favorite new blogs? (just click on each one to go visit them)
The Fun House
Noah’s Dad
Enjoying the Small Things
Let me tell you, these parents of little ones with Down Syndrome- they've been life lines for me this week. The pictures, videos, and stories about Seth, Noah, and Nella have filled my heart with joy, and given me such hope. I'm so grateful for these moms & dads and their willingness to be open and honest and real and vulnerable.
Another one of my fave ways to process is through music. Can I share my current top 3 favorite songs with you? The ones that are on repeat at my house this week?
1. Have Your Way (Britt Nichole)-
You never said the road would be easy,
but You said that You would never leave.
and You never promised that this life wasn’t hard,
but You promised You’d take care of me.
so, I’ll stop searching for the answers,
I’ll stop praying for an escape,
and I’ll trust you, God, with where I am,
and believe that You will have your way…
even if my dreams have died,
and even if I don’t survive,
I’ll still worship You will all my life
2. Blessings (Laura Story)-
we pray for blessings, we pray for peace
comfort for family, protection while we sleep
we pray for healing, for prosperity
we pray for Your mighty hand to ease our suffering
all the while You hear each spoken need
yet love us way too much to give us lesser things
‘cause what if Your blessings come through raindrops
what if Your healing comes through tears?
what if a thousand sleepless nights
are what it takes to know You’re near?
what if trials of this life
are Your mercies in disguise?
And my ultimate favorite this week:
3. Your Hands (JJ Heller)-
I have unanswered prayers
I have trouble I wish wasn’t there
and I have asked a thousand ways
that You would take my pain away
when my world is shaking
heaven stands
when my heart is breaking
I never leave Your hands
Oh sweet ones. I am so thankful for you. For your willingness to read these rambling thoughts of mine. Thankful for your prayers and your encouragement. I just love you all to pieces.
