When Control Goes Out the Window…

It may come as a surprise to you that I am somewhat of a control freak.  Just kidding.  I know you’re not surprised at all.

I like being in charge of my days.  It’s good to know that I can control with a clock what time I wake up.  I like knowing I can choose what I want for breakfast.  I can decide whether to wash my whites in hot or cold and whether or not to use bleach.  I decided whom I would marry (quite a catch, too, I might add).  I chose what I’m wearing today, which isn’t the best outfit in the world, but it’s not my go-to of yoga pants and a long shirt, so I’m feeling pretty good. 😉

I like being able to have little pieces of control over my day because in the big scheme of life, I really DON’T have a lot of control.  While I can tell my kids to pick up their rooms, they can choose whether or not to actually do it (and enjoy the reward or consequence of their decision).  I can choose to stop at the red light, but the person behind me might decide I should’ve run it and plow into the back of my car, causing my choice of stopping to be irrelevant.  Do you see where I’m going with this?  We can make good choices, but there are other factors in the world that can make our lives seem out of control.  Have you felt like that?

For the past several weeks my family and I have been reeling with ache over something that is completely out of our control.  Back in December my husband and I learned that we were expecting a bonus baby.  This little one was not on our radar, but after the shock wore off, we began to think of what life would be like for our family with a 6th child.  Panic set in when we realized all the change that would need to take place (“need” being a relative term, but go with me on this).  We’d need to move. There isn’t room for a crib in our already cramped quarters!  We’d need another vehicle… ours only seats 7!  How would we pay for college and another wedding?  Oh gosh, the dollar signs were flashing everywhere and I began praying for a financial miracle.  When I should’ve been relishing in the fact that a new life was growing within my womb, I was instead challenging God, saying, “How are you going to make this work?!” because I couldn’t see the outcome and freaking out sometimes feels good, in a sick sort of way.

Fast forward a couple weeks to the first appointment, where we were given a dating ultrasound to determine when baby would be due.  We weren’t too sure because we didn’t actually think it was possible to get pregnant when I did, so we needed some help to figure out the dates.

Before I go on, you should know a little about my OB.  He is a very stoic, quiet man.  He has a poker face that would confuse even the best players in the world.  But I have made an art of reading people.  As an INFJ, I study expressions and try to understand a person’s emotions so I can know them better.  It’s who I am.

Back to the point… I had a weird feeling about this pregnancy from the get-go.  Perhaps because it rocked my boat from the time I first saw the “+” sign on the stick, or maybe because of mother’s intuition, I thought to myself, “I’m going to watch his face instead of the screen.”  So I did.  He put on his poker face.

He found the heartbeat and estimated that baby was about 8 weeks old.  He said, “Congratulations” and told me to come back in 2 weeks for the nuchal fold screening, which he recommends for moms over 35. And he didn’t make eye contact after that.

I left the appointment feeling really unsettled and called my friend and sister to tell them so, almost like I needed to start documenting this pregnancy.

That night I began bleeding heavily.  I thought I was miscarrying, but I didn’t.  I could’ve gone in the next day for another ultrasound, but I just thought, “what’s the point?” and moved on, waiting until the 10 week appointment.

At the 10 week appointment, the OB found baby via ultrasound.  Strong heartbeat. Fingers and toes moving. Giant bubble behind her head, stretching to her tailbone. Something was wrong.

I have seen enough ultrasounds throughout my career as a mother to know what looks normal and what doesn’t.  There was something very wrong with my baby.  My doc said, “I am so sorry.  It appears your baby has what is called a “Cystic Hygroma” on the back of the head.  This typically indicates a major chromosomal abnormality.  I’d like to send you to Maternal Fetal Medicine for more tests.  I am so sorry.”

I was numb.  I knew something was wrong in my gut and now it was confirmed. What was I supposed to feel? Should I detach myself emotionally? After all, I’m only 10 weeks along.  I’d miscarried before so maybe it’d be different now that I have 5 other kids and my heart is already full… right?

The specialist at Maternal Fetal Medicine, a wonderful doctor who we’ve worked with for 4 of our other 5 pregnancies, confirmed the diagnosis.  He suspected that baby has Turner Syndrome, which afflicts only girls and is fatal in-utero 99.7% of the time. Of the .3% of girls who survive pregnancy, most go on to do quite well, but they have to make it through pregnancy first.

Point three percent. Thirty percent of a percent.

Dr. Case did a more thorough examination and, based on what he saw, told me that he expected I’d miscarry in the next 2 weeks.  He gave me a 50% chance.  The 2 weeks have come and gone.

At 12 weeks I had a massive bleed that made me think I was miscarrying.  By massive, I am not exaggerating.  I am now on iron supplements to help get me back to normal. There was no reason for us to expect baby girl was still with us, but when I went into the doctor again, there she was on the screen, strong heartbeat and kicking around.  I was dumbstruck.  I even gasped, “WHAT?! She’s still in there?!” The emotional roller coaster we had been on for the past 7 weeks was starting to get to me.  We went from “We’re pregnant?!” to “We’re pregnant!” to “She’s won’t make it” to “She’s still there!” to “She’s gone.” to “She’s fighting so hard.” to “She could go ANY. DAY.”

No control. I have no control over the outcome of my daughter’s life.  I cannot will her to survive.  I cannot fix her brokenness.  I cannot do anything for her other than hand over her life and mine to the Creator of life and entrust her to Him.  She belongs to Him anyway.  He loves her more strongly than I ever can or could, regardless of whether she makes it or not.

So we wait.  We wait to see how many days or months I get to have her life in mine.  It may be a day.  It may be 3 weeks.  I might deliver her at 30 weeks, only to watch her pass away in my arms minutes later.  I. Have. No. Control. 

Other than this:  She has been entrusted to my care for a limited number of days. I will not control those days for her.  I will not take away her chance, even if it’s just .3%, at life.  That is not my right.  Even if this journey with her breaks my heart in ways I find unfathomable and excruciating to me, I will give her whatever chance I can at making it.  Because I love her.

That is how Jesus feels about you and me.  

Even the most excruciating physical and emotional pain could not make Him choose Himself over you.  That is a love that is earth-shattering and game-changing.  You are loved like that and you might not even know it.

Every day that our little one grows in my womb, fighting the ridiculously bad odds she’s been given, I am reminded that I too, was given a death sentence. I was born into a world that was broken. My destiny was one of eternal suffering and pain.

But Jesus.

Jesus stepped in and said, “I will take her place. I love her.” He died that I might have life and have it to the full.  Life everlasting.  Love everlasting.  Hope everlasting and hope unfailing.  There is no greater love than that and right now that love is more real than I’ve ever known it to be.

I beg of you, if you have not considered Him before, please consider Jesus now.  Please.  One thing I have learned through this journey with our daughter that life is fleeting.  It can be gone in an instant and my heart aches at the thought of another person not knowing the depth of the love of Christ for them.

Friends, we may not have control over some things in life, but we do have control of our eternity.  Jesus loves you.  Choose Him.  Choose life.  Please.  Because in Him alone is the hope which we all seek and it is a hope that lasts forever.

Her name is Phoebe.  And we trust that, whatever the outcome, Jesus loves her too.


8 thoughts on “When Control Goes Out the Window…

  1. Tammy says:

    Another “ya-da-ya-da” huh?! So happy for you…and so feeling your pain. You continue to amaze me as a mom & as a follower. God is working in you & through you! Sending you hugs & prayers.

    Liked by 1 person

  2. prayingformyrainbow says:

    As a mother who has lost a child, I pray that your sweet baby girl beats these odds. My heart breaks for what you are going through. I pray that you get as much time with her as God is willing. You were such an inspiration and support to me in my darkest hour after I lost Anneliese. Know that I am here for you now that you travel this road too. I will be praying for your family.

    Liked by 1 person

  3. Grace Kim says:

    You’re so brave for sharing your story! I’m so sorry that you and your family are going through these trying times, but I know that God is right there with you, looking over you and precious Phoebe. Love you and continuing to pray for you!

    Liked by 1 person

    • Summer Wilson says:

      Thank you so much for your prayers, Erika. We covet every single voice of intercession that we can get. I agree, the situation itself is far less than ideal, but I don’t think it’s “unfair”. Who am I that I deserve a healthy baby over anyone else? I was just reading this morning in John about the blind man and those who said, “Who sinned, this man or his parents, that he should be born blind?” to which Jesus replied, “Neither this man nor his parents sinned, but it was so the works of God might be displayed in Him.” –John 9:2-3. I am praying with all of my might that the works of God be displayed through Phoebe, whether it be through her physical healing or through my response. God is good, as is His plan, no matter what pains may come here on earth. And there are indeed many, many pains. But He is faithful and able to take the ashes and turn them into something so beautiful that all of mankind will be left in awe of Him.


  4. Robyn says:

    Congratulations, Summer!!! Wow, what a roller coaster you have been on!! My heart hurts for what you are going through. I’m praying for you and your little girl. ❤️❤️ I’m so glad we can trust God. He is faithfully guiding you and your little girl!


  5. Jodi Powell says:

    Thank you for sharing, for being brave & honest. I am praying for you, your precious baby girl & your sweet family.


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