“It’s not supposed to be this way…right??”

What does it mean to you when your world gets rocked? How do you react? Are you angry? Devastated? Maybe just numb? You could even be like me and experience all of those big feelings in a predictable, repetitive, and exhausting movie reel. Up until recently, I’ve had three such occasions where the floor has lurched beneath my feet, and I’ve fallen on my face. You know, the situation or moment where the image of life as you had planned it is irrevocably blown into ash. Whether or not I directly influenced these world-rocking experiences, I thought I was as low as I could possibly go each time they occurred. And yet, each experience has brought me lower still.

When I was young, I was very much in love with a boy until I wasn’t. Telling him I didn’t love him anymore, and I couldn’t marry him was the hardest thing I had done in my life at that point. Like any decision you make in life, it causes ripples and the effects were felt for months. Cold shoulders, hurtful gossip, and some really awkward encounters in my small town were a few of the mainstays for the months to come. During that period, I felt lonely and abandoned by friends and family alike. It was the most alone I had felt in my life. I thought I would rather disappear than keep going, and I naively thought that it was probably the worst thing that would happen to me. Yeah, I was 21 and knew nothing.

We had a perfect ultrasound at 8 weeks. The doctor told Ben and me that the baby looked amazing, and that we should tell our family and friends the great news. “After seeing a healthy heartbeat on ultrasound, the chance of miscarriage is only 1-3%.” We told our families. And then, four weeks later after our next appointment, we had to un-tell them because during that ultrasound my doctor said, “I’m so sorry, dear. I just don’t see a heartbeat. There is no heartbeat.” For unknown reasons, our baby died, and my body hadn’t realized it yet. I was still sick and throwing up because my body was supporting a baby that had died 2 weeks earlier. It could be another month before my body caught up with what we already knew; our baby was long gone. I remember being aware of a strange high-pitched noise. It took me a solid minute before I realized that it was me. I was the thing making the painful noise, because I was in inexplicable pain. We scheduled the procedure for the following morning, and I took a week off of work. The worst of the aftershocks came in the immediate weeks to follow although now and again, I feel the emptiness of that loss almost as acutely as I did that day.

“Her forehead is very prominent, and I feel the ridge you mentioned. We need a stat CT scan.” And there went my “peaceful” introduction to parenthood. Darcy was 5 weeks old, and at her first real well baby check-up when our pediatrician made the aforementioned statement. She was diagnosed with craniosynostosis less than 2 hours later, and we left the “well baby” appointment with a new appointment with a neurosurgeon in 2 days time. My beautiful baby girl was going to have her scalp peeled back, skull removed, bones cut into pieces, and then jigsaw-puzzled back together with plates and screws. It was devastating. I, like any new parent, felt like my daughter was beautiful and perfect, and yet I was hearing that her forehead was too prominent, head too narrow, and it was all caused by an eventually brain-damaging birth defect. Unless, that is, she got her skull cut into pieces and put back together in a better, less brain-damaging way.

This isn’t some cutesy post to tell you how much “God grew me through each scenario” and “How grateful I am.” Now, I AM grateful for these experiences, I did experience growth, but if there had been another way, I would have taken it. I would taken that other, easier, gentler way in a heartbeat. I have experienced deep and real and life-changing hurt in my life. Hurting or being hurt by others, experiencing great loss, or being given more than you can possibly handle isn’t some right of passage to get awarded a “Hey! You made it!” medal. I don’t really think God works like that. I do believe that God makes good out of bad. I know God makes good out of bad. I just don’t think he causes the bad. God didn’t turn everyone against me or abandon me. God didn’t take my baby. He didn’t “give” my daughter craniosynostosis, either. But He did bring beauty out of our suffering. He met me in my suffering, and when I felt like my world collapsed around me, He was unchanged. He was still good.

Romans 5:3-5 states, “Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

Now, I straight-up struggle with the “rejoice” part. Maybe when Jesus comes back and I’m all sanctified, I’ll rejoice at my past sufferings. But, I won’t be fully sanctified until Jesus comes back, so for this life-time, I’ll probably just have to be content to struggle with that. Anyway, throughout my life and my “big experiences,” I have grown in perseverance, and character, and hope. I’ve been blessed by such incredible people who have crawled down to my low, crumpled state and just loved me and stayed with me, especially when I felt utterly unlovable and unworthy. I have had the opportunity to offer comfort to other mamas who have experienced loss through miscarriage. I’ve been able to reach out to mamas of craniosynostosis babies and tell them that there is light and life on the other side of that scary diagnosis. It’s a goal of mine to reach and help as many as I can. In fact, 2 Corinthians 1:3-4 sums it up rather well, “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with comfort we ourselves have received from God.”

Because of my suffering, I can be a tool of God to help others who are suffering. I’m thankful for that. I’m thankful that I too can experience the comfort of those who have battled the “ugly” before I’ve had to. I’m thankful because I’m going to need their comfort in the weeks and months to come. Unfortunately, I’ve been given more than I can handle once again, and once again I’m scared and I’m angry and I’m numb. As you can see, I’m really not all that original in my feelings. One day, I wake up and I’m okayish and I think it will all be okayish. The next day, I’m a rollercoaster of all the big feelings. It’s actually annoying how regular my emotions are. Anyway, we’ve named our baby boy Clark Elliott Rayner. Baby Clark has some issues that have become apparent through our ultrasounds. While we don’t have all the answers yet, he has two ultrasound anomalies that make an underlying chromosomal abnormality more likely than not. Today, our new high-risk physician confirmed the findings; club foot and skull deformity. The skull deformity could be craniosynostosis, or maybe not. Our high risk doctor couldn’t say for sure. I won’t lie. It’s been very, very hard to hear that something is wrong…again. I am prayerful and hopeful that God will heal my baby. I know that He can. But I also know that He may not. He. May. Not. And that’s going to have to be okay. Ben and I have so many things to think about right now, and are learning as much as we can in an effort to anticipate Clark’s medical needs. I will update as I can. Until then, love to all. ❤️ 

2 thoughts on ““It’s not supposed to be this way…right??””

  1. You precious mama, you, Ben, Darcy and Clark are in my prayers and heart. Your faith is inspiring and I know that your blessings are proving your strength. So much love from St Jude.

    Like

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