charlie's song

Finally, We Know Why

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Last Monday, August 26th, 2013 was one of the most significant days of our lives. We can just tack it on to the most significant (read: painful, agonizing, overwhelming, sorrowful, breaking, devastating, impacting) year of our lives. I keep thinking about New Year’s 2014. I keep thinking, “What will it feel like to finally be able to say…We have made it to the end of the absolute worst year of our lives.

But it’s September right now, and January feels a million miles away.

And yet, Monday, was another big, big, big day.

To back up a little, I haven’t been blogging much lately, because it’s felt like a fight to simply survive. Beyond the usual soul misery of grieving the loss of two babies, I’ve been feeling absolutely miserable physically. I’ve been to so many doctors in the last eight months that I’ve become somewhat numb to the reality of living with a broken body. And, worse than that, I have felt like none of my doctors are really listening to me…no matter how loud I scream. Over the last few months I’ve had this picture in my head of me standing on one side of the ocean screaming for help at the top of my lungs…to my deaf doctors standing on the other side. I have not felt believed. I have not felt believed that something is wrong. I have not felt believed that (in spite of how common pregnancy loss is) it is not common to me. Especially when no one can give any sound explanation as to why. And in a moment when every single thing in my life feels broken beyond belief, it has been incredibly frustrating to feel minimized and not believed.

In spite of the fact that all of my blood tests keep coming back normal, my body is not acting like my body. I’ve seen so many doctors lately, that Freddo actually said to me, “Mommy, you can just go by yourself to the doctor’s appointment today. I’ll stay home and babysit Sophie.” Hmmm…now that’s a scary image. And such a sad picture of our lives. Even my kids know that something is deeply wrong with Mommy’s body.

Last Sunday, I reached a point of total despair as I thought about my upcoming appointments at four different doctors that week. I knew it would be more appointments where everyone would tell me I’m fine. But…I’m NOT fine. And, devastatingly, my babies are not fine. As I felt the panic and anxiety rising, I cried out to God again and again, “Please tell me what is wrong with me. Please give someone wisdom about my broken body!”

And then, out of the blue, I got a call from my family doctor on Monday. He’s been my doctor since I was born, and has been with me through countless childhood ailments and every season of life. (Think, Dr. Clarkson of Downton Abbey.) He lives 2,000 miles away and hasn’t seen me in five years, but my parents told him a little of what has been going on with me, and he new what was wrong. Immediately. I talked to him on the phone for five minutes, and all of my symptoms confirmed his suspicions, because in his decades upon decades of being a doctor, he has seen this several times. There is something, deeply, devestatingly wrong with my thyroid.

All week long I have been visiting doctors every day, taking blood tests until I feel like a heroin addict, and researching like crazy…and I have ALL OF the symptoms of serious thyroid dysfunction. Trouble keeping on weight, muscle and joint pain, hair loss, eczema, depression and anxiety, infections, brain fog, neck pain, ibs, pain in my liver, poor circulation, high cholesterol, low basal body temperature (mine’s a frigid 96.7 degrees), and most of all…fatigue. And all of these were even more true during pregnancy. I was so incredibly exhausted in the final weeks of Charlie’s life. And though I told my doctor how absolutely fatigued I was, since they are surrounded by pregnant women who complain constantly about being tired, and since the medical OBGYN community strangely knows almost nothing about thyroid disease, all THREE of my doctors dismissed the warning signs.

Warning signs that almost certainly cost my babies lives. I could weep as I tell you how many articles I’ve read about how even a mild thyroid dysfunction can cause miscarriage and stillbirth (including placental abruption) in otherwise healthy babies.

I may not even be able to finish this post, I ache so badly. But finally, it has a name. This nawing fear I have had to carry for the last eight months that despite what all of the doctors say…my baby did not just suddenly…die. Charlie died because something was deeply wrong with my body. And then, so did the next baby.

In the midst of this hard week, we have felt two main things. Regret and Relief.

Relief

Relief that, finally, we have a name. We have a word that gives more clarity to the catastrophic loss we have to live with every day. It doesn’t take away ANY of the pain of burying two babies. And though it cannot change the permanent devastation of the past, it does change how I feel about the future in so many ways. I’ve woken up every day for the last eight months terrified of another baby we so desperately wanted…dying in my body. Terrified that we will never know why. Terrified of the not knowing.

I feel like we have spent these last eight months living under a dark and constant shadow. The shadow of death. Death in the past. And fear of death in the future. So many people have encouraged us to have “hope” that we will one day have another baby. And their words have felt hollow, naive, and honestly, ridiculous…because we didn’t even know why our babies died. We were just told to “keep trying.” To basically, make a wish, blow out the candles, and keep doing the exact same things, with my exact same broken body…hoping to magically, get different results. That, by the way, IS the definition of insanity. And it has felt like insanity.

Though we still don’t know if we will ever again hold a living, breathing baby…we finally have a much clearer picture of the physical why. And it is such a relief to be free of the weight of the not knowing. It is such a relief to know that I am not crazy. And that my doctors, who have looked at me like I’m crazy, not only do not know everything…they actually know almost nothing about something that had such an effect on my body that it actually ended my babies lives. There has been so much anger and sorrow in this, but there has also been so much relief in the finally knowing.

Regret

Honestly, it’s a lot to process in our already broken state. Charlie would be eight months old this week. We would have found out this week if Baby Zeller is a little girl, or a baby boy. I will weep for the rest of my life, over the babies I had wanted here with me today. I will think, “If only we had known BEFORE Charlie died.” And then I will think, “If only we had know AFTER Charlie died.” “If only my doctors took the thyroid more seriously and did routine testing for these things.” “If only the medical community valued symptoms as much as they value blood results and testing.”

With the vision of hindsight, there were so many symptoms and warning signs of thyroid disease. All of my blood tests indicated I was fine, but doctors don’t do routine blood testing for thyroid disease. Especially not throughout a pregnancy, which is when both mother and baby are completely dependent on a healthy thyroid. Everyone kept telling me I was fine. And now we know that I was not fine. I am not fine. And it is so easy in these moments to say, “It could have been different.” “It would have been different.” My babies should have been here today.”

Could have. Should have. Would have. Some of the most dangerous and debilitating words in the English language.

But in the midst of regret that my doctors weren’t more knowledgeable, regret that the medical community doesn’t take the thyroid more seriously, regret that I was deeply sick and iodine deficient and didn’t even know it, and most of all, regret that our story has not gone differently…I do not want to loose perspective on God’s sovereignty.

I’ve been thinking all week about another email I received from John Piper the week after Charlie died. He gave me much needed perspective on the “could,” “should,” and “would” moments of our lives…

“You are right that “what if” and “could have” can kill you. Sometimes I think they are almost more destructive of peace and faith and hope and joy that “I blew it” or “it was my fault.” My own approach to these thoughts is to go to the root. And the root is: We don’t know. And God reigns.

We don’t know. You will drive yourself crazy and never find out what you might have done. “Jesus said: Which of you by being anxious can add a single cubit to his span of life?” The same thing works backward as forward.

And God reigns. Yes, you are right, God could have saved Charlie, and no matter what you did or didn’t do, we know what He choose for your baby.”

Piper’s words mean even more to me today. It is so easy to look backwards and feel overcome with regret and sorrow that something that even my doctors couldn’t see…was probably the physical cause of the end of our babies lives. It’s also so easy to look forwards in overwhelm and fear that that same something still ravages so many of the vital functions of my body. Right now, I am very sick. And scared. And overwelmed that we have come to yet another bend in this long road of suffering.

But I know that Jesus’s words remain. Still. Calm. Constant and Unchanged.

In the stormy sea of suffering that has become our new lives, there is Jesus. He stands on the boat, and says simply, “Peace, be still.” He stands on the boat and says to me today, “Can you Misty, by worrying (about the unbelievably sorrowful past, the physically and emotionally painful present, or the scary and unknown future) add a single hour to your or your babies lives?

No.

Because God holds life. God gives life. And God takes life away. He gave them to me. Charlie, for eight months. And Baby Zeller, for eight weeks. For however long He gives…God is still the Giver…of each and every life. We may finally know the physical cause…but we have always known the spiritual cause. We have always known that God is the ultimate Why. His sovereign plan, His glory, His eternal purposes, are the absolute, eternal Why.

Sometimes God choses to give us clarity as to the earthly Why. And sometimes God choses to hide clarity as to why. There isn’t a mother I know who wouldn’t long to know the physical reason why a baby, at any age, has died in her body. And, it is no small miracle after all of the doctors I have seen in 2013, that God would give wisdom to a doctor 2,000 miles away. It was God. God who hid. And God who, mercifully, eventually, gave.

I don’t want to give you the impression we are doing ok. We are far from ok. We are storm battered beyond belief. And clinging desperately to the picture Jesus gave us in that storm long ago. Clinging to the promise that Jesus stands calm, strong, compassionate, and sovereign. Big enough to calm a child…or to calm a wave.

As the water pours down.

As the waves crash up.

As the storm remains.

He remains.

(There are so many people in our lives who struggle with infertility and miscarriage, and though there are of course, many physical causes for those things, I really believe that this is a far underdiagnosed cause since millions of American’s have undiagnosed thyroid problems. If you’d like more information I have really appreciated this link- from a mom whose baby died because of a problem with her thyroid. http://hypothyroidmom.com.)

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2 thoughts on “Finally, We Know Why

  1. Hi Misty. I am so sorry for the grief that you are going through but completely understand on the throid issue. I saw many Dr.’s as well and they all told me I was fine but I knew I wasn’t. Finally one of them got smart and did a T4 test on my thyroid. Most only do the T3 test and it comes up normal but the T4 tests showed things weren’t right. Now, I have been on medication and am continually monitored every 6 months. I really hope they can get you on the right meds to help you feel better. My heart goes out to you.

    Joe Wickman’s wife; Kim

  2. I was just sent your blog by Andrea McConnell. You wrote this the day my third son died at 3 weeks old. We lost twins last year at 20 weeks who lived briefly.
    I have read several of your posts now and they truly touch my aching heart. Especially wanting a baby who outlives you. Yes. We have a little girl who is almost 4 and has dealt with nearly 2 years of me being so sick during pregnancy, of being at a doctor multiple times a week, of watching mommy grow big only to come home empty handed.
    So thank you for sharing your story. I’m going to follow and hope that God blesses us both with what we pray so hard for. And I’m so very, very glad you have an answer to move forward with, as hard as the answer is.
    Diana http://dianawrote.com

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