Third Pregnancy as told by Amy

This marks my FOURTH attempt at writing about this pregnancy. It has taken me a long time to realize I just don’t want to write about the hard. I don’t want to spend pages and pages trying to articulate what it has been like for me, or trying to make all the things that have happened make sense. I don’t want to go through a chronological account of how things happened and what they mean. Maybe someday that will be a beneficial thing to share so I get far less questions about when this will end, but right now I just don’t want to focus my energy on doing that. Maybe it’s because I know it will never fully be understood and I could never really do the full scope of the experience justice. Maybe it’s because I don’t want to invoke sympathy and maybe it’s just because the hard parts are not the full story as I see it. And probably, it’s that it’s still a little tender and raw and requires too much vulnerability on my part.

Of course it would be inaccurate to pretend it hasn’t been hard. There’s been fears, deep loneliness and feelings of abandonment, sadness, exhaustion, anger, and a lot of just pressing onward.

But there have also been moments of stillness, clarity, peace, and rescue.

I will be honest that when laid out in front of me the hard moments far surpass the amount of peaceful ones, but the hard has always, at least in increments, passed. The thing about the peaceful moments is though that specific moment may come to a close you can reach back and draw from it as much as you need to. So though they have been fewer and far between, they have been enough – albeit sometimes JUST enough – their weight does seem to be heavier.

So as I have reflected on this experience over and over again and what I do want to share, I have just gathered some thoughts about what I want my new baby boy to know about what it was like when his momma carried him and all he did for me:

I feel I began this pregnancy as one person, and am walking out of it another. Motherhood does this to us often, transforms us in ways we otherwise couldn’t have transformed. My baby boy has already allowed me to grow and be stretched so much – and we haven’t yet met. It makes me excited to be his mom and to carry the lessons he’s taught me forward into raising him and my other children.

My first very stark lesson learned: We are wildly not in control of our bodies. We pretend we are, and we even take pride in all we are doing to not be THAT person. But truthfully we don’t really get a major say in what pops up physically for us.

I have also once again become very acquainted with consistent prayer thanks to this pregnancy. After my seizures it often takes me time to re-coordinate my thoughts with the physical act of speaking. Because my seizures often occur in clusters, this means I  have a moment where I “come back” to awareness and am able to hear things, but can’t yet say anything and then fall back into a seizure. This perspective has allowed me to witness my husband’s moment of surrender. There have been many times I have been able to hear him cry, and heard him ask for help, but I can’t respond and I know my seizures aren’t yet done. These moments have been extremely hard for me. In those moments all I have had is quick but sincere prayers to rely on that he will be comforted, and I have also been able to witness the unique ways he has received such comfort.

I did experience my moment of surrender as well. The moment where I knew physically I couldn’t carry myself further and wished I could quit, and I don’t know that I’ve ever experienced anything like this before. I didn’t feel immediately rescued, and truthfully some days I still wish I had been rescued in all the ways I want to, but it did come. The understanding and the peace came though the physical trial didn’t end. The answers I didn’t know I wanted came and allowed me to find some wholeness in the empty. This is probably my favorite lesson I have been given. I am positive I have far more to learn about rescue, but the insight it has given me into true strength and true weakness, and the ability we have to be made strong within the weak has been profound. I feel I comprehend my relationship and my need for God in my life so much more than I did before, and I feel deeply grateful for the need to surrender.

I really want my little baby boy to know that though there were times I wrestled with it all, I knew, and still know he is worth it. I want him to know I drew strength in the fact that while it often felt like my body was experiencing total system failure it was also simultaneously creating a new body for him and allowing a new life to enter into my world and that’s nothing short of miraculous. In fact I consider that something to be proud of.

I want him to know that while I felt picked on and sometimes quite literally begged for rescue I also felt blessed that I have the ability to even do this, to carry a baby, one last time.

I want him to know his brother and sister have been consistently and ridiculously excited to meet him since the beginning. That Camden can’t WAIT to have a little brother and Kyra is positive he’s going to be “sooooo cute”. That Kyra often asks me to uncover my belly so she can sing him twinkle twinkle little star and then tells me she thinks he loves her. I want him to know that his big brother dreams of helping him learn all about cars, legos, and running fast.

I want him to know that his momma fought so hard to get to the finish line — not just so it would be over — but also because I knew holding him would make it all make sense and make it all okay.

I do of course want him to know it was hard, but that all the hard seems to have had a purpose. I’ve honestly never felt such deep emptiness. But in my emptiness I have truly found a peace.

To do so, I have had to learn to let go of so many little things. Sources of identify, sources of self worth, expectations, and so on. I’ve had to lower the bar for myself, lower it again, and then just accept that the bar needed to rest on the floor a while. I’ve had to accept certain limitations and boundaries I would normally never allow myself to have. I’ve had to actively meet needs that I wish I didn’t have.

At times I have looked out and felt a little left behind, seeing all my friends engage in this race of life, making plans, setting goals, and being perpetually busy -- knowing I don’t currently have the ability to participate. But, to my surprise I have come to know this as a gift.

 It is as if God knew if I could just be made tired enough I would finally be still. It’s interesting because for the last couple of years I have told Garth I continually have received the prompting

 just stand still.

Literally over, and over, and over again.

And then I would go on to frustratedly explain that I do not know how to do that! It is not that I haven’t tried – I stepped back from photography for a time, I left social media, I tried to be still in life, but neglected to be still in my mind and heart.

Obviously He knew I would never find this peace and this necessary surrender while engaging in the race we all so easily fall into.

So as the story goes, I was shown how to be still, and then given the opportunity to embrace it.

I have been made tired, and often tell Garth I feel so bone deep exhausted. I have become acquainted with what true brain fatigue is and how it simply cannot be worked around. In the beginning of my seizures, I would even find myself completely unable to read my own paperwork at the doctors office. I have been made emotionally tired, sometimes feeling like I’m on edge because I can’t gracefully handle one more thing. I have been too tired to be anything but still.

Through this exhaustion I feel I have been made new, and life is beginning to have a freshness to it again as I see all the progress we have made.

I entered this pregnancy with quite a plan. And I’m ending it without any plans whatsoever, and honestly I think that’s better. I’m not going to pretend like I don’t desire to be a more present mom again or that I wouldn’t love to feel more connected to my body. I’m also not going to pretend I’m not hopeful my seizures someday end. I do quite literally dream of the day I put my baby in the stroller and go for a walk and my body doesn’t ache of seizures and my brain doesn’t feel foggy and fatigued. But I have learned I can’t chase all of these things. I can’t run around trying to mold the life I think I need in order to be happy. I can’t gather up my identity in the doings of living in this world and I can’t earn my worth in accomplishing some self-inflicted goal rooted in the mind’s rhetoric of “not enough”.

The seizures may continue, they may pass. I may find rest, I may stumble upon a whole new set of challenges. Regardless of what’s next I know some things now for sure: I am weak so that I can be strong. I found emptiness so I could be whole. I found surrender so I could come to understand the rescue. And finally, I found an exhaustion so deep that I have nothing left to give myself but the grace to just be still.

And for all those lessons I will be forever grateful – so thanks baby boy for trusting me to learn them before you arrived.

Our Third Pregnancy through Garth's Eyes

Vulnerable; That was the word you asked me to use in writing this. Vulnerable; The single term you could with almost certainty say I try to never be. I don’t want to allow it. I don’t want to show it. And yet, you may be right. I’m not sure there is a better way to explain our journey of the past eight months.

I won’t forget that Saturday in Boulder. The way you talked to me imposed something that I hadn’t felt in a long time; fear. I was scared that you were only eight weeks along with this pregnancy. I was scared that you said you didn’t feel ‘right’, and that you didn’t want to go on. I was mostly scared because I didn’t know what that meant. I didn’t know what to do. I didn’t know what to say. That was only the first time of many times I would feel that way in the coming months.

You know me better than anyone ever has. And because of that you know I like to always take the high road of “everything is probably fine right?” I tried that for a long time with Camden before I listened to you; Luckily I finally did and one surgery later he is better than ever.

But back to Boulder. I made the phone call, and got the help I thought would work. I was so confident that the prescribed drug would help, even if it took a little while. By that Sunday afternoon you looked like I’d never seen you look before. You were hardly breathing, and shaking slightly. I guess we are lucky to live as close to an ER as we do, although this trip didn’t exactly go as well as it could have.  The doctors and nurses chalked everything up to an adverse reaction the drug and dehydration. I’ll admit, after a few liters of fluid you were looking and talking more like yourself! “Just our luck. An adverse reaction!” I thought.

Four hours later we were at another ER after you had begun having seizures. Again, chalked up to an adverse reaction to your one single dose of medication. That ER physician, fresh out of residency was so rattled and concerned about other patients he didn’t even give you a chance. And worse, he didn’t seem concerned at all about our baby. And no one had seen what I had seen. No one had seen the violent shaking, the interrupted breathing, the gasps where it felt like you were just searching for your next breath. And so, we were discharged. Sent home. “Everything should be back to normal within 24 hours” they said.

When they weren’t I began searching, praying, reflecting, and praying some more. I hated myself for not listening to you over the previous weeks when you said you felt “slow”. I just figured it was the first trimester, of course you felt slower, you were making a baby! I hated that every doctor I called didn’t seem to care. Don’t get me wrong, I’m immensely grateful for all of the physicians we have seen and all they have done to help. And statistically most patients explaining what I had been trying to probably don’t have what you have. So their line of thinking in saying “it will all be alright”, or “it’s probably nothing” normally works out for them. But I’ve never felt so frustrated in my life by our medical system.

I felt hopeless, reading survey’s to you as doctor after doctor tried to say it was all depression during pregnancy. I felt worse when I heard your responses and knew that you had felt abandoned by me; That in some way you felt completely alone. I knew that in some regard depression did have something to do with what was going on, but then the grand mal seizures started happening. And no one believed what was happening. We would drive to every appointment and you would seize the entire ride there. We would drive home from every appointment and you would seize the entire ride home. I hated the car. I hated everything about trying to restrain you while also being relaxed. I didn’t want to cause you harm, but also didn’t want you to put your body through the window. 

I thought we finally had it figured out when I showed the video to a physician that it seemed was finally ready to listen. It had been two weeks since your initial ER visit. Two weeks of fighting and calling and visiting and repeating and seizures gradually building day by day, getting worse and worse. Finally someone listened. Within 25 minutes we were in the ER, an order put in for an EEG to monitor your brain activity during the episodes. We’d been down this road before. Camden’s EEGs always came back normal. Kyra’s did too. But this time I had a striking fear that something was going to be different. “Push the button each time you see an event so we can track the video with the brain activity”. And all you had were the smallest of seizures compared to what I had seen. The Neurologists were sure “everything was fine”. Your EEG looked normal. I felt torn. Had they actually captured everything? Still, after two weeks, no one had seen what I had seen. Some had seen bits and pieces, but no one had seen the full-blown events.

So then we played the waiting game of getting in to see a seizure specialist. How is it that we can’t get in to see a specialist for 3 months? By some miracle we got in early due to a cancelation. For the first time I thought we had it figured out. Non-Epileptic Seizures.  I felt like this doctor took us seriously, even though she hadn’t seen a “big one”. But what was the treatment? Nothing. Find your own doctor who specializes in these things. Find our own?

And so we sat for weeks more. All the while your seizures escalating in both frequency, length, and severity. All the while no one seeing what I saw. I had next to no patience with Camden and Kyra. I felt like I couldn’t keep up with the laundry, and cleaning, and eating or sleeping. Energy drinks suddenly became my “elixir of life” once everyone was finally asleep and I would open my laptop to get plugged in and work. And so I would work each night for 4 to 6 hours. And then I would force myself to still wake up and lift. Those 60 minutes in the gym were my break. Those 60 minutes were my escape. I knew that my body was fatigued and broken and sleep deprived, but I needed those 60 minutes to just let it all go.

And then the kids would wake up. The day would start. I had no idea what each day would bring. And yet somehow, through it all, I still wasn’t truly listening to you. I hated myself for not listening before, but here you were. Fighting with everything you had through every day. Do you remember the beginning of this? Do you remember having 20 or more seizures a day for weeks at a time? I can’t imagine the pain you felt. I can’t imagine the lack of independence. I can’t imagine not being able to control my own body or my own mind. I can’t imagine how empty you must have felt being able to hear me, but not do anything about what was happening to you.

I’ll never forget driving home one night. You want soup. So we went to get soup. Early on in this pregnancy I just decided whatever you needed, it didn’t matter the cost. It was about getting through every day. Every single day. One day at a time.

So Chick-Fil-A Chicken Noodle soup it was. I asked if you wanted me to just run and get it. You said you wanted to come along with the kids. So off we went. We made it to the restaurant and got our food with no events. I was so pumped! And then came the drive home. It was late, and as if riding the car wasn’t enough to normally send your body into a tale-spin, driving at night was just icing on the cake. All of the head lights streaming past seemed to instantly send you into the most violent of seizures. All I wanted to do was get you home. That drive from Chick-Fil-A probably takes 15 minutes at the most. On this particular night it seemed to take hours. This was one of your biggest seizures yet. I tried to help you, and I tried to shield the kids from seeing you, all while driving 80 miles an hour with my knees to get you home as fast as I could. I wept. All I could say was “I’m here Amy. You’re okay.” Followed by “Mommy’s okay guys. She’s just a little sick”. How on earth do you explain to a five and almost three year old that seizures are okay? I remember going to another room once everyone was in bed and just crying. I cried for a long time. I didn’t know what to do, how to help you, how to help our baby, or our kids. And honestly all I wanted to do was talk to my parents. I wanted to talk to someone about how to cope with this. I prayed and felt alone. I felt such a lack of faith. How many blessings had you received? How many had I personally given you? Why weren’t any of them working? I had family and friends I could reach out to at a moments notice. I knew that. But I didn’t feel like any of them would understand. And so I didn’t.

Within another day I had had enough. I prayed for help at the end of my rope. Your OB-GYN called me on his lunch break. I just unloaded on him for 25 minutes straight. I’m not sure I’ve ever had that experience with a doctor. Suddenly a chance at a second opinion went from a three month wait to a “Can you come tomorrow at 11am?”.

Within two weeks we were bringing our bags into Swedish Medical Center for a week long stay in the epilepsy monitoring unit. The week of Halloween. You were heartbroken that you would miss trick-or-treating with the kids. And let me just say that’s how it’s been this entire pregnancy. Even through all the seizures and the sickness your first thought has always been on the kids and on me. I’m not sure how we got so lucky.

After the first two days I thought this would be another EEG with only minor events. Why couldn’t anyone else see a big one? I didn’t get it. And then it finally happened. Three big seizures, the last of which was the biggest I had yet seen. All between 2am and 5am on the third day. I felt immense relief that at least someone else had finally seen what I had been trying to describe for two months. I laughed so hard when you thought your nurse was Jesus, partly because I finally felt free of this burden I had been carrying for months. I had tried my best to be your advocate and until that night I felt nothing had worked. I was so tired driving home that morning at 5:30am, but it was the first moment of true peace I had felt in months. I wept again and was thankful that some prayers had finally been answered.

I was grateful to the friends and family we’ve had helping us out.

I was grateful that we finally had a treatment plan to start getting you help.

I was grateful that the kids had somehow survived.

I was grateful that I had such a flexible job that allowed me to work remotely, and at whatever time of day or night that I could.

But mostly, and above all, I was grateful for you.

Even now, as we approach the end, and your life is still so incredibly miserable you are fighting your hardest through every single day. You are fighting the times when your mind tries desperately to dissociate. You are fighting the physical pains of a torn hip, of a seizure worn body, and of a growing baby. You have fought through multiple bouts of the flu, throwing up dozens of times. You have fought through ER visits for yourself to get fluids. You have fought through ER visits for our kids. You have fought through extra ultrasounds making sure our baby is healthy and okay. You have fought through my days of being irritated, out of patience, and out of energy.

Lastly you have fought through the times when it seems like everyone else around has moved on; the times when just because we got a diagnosis and are getting treatment that doesn’t mean life is any easier. Yes, your seizures have lessened. But they haven’t gone away. Not long ago you seized off and on for an hour straight. I wept again. I pleaded with God to know why these were still happening. And I don’t have an answer. All I know is you are the only person I know strong enough to have endured what you have.

You and I have said many times that no one is made to experience anything more or less severe than anyone else. We have so often heard from others “There is no way I could have gone through that.”

Well there is no way we could have either; we just did. You just did.

So above all I just want to say thank you. Thank you for never giving up. Thank you for giving me the chance to lift you up when you couldn’t lift yourself. Thank you for making me better. Thank you for giving me the chance to learn and listen. I’ve joked several times that the only reason you had to go through this was for me to learn. Although I don’t actually think that is the case, I have learned valuable lessons. I have gotten better and I will always try to continue that trend.

Sometimes our weekly grind gets tiring. Usually two to three appointments a week. My “Chick-Fil-A” Tuesday mornings with the kids after we drop you off at treatment. Our “Einsten Bagels” Wednseday’s with the kids after an OB appointment. Or even our “Mickey Mouse” Friday’s with the kids while you get prenatal chiropractic adjustments. I wouldn’t trade it for the world. I know you feel bad for our kids because we’ve all lived in the car for the past eight months. I feel bad for them to because of how out of patience I have been.

But I’m not worried for the future. Because our kids have you as a mom. And every ounce of fight that I have seen you put out the past eight months lives in them.

So thank you for everything. Thank you for carrying another baby for our family.

No matter what happens next with the delivery, or the seizures, or any of it; thank you for letting me tag along. I don’t like being vulnerable. I don’t like really letting others in.

But I’m not going anywhere;

This is what I signed up for.

-Garth