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