(January, 2013)
I have this unhealthy tendency of bottling things up inside
of me. I just go about everyday life like nothing is wrong. And it’s not that
I’m pretending to be ok…I’m pretty good at actually feeling ok in times of
stress. Until, eventually, I have to just let it all out. I have to let out
everything that I have just pushed to the back of my mind. And for me,
oftentimes “letting it out” means writing it out. I have been keeping a journal
since the second grade, and writing is very therapeutic for me. My sister also
insists that my recent sugar and spending obsessions aren't healthy coping
mechanisms. (What?) I think I will stick to writing. Much easier on the
waistline and the wallet. It has certainly been a while since I have written my
thoughts down, so bear with me. You may be in for a ride. ;)
Oh geez…where do I even begin??
Have you ever heard
of acute Cerebellar Ataxia? Yeah, neither had I…until almost four weeks ago.
Casey and I were in Moses Lake helping with his little
brother’s wedding reception. The night before the reception Emma tried to get
out of bed and come see us, which is normal for her. I know. She’s three years
old and she still gets up at night. Ahh!! But anyway. This was different…she
was laying on the ground crying, and super upset. In her own toddler way, she
explained to us that she had tripped trying to walk over to us. (“I stepped on
my foot and fell on my head!” You can laugh, it’s ok. It sounded really funny
to us, too.) Thinking nothing of it, we sent her back to bed. The next day she
was a little clumsy. She kept falling and running into walls. Still, we thought
little of it. During Emma’s nap I went with Brittany and Lacy (sisters in law)
to run errands and set up a few decorations for the reception. As we were
finishing up with that, Casey called me. I figured it was one of his usual,
“what the heck is taking you so long!?” phone calls. Looking back now, I wish
it had been.
“I’m taking Emma into the Urgent Care. She can’t even walk.”
As a mother, these words are enough to make your stomach
sick. And I wasn't there, so I was just really confused. What was going on with
her!? The drive home was short, but the entire time I felt terrified…obviously
anticipating the worst. Who wouldn't? Lacy and Brittany tried to comfort me,
telling me that it probably was something as simple as her equilibrium being
thrown off due to an inner ear infection. Which made a lot of sense to me. I
could only hope that’s what it was!
Not too much later, Casey called me and told me that we need
to take Emma to Sacred Heart Children’s Hospital in Spokane to meet with a
neurologist. The urgent care doctor (a little insensitively, in my opinion)
told Casey that in his 27 years of working there he had NEVER seen anything
like this. And I thought I had felt sick before…
The moments following that are just a blur of shakily
packing an overnight bag (just in case) and being comforted by Lacy while I
couldn't hold back my tears anymore. The drive to Spokane seemed so quick.
Sitting in silence we just stared at the road ahead of us and the snowy fields
around us, both of us so scared. Emma slept.
We arrived to the hospital and getting checked in didn't
take very long, they were expecting us. They put us in a room where we waited
to see the doctor. One of the many that we would be meeting with.
Emma was in good spirits, aside from not being able to walk
or control her hands. Her speech was beginning to slow down and become a little
shaky. Ryan and Cristina (Casey’s brother and his wife) were actually in
Spokane because Cristina’s basketball team was playing there that day. They met
us there at the hospital. What a comfort it was to have them by our side. Ryan
was so sweet with Emma, playing with her and trying to help her feel calm and
happy. It was so touching. They are both so good with our girls.
(April 30, 2013)
The
doctor came into the room, and Emma absolutely made her day. She asked Emma,
“Now, do you know why you are here?” to which Emma responded, “because…I think
I might love you!” It was so sweet. The doctor was so flattered, and she
bragged about it to everyone for the next week. J
She talked with us a bit, discussing a few possibilities, such as brain tumors.
We had so many questions. Is this permanent? Is it going to get worse? Is it
going to damage her brain…or take her life? The fact that nobody had any
answers is what caused the most terror. That, and having to watch this sweet,
happy little girl have to endure such a traumatizing experience. It just hurt
me to watch her.
We
checked into a room and began our week long stay at the Children’s Hospital. Doctors
ran tests. They monitored her vitals and her behavior. She had a couple MRIs,
which came back clear…meaning it was not a tumor! That was great news. But
still…no answers. Meanwhile, Emma’s condition was progressively worsening. She
lost her ability to walk. She lost her strength to stand! She tried to stand,
but her legs would wobble uncontrollably. This was so frustrating for her. She
would cry and cry. My poor little baby girl. She had no idea why her body
wasn't working. She could not speak clearly anymore. She developed such a
stutter that we could hardly understand what she was trying to say. Her hands
shook so badly that she could not control them. She had to have help to eat,
and she even had trouble keeping her food down. It was scary that she couldn't
eat!
Ryan
and Cristina stayed in a hotel the first night, and they stayed by our side as
long as they could. They helped us so much by being there, I can’t even express
how much it meant to me. The first couple days were just so emotionally
draining. I remember that I kept thinking, “I can’t handle this any longer. I
have to get out of here. This needs to be over; we need to wake up from this
horrible nightmare. I am too tired to stand this any longer.” We tried to be
very strong for Emma. We did not let her see our fear. We watched Beauty and
the Beast, and Ice Age with her so many times. She loved it. She was actually
in really good spirits for what she was going through! She was so strong! I was
so proud of my girl.
Each
night I slept I slept with Emma in her little hospital bed. At night I couldn't
be strong anymore. I cried. I sobbed…and pleaded with the Lord. I just wanted
things to be back to normal. I would give anything to see her dance again…to
hear her sing. My heart literally ached. Every night she woke up crying, and
assuming it was because she needed to use the restroom, we would carry her
there each time. She had to go several times because of the constant liquids
from her IV.
She had
terrifying episodes in the middle of the night when she would sleep talk, and
try to sit up. However, because she could not control her movements or her
speech, it was very much like she was having seizures. She convulsed and just
filled the room with senseless chatter. It was terrifying.
There
was a physical therapist that worked with Emma. We would walk her down the hall
to the play room and her job was to just play. She especially loved playing
with the pretend food in the little make believe kitchen. She had so much fun
feeding us and her face lit up when we would pretend to eat her food. (She
enjoyed this so much that we bought her a set when we returned home.) Her
therapist worked with her every day.
They
had a little “family room” on a lower floor that I was able to go to and wash
laundry. It was nice to be able to get away for a couple minutes, and just
breathe. It was a nice little walk to that room, with a hallway of windows, a
bridge, which overlooked Spokane. The ceiling of this hallway was covered in
beautiful fish mobiles that brought a smile to my face…because I knew that Emma
would have loved that.
Casey’s
parents brought Grace to visit on day 3! Oh I had missed her so much. I had
never been away from her for so long before! It was unbelievable how Emma’s
demeanor changed the second she laid eyes on “her” baby. She was just beside
herself!! She was happier than I had seen her in days. She yelled “G-ggg-
raaaaccceeeeyyyy!!” with her little stutter. It is amazing how much she loves
her baby sister. Grace ran around the room laughing harder than she ever had at
that point. We put Grace up on Emma’s bed, and Emma was suddenly herself again,
tackling Grace and making her squeal. Right then, we knew that she needed to be
home.
Through
tests and careful evaluation, they narrowed Emma’s condition down to “acute
Cerebellar Ataxia”. I could try to
insert the scientific explanation, but I think it would make more sense if I
just simplified it a bit with my own words!
So
around Christmastime Emma had a slight fever, runny nose, you know-just the
typical wintertime sniffles. Well, apparently her body never stopped fighting
it. Her antibodies went into overdrive and attacked her body. The antibodies
attacked the nerves surrounding her cerebellum, causing a lot of swelling.
Since the cerebellum is the part of the brain that controls motor control and
balance, she lost all of hers. We had never heard of this before…it was a
little hard to believe at first. So according to the doctors, it was only a
matter of time before she would most likely make a full recovery. With the help
of therapy. Six weeks.
(August 3, 2013)
So
Casey had to go back to Ellensburg so that he wouldn't miss any more school. So
there I was. In a strange place…alone with my sick little girl. I was really
scared.
When
the doctors finally reached a consensus that her condition would be manageable
at home…and when she was no longer throwing up…they let us leave. My sister in
law drove up to Spokane to pick us up from the hospital. I was glad to be able
to finally go home…I knew that she needed to be around family, that she would
recover faster this way. Somehow we managed to pack Emma, still unable to walk,
and all of our bags downstairs and into Brittany’s car. We made it back to
Moses Lake, where Casey’s family would help to take care of her for the next
little while. Nobody anticipated an easy recovery…especially with Casey in
school and little Grace needing my attention as well.
When we
entered the house and Emma was delighted to see her cousins and Maymee and Papa
Jer waiting to greet her. Uncle Dee had set up an adorable little princess bed
in the corner of the front room so that she could lay there with everyone else.
Dee isn’t always extremely sentimental…so this absolutely melted my heart.
(thanks, Dee. J…I
needed it.)
Grandma and Grandpa Marlatt were visiting from Canada as
well. We all spent a few days trying to help Emma cope with all of this. And
then came the frustration.
Emma
was angry. She was impatient…and frustrated. Who wouldn’t be? She couldn’t walk
by herself…or feed herself…or even talk without a stutter! She was so upset…and
very hard to deal with at times. But I tried my best to be patient with her. I
knew this was not something she had chosen…and I can’t even begin to describe
the pain I felt to watch her go through this. She was so little. She was so
confused.
Finally
we took her home to Ellensburg. We tried to get back into our routine, and she
attending her physical therapy. One week passed and I was feeling somewhat
discouraged that we couldn’t see any visible improvement. Oma (my mom) came and spent some time with us.
She played with Emma and helped her out a lot. One of the sweetest memories was
of my mom sitting with Emma at the kitchen table making a collage out of magazine
pictures with her. Emma loved that.
I was
called to be the “sunbeams” teacher at church during this time. I taught the
little kids…3 and 4 year olds. Yes…this means I taught Emma’s class. Let me
tell you…this was NOT an easy task. I know it would have been difficult anyway,
due to Emma’s naturally “spirited” personality…and the fact that she was almost
a year younger than any of the kids in there…but with everything else going on,
it was borderline impossible. Her anger…her defiance…my stress, fear,
impatience, and anxiety. It wasn't a good combination. But we made it through.
Following
this frustration stage that Emma went through came the “baby” stage. Her therapist
told me that because of how difficult this had been on her, she was reverting
back to a time in her life when everything was much easier. So she began to act
like a baby. She just mimicked Grace basically. All the time. I didn't do well
with this phase…I just wanted her to act like herself again.
Time
passed, and slowly but surely Emma made a full recovery. Now it’s as if nothing
had ever happened. She is the same spirited, playful little girl that she was
before the Ataxia. Looking back, I have to say I am beyond ecstatic that there weren't
any lasting effects. While we were going through it I was convinced that there
would be some lasting repercussions.
Sometimes
when things like this happen, you wonder why, as cliché as that may sound.
However, I will testify to you that hardships do make you stronger. The Lord
allows these things to happen so that we can become better and spiritually stronger.
I look back at how scared I was at that time...and how the Lord never left our
side. He helped us through it. I am so grateful for my girls, and for their
health. I am so thankful for their happy little spirits and for their energy. These
two little girls bring so much joy into our lives!
On New
Year’s Eve I threw a fit because Casey wasn't able to spend that evening with
me. He had to chauffeur a youth dance that night. I wasn't thrilled about bringing
in the New Year without him. It turned out to be kind of nice, though, eating ice
cream and watching TV. A few minutes
before midnight I started to think about what I wanted to be doing at midnight…how
I wanted to bring in the New Year. Anyone that knows me will probably think
that this doesn't really sound like something I would do…but I decided that I
wanted to be reading the scriptures. So I opened them up and began reading a
random scripture. A scripture that I would read daily for the next month. One that
got me through something that I never could have anticipated. A scripture that,
to this day, is set as my screen saver on my phone.
2 Timothy 1:7
“For
God hath not given us the spirit of fear; but of power, and of love, and of a
sound mind.”
Coincidence? I think not. I even remember calling my parents
to wish them a happy new year…and telling them about this. I told my dad “I’m
kind of worried…I wonder what the Lord has in store for me this year?”
These
words have brought me peace throughout that trial…as well as this move we have
made across the country. It’s kind of comforting to know that we’re not alone
in this.