Today has been a hard day.
I got the dreaded call when I was just about to put my leftover dinner from last night into the microwave at work during my lunch break.
"It's Elise," said the frantic voice on the other end of the line, Elise's sweet teacher at school. "She started seizing ten minutes ago, a really bad one. We gave her the Diastat (her emergency medication) at four minutes, but the seizure hasn't stopped. The paramedics are on the way."
"I'll be right there," I said, grabbing my jacket and my purse. My coworkers could guess what was happening. Unfortunately, this was not our first rodeo.
"Let us know how she is," they called anxiously as I ran out of the building and to my car.
As many times as I have run through scenarios similar to this, it never gets any easier. Sometimes it gets harder, as a matter of fact. The first time is such a new experience, with so many unknowns, that you have no idea what to expect. Then the fifth, fifteenth, and twenty-fifth time rolls around. By then you know too much. You know what is "normal" for your child, you know what to expect, and you know what you instinctively dread.
What if this is the last time she is able to come around afterwards? What if her brain and her functionality is fundamentally altered from this episode? How many seizures of this magnitude can a tiny body like my little Elise's put up with? What if they can't make them stop?
All of these questions raced through my head as I drove to the school, trying not to speed too much but knowing full well that I was at least 15mph over the limit. I couldn't help it.
Elise had just started to ease back into consciousness when I pulled up at the school. I talked about the recent changes in her medications with the paramedics, who believed it was most likely just her body trying to adjust to something new. I declined transport to the hospital, since she had only just seen her neurologist three days before, promising to call the doctor as soon as I got home. Then I signed a waiver and drove her home, watching her anxiously in my rear-view mirror, as she couldn't seem to sit upright and continued to lean awkwardly to the side.
Once home, I struggled to get her out of the car, since in her loopy, drugged-out state she was fighting me off, kicking and crying. I awkwardly carried her still battling sixty pound frame into the house. Exhausted and emotionally drained, I finally fell with her onto the carpet in the family room.
And then I cried. A lot. Big, ugly, convulsive tears that saw no end. Crying is rarely delicate and glistening, like it is in the movies. It's violent, wrenching, and all-consuming.
Sometimes it is hard for me to remember the advice a dear friend gave me twelve years ago after we received Elise's diagnosis of lissencephaly. She had already been dealing with the complications of severe seizures with her own daughter for four years. While I was in the drowning terror of the upcoming unknown I asked her, "How do you do it?"
"I have learned to just live through each day," she said simply. "I don't think about tomorrow, or five years from now, or how I will manage when she is twenty. I take a deep breath and get through one day at a time."
The advice is simple, yet profound. Focus on the task at hand and trust that you will be given the strength to get through what will come.
It was just last night that I attended a beautiful meeting with the young women in our ward, with the theme, "I Am His Daughter," meaning a literal and divine daughter of a Heavenly Father. Each young woman got up and briefly spoke on what projects and goals they have been working on this last year and what they learned from them. I spoke on Elise's behalf.
I told them of the strides that Elise has made this last year. How she can recognize her name when it is written out, How she loves to repeat the letter "E." How she loves her yoga class at school and laughs almost the entire time she practices.
And I told them of how regardless of how much or how little Elise has physically learned this last year, the most important thing was what we have learned from her.
I have learned of patience. I have learned of hope. I have learned of faith. I have learned of love.
After the program several people came up to me and exclaimed how strong I am. Their words were sweet and sincere and I thanked them graciously, but inside I was screaming,
"I'm not strong! I'm not brave or amazing! I am weak and I am tired! There are days that I wonder how I will ever make it through!"
As part of the program, the young women stood and sang a song together. They pulled a chair out for Elise to sit on front and center. What they sang was "I Am His Daughter." I posted a music video for the song below for you to experience it's profound meaning for yourself.
As the girls sang they carefully placed pictures in Elise's hands for her to hold. One was a beautifully framed image of the words, "I Am His Daughter." The girls started crying as they looked at this precious little girl holding those words, portraying the words that she physically cannot say for herself.
In the final chorus they placed a picture of the Savior holding a child in his arms and they sang these words:
"And when I'm feeling small,
And wondering if I'll ever, find courage to stand tall
Through His love I remember
There's so much more to me
He helps me see that I have so much to offer
I am His daughter
He loves me the way I am
He's my strength when I stand
He is my King, and my Father,
I am His daughter."
There wasn't a dry eye in the room.
After a bit more crying this afternoon, the tears finally began to slow down. Elise had gotten annoyed with me so she kicked me away, as if to say, "Come on, Mom! Get it together!" So I picked myself up and started the usual routine of making sure all of her needs were met.
A few hours later, she is now in the hyper stage of being drugged and is wreaking havoc on the house. She is still wobbly, but she insists on walking all over, pulling open drawers and cabinets, dumping items out of baskets and investigating the garbage can. I can hear her jabbering happily to herself as I sit here typing.
I felt compelled to write down the barrage of feelings that overwhelmed me today. Maybe I just needed to get it out. Maybe someone out there needs to hear that everything is going to be okay, even when it doesn't seem possible. I didn't even know exactly how this post was going to end. I was so overwhelmed and distraught when I started writing, but now all I feel is peace.
I am struck with a deep and penetrating thought. Elise is beyond doubt a beloved daughter of her Father in Heaven. She is precious and perfect, a light to all those around her.
But so am I, for I am also His daughter.
I may not always be strong or courageous, but I am given strength when I stand. I am loved for who I am, with all my faults and weaknesses. I feel His love for me on a daily basis. And there is more to me than I ever give credit to myself.
Because I Am His Daughter.
My name is Heather.
Follow my blog!
Like what you just read? Sign up to receive email notifications of new articles posted!