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.
11/3/2016 09:33:45 pm
Only you can know the fear, helplessness and wondering what God has in store for Elise. If nothing else, she has drawn you closer to Him. Seeking answers and help. Seeking peace. Your relationship with God and Elise is to be admired and even envied by some. Perhaps you can't see it, but I and others can see that holy relationship you have. You have learned to rely on and walk by faith each day you care for her. And one day you will undoubtedly be asked to let her go back into the loving arms of our Heavenly Father. Perhaps today was preparing you. I love you Heather.
11/4/2016 09:34:05 am
Thanks for the cry this morning. They were blended tears of happiness that you made it through this event but so sad that Elise's body has to deal with these things and by extension, you have to deal with this and help her. I think so many people think you are so strong because you keep going each day. Keep up the good work! I loved your blog and I read the other one we talked about last night. It was a good reminder to keep going. We're working on indexing right now.
11/4/2016 10:39:09 am
Thanks so much for sharing Heather! We have a very tender spot in our hearts for Elise. How wonderful that you have the courage to share feelings so tender and personal while you are in the midst of the moment. These special children in our lives definitely help us draw closer to our Father and increase our ability to love and serve. Sending prayers your way for your family and for sweet Elise!
11/4/2016 01:21:34 pm
Thank You for SHARING. Sometimes it's seeing both the strong side and the deep personal side of one that encourages and strengthen others to press forward with Thier own private battles or challenges.
11/8/2016 02:57:21 am
HUGS! Thanks for your beautiful message. I know that hopeless feeling when people tell me I'm such a good mother and I do so great with my disabled kids. I wonder what Heavenly Father was thinking when He sent them to me. I have said, "What did I do to deserve this?" in tones of both anger and awe. It's a funny, crazy, blessed life.
11/12/2016 03:34:25 am
11/19/2016 11:30:09 pm
My daughter was diagnosed @ 4mos. In the events of this heartbreaking news given to you and your husband, my husband and I were told the same way. However, the doctor didn't offer resources for help. I was told to cherish the moments now, do I look towards the internet, nothing but bad news and we cried more falling in a state of depression. I had to gather myself and not cry as much, but I thank God for you because you have given me hope. No one can ever know how it feels unless they are experiencing it, I serve an almighty God that turn situations around and make non believers into believers. Elisa is a beautiful testimony that needs to be told about across the world to bring peace for the parents that are lost behind this disease. God bless you and your family.
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