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.
Today was a very special day at church, one which we look forward to every year. The children of our congregation put together a program of music and spoken word, illustrating what they have learned through the year at church. It is always precious, with moments of hysterical cuteness nestled among tender truths shared through the eyes of the most innocent and pure. It is my favorite Sunday of the year.
Today's program did not disappoint. This year the children have been learning and gaining a testimony that our Savior, Jesus Christ lives and loves them each individually. It was a beautiful program, with heartfelt stories of how the children know they are loved by the Savior.
One song in particular was especially moving today. It was called "The Miracle," and lists the many amazing miracles which Jesus Christ performed while on the earth, but explains that the most important miracle is the supreme sacrifice he made for each of us. The words of the chorus are as follows:
"Jesus is the God of miracles,
Nothing is at all impossible to him.
But I know this above all miracles
The most incredible must be
The miracle that rescues you and me."
The song was beautiful and there was a strong feeling of the Holy Spirit present in the chapel, testifying of truth as the children sang. There was one tiny part, however, which brought tears to the eyes of everyone who listened. It was the sweet little ting of a triangle being rung by my 11-year-old daughter with special needs.
Elise loves music. As soon as the first note sounds, she is bouncing in her seat with the biggest grin across her face. She is mostly nonverbal, so Elise communicates with laughter, smiles, and swooping motions of her arms along with the music.
Today, however, Elise's voice was heard crystal clear along with all the other kids, in the form of a shiny silver triangle. Her teacher helped by holding the triangle and guiding Elise's hand with the striking wand, but it was clear that Elise knew she was making the beautiful sound. The grin on her face and the light in her eyes could be seen from across the room.
I couldn't help but think about what a miracle Elise is in my life, as well as the lives of those around her. She is a spot of sunshine in an often dark and gloomy world. The sound of her laughter and the feeling of her sweet strangling hugs can carry me through my toughest times. Just being near her makes my worries and stresses seem to melt away.
I am so thankful for a God of miracles. I know that He lives and loves His children. I see evidence of this love everyday when I look in my sweet daughter's eyes.
She is my little miracle.
My husband and I have been blessed with four amazing children. We love each of them in special and unique ways. Our third child, however, is extra special to our entire family.
Elise was born April 15, 2004 in Edmonds, Washington. I discovered that I was pregnant with her shortly after moving our family away from the comfort and security of home in Idaho with the rest of our relatives, up to the glorious gray skies of Washington. The pregnancy itself was relatively uneventful, but my rollercoaster of emotions was another story. Although I saw our big move as a family adventure, I was still struggling with being so far from our families. And I missed the sun. Terribly. I hoped that with the birth of a sweet new baby we would feel more settled in our new location.
Elise’s birth was short and sweet. She barely gave us enough time to get to the hospital before she decided to make her entrance into the world. We were elated with our beautiful little girl. Financially we were struggling, however. Our house in Idaho was not selling and the renter, who we relied on to keep us afloat, lost her job and was unable to pay her rent for month after month. Since I was no longer working, and we could not afford to pay both our mortgage and the rent for our apartment in Washington, we were in a tight spot.
I ended up moving back to Idaho with a two-week-old infant and two other children in tow. I hired an attorney and took back our house. To ease our finances, my husband Eric let our apartment go and stayed with good friends in Washington while he continued to work from there. My mom watched the kids as I went back to work, having only given birth to Elise less than a month before.
It was a tough time. I put our house back on the market, was working and single parenting, while trying to keep the house in pristine order for prospective buyers. Eric was only able to fly home to see us every other weekend.
I remember lying in bed late one night, with Elise’s perfect tiny face nestled snuggly under my arm after I had just nursed her for the second time that night, and feeling so alone and overwhelmed. Eric was five hundred miles away. I had to go to work in the morning, and I was missing out on all the precious bonding time you typically get with your newborn. I didn’t know if the house would ever sell. I didn’t know if we were going to make it financially. I didn’t know if there was anything else that could possibly be added to my burdens, or if I could bear it.
Of course it is at our very lowest that we have to learn how to dig down the deepest and find our faith. I was about to discover how deep I would have to go, because our journey was only just beginning.
One hot weekend in July, Eric happened to be home with us. He was holding Elise in his arms, where she always seemed happiest, when he suddenly jumped up yelling for me to come. I ran into the room only to see my tiny baby shaking violently. It seemed to go on forever, and I could see her gasping for air. Her lips started turning blue and both of us were in a panic. Finally the seizure stopped and Elise went completely limp and was unresponsive. For me, time seemed to stand still as I thought that I was witnessing my precious little girl pass from this life. Eric was throwing the two older kids in the car, saying it was faster to just drive to the emergency room since we happened to be so close. My little three-year-old Ethan did not even have any shoes on, and we did not have time to look for them.
I remember so vividly the thoughts that raced through my screaming head as we flew to the hospital. I was sitting next to Elise in the back seat, holding her tiny limp hand, touching her pale face, and pleading to my Father in Heaven, “Please don’t take her from me, I’m not ready to let her go. I haven’t had her long enough.”
At the hospital the test results were inconclusive. She had two other seizures before they were able to get her medicated enough to stop them. None of their scans or tests showed any signs of infection, or any other reason for her to be seizing. They dosed her up on anti-seizure medicine prescribing it for an indeterminate length of time, proclaiming that they had no way of knowing what was causing the seizures, and sent us home the next day.
It took six more months, with continual issues with Elise's health, before we were able to get a real diagnosis. In the meantime, we were finally able to sell our house in Idaho and moved fully back to Washington. I returned to the family practitioner who had delivered Elise and she referred us to specialists at Seattle Children’s Hospital. It was there that our questions were finally answered about why our little girl was having seizures.
The meeting with the physician's assistant at Children’s is all a blur to me now. I remember hearing the word “lissencephaly,” but my brain stopped working when the woman said that children with this condition generally have a two-year life expectancy. She pulled out MRI images, showing us the difference in Elise’s brain anatomy from an average brain and gave us a few printouts of support groups and special needs services, but none of it was making sense.
Was I in a dream? Could this possibly be happening? We drove most of the hour-long drive home in stunned silence, until the tears started flowing. After more than a year of emotional strain with all the hardships that we had endured, I didn’t know that I could shed any more tears.
As soon as I got home I poured over the internet, looking for any kind of information that I could find on lissencephaly. The information was not good. Lissencephaly means “smooth brain,” in that there is a general smoothness to its shape, rather than the normal ridges and valleys. This change in brain structure interferes with the proper neural synapses, causing seizures which generally are difficult to manage, along with severe developmental and physical delays. Most children advance only to a three- to five-month developmental level and struggle with the motor functions of chewing and swallowing, causing aspiration and infection. The children that I found who survived longer than two years were in wheelchairs and had feeding tubes.
It was a very dark time. I felt like I was drowning in a dark pool. No matter how hard I struggled to push myself up, the weight of my reality kept pushing me deeper and deeper. Well intentioned friends tried to help but I was unable to talk about it. I felt that I would be crushed from my fears and grief.
I was afraid that I would have to watch my little girl languish in a difficult, brief life. I was afraid that she would not be able to enjoy happiness in this world. I was afraid that I would not have a personal relationship with her, that I wouldn’t be able to see her own little spirit and personality coming through the disability. I was afraid that I would not be strong enough to carry this burden.
The only thing that helped was prayer. I poured my heart out to my Father in Heaven. I asked, “Why did this happen? Why my little girl?”
I did not receive an answer through words, but what I did feel was love. I felt an overwhelming, all-encompassing, undeniable blanket of peace to my heart. I did not know what would happen. I did not know what our future trials would be, but in my heart I knew that I could have comfort and peace as a constant companion. I was never alone, and neither was my precious little girl.
Through the last ten years we have seen some amazing miracles. Elise started physical therapy right after the diagnosis was made. Her medications were adjusted to better suit her condition, and she has top-notch doctors looking out for her.
Elise’s milestones are a little different than the normal story, but they are highly celebrated at our house. She sat up on her own at eighteen months, started properly chewing her food at around three years old, and could stand on her own at five. At age eight, she miraculously took her first steps. The first year was aided by a walker, but she got stronger and stronger and now is running around the house. She is also learning how to use her hands more, and has recently learned how to turn a doorknob, escaping to our neighbor’s yard before we were even aware of her new skill.
Life with Elise has been an absolute joy. The amount of love she exudes to everyone around her is all-encompassing. She is everyone’s friend and everyone’s favorite. She says hi to anyone that she meets and goes in for a hug before they even know what hit them. She is a super star at her elementary school, where all the kids and teachers adore her. She has a little following of girls at her school that help her out on the playground every day, arguing over who gets to help her do what, and frequently comes home with a sweet gift or drawing in her backpack from one of her friends.
It has been such a privilege and a blessing for Elise to be in our family. She always helps us to see the good in the word, and I feel greatly blessed to have the opportunity to raise one of our Father in Heaven’s choicest spirits. As I reflect on what I have learned by raising a child with a disability, I think of the quote by Dieter F. Uchtdorf, who said, “How much of life do we miss by waiting to see the rainbow before thanking God that there is rain?”
Some may see having a child with a disability as a trial. Before Elise joined our family, I used to think so as well. But then I was plunged head first into that world myself. I am constantly bombarded with the day to day struggle of feeding, dressing and caring for a child with special needs, one who is completely reliant on me for her most basic care. I live in continual fear of the next episode of seizures, with the overhanging possibility that the next time we won't be so lucky, and she could have serious after effects.
But I have also been enveloped in the warm embrace of Elise's monster hugs and caught her blown kisses from the air. I have been surrounded by the music of her infectious laugh and marveled at every miraculous milestone.
I have never been so grateful for a trial in my life.
Elise has always helped me see the rainbow, even before it is ready to be revealed, all because I have learned to not be afraid to get a little wet.
My name is Heather.
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