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.
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 which 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 mortgages 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. Eric let our apartment go and stayed with good friends in Washington while he continued to work 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 and trying to keep the house in pristine order for prospective buyers. Eric flew home to see us every other weekend.
I remember lying in bed, with Elise’s perfect tiny face nestled snuggly under my arm after I had just nursed her for the second time that night, and felt 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 even going to make it. I didn’t know if there was anything else that could possibly be added to my burdens.
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.
One hot weekend in July, Eric was 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. Little three-year-old Ethan did not even have any shoes on.
I remember so vividly the thoughts that raced through my screaming head. 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. 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 before we were able to get a real diagnosis. We were finally able to sell the house and move 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 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. 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, and severe developmental and physical delays. Most children develop only to a three to five month 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. 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. 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.