Tomorrow we will be packing the car up to the rafters to prepare for a trip. But this isn't just any old trip. My oldest daughter, Heidi, will be leaving the nest to attend college at BYU-Idaho. The campus is in Rexburg, Idaho, 800 miles by car from our home in Everett, Washington. I know, because I already googled the distance. I also know that, according to google, it should take 11.5 hours to drive by car. By my own experience, however, I know it is more like 14 hours. Of course, that is in a car packed with four kids and one adult with a teeny bladder (and I don't mean my husband). It is the same school that my husband Eric and I met at twenty-one years ago. We absolutely loved going to school there. I will never forget all the amazing experiences and memories made on that campus and in my first little apartment of six girls.
I remember the nervous energy I felt as I walked into my apartment for the first time, to meet the five strangers that I would be living with for the next year. I remember not knowing how to say goodbye to my family, as my parents tearfully gave me a last hug. Like me, they also did not like to prolong things, so as soon as my mom had ensured that my kitchen was stocked with enough milk, cereal, and hamburger helper boxes to last me a month, they left me to start a new chapter in my life.
Six girls sharing two bathrooms, one refrigerator, and a communal pile of clothes and accessories. I was in heaven. We stayed up late talking and laughing, with plenty of goofing off in between. One roommate brought a Jane Fonda exercise video to school with her and we did one of her routines almost every night. Another girl made homemade facial masks with avocados and bananas, making our apartment and our skin smell yummy. We would pass around bridal magazines, dreaming about our own happily-ever-afters, and tease each other about the boys that were constantly hanging around the apartment until curfew.
I had never been surrounded by so much girls-only fun! Even though we had never met before the first day of school, my roommates became my dearest friends. They were my family away from home. In fact, we are still in contact with each other to this day. (On a side note, one of my roommates became my sister-in-law, meeting my husband's brother at our wedding, but that's another story!) Through my relationships with them, I realized how much my life could be enriched by having a handful of girlfriends at my back, looking out for me, encouraging me when I am down, and giving me a healthy dose of silliness and laughter to boot.
After Eric and I were married we shared an old derelict apartment which was above a clothing store and down the block from a frozen yogurt shop. The building was condemned the year after we moved out. I still remember the door which couldn't open all the way into the tiny bathroom because it hit the side of the toilet, and the gaping hole in the floor which was directly beneath our ancient claw-foot tub. Those tubs look fashionable and fun in gorgeous magazine spreads, but in real life, the lack of insulation was torture. Rexburg winters are pretty cold. I will never forget the frigid baths we had to take, since the tub was not equipped with a shower, and the air from outside would come swirling in from the floor, ensuring that our baths were quick and efficient.
Those were some of my happiest days.
Now Heidi will get to attend the same campus and make her own memories. We are thrilled that Heidi wants to attend our alma mater.
The only problem is, I feel like I have entered the Twilight Zone.
When did this child of mine grow to be old enough to leave the nest? I didn't give her permission to grow up so soon, she did it all on her own. I don't remember agreeing to this part of the bargain. It seems like she should still be a cute little thing, barely big enough to lug around her suitcase with a sticker proclaiming "Off to Gramma's House!" on it.
The problem is, I know that I did agree to this part of the plan. From the moment this tiny little bundle was handed into my arms eighteen years ago, I knew that someday I was going to have to let go.
It doesn't make it any easier, of course.
I am going to be that mom who is crying at the first rest stop outside of Rexburg, looking back into her "empty" car because it is one passenger short. I am going to be that mom who is anxiously checking her cell phone every five minutes to see if there is an incoming text from her daughter. I am going to be that mom that calls every night, just to check in and make sure she had something to eat. I am going to be that mom who sits in her daughter's empty room, fingering the porcelain ballerina that she left for her little sister to adopt. And I am going to be that mom who's heart will ache, not having her best friend just down the hall to show her her new outfit or tell her a funny story from the day.
However, I will also be that mom who cries tears of pride and joy as she sees her daughter grow from the new experiences she is about to encounter. I will also be that mom who encourages her to try new things because I know they will be good for her. I will also be that mom who hopes that she will find her own happily ever after with a special love, whether it be in the next year or the next ten. I will also be that mom who, while welcoming her home with a warm embrace, will gently nudge her to expand her own wings as she tentatively takes that first flight.
These eighteen years have made it all so hard to let go. Every day I have had the privilege of watching her go from a teetering toddler, full of smiles and laughs, to a beautiful young woman, full of promise and courage. I have seen her struggles and triumphs, her heartaches and growth. Watching it all, I have had the opportunity to love her more every day.
Yes, she may still be just a cute little thing, barely big enough to lug around her suitcase (she is mine, after all), but now it will be emblazoned with a sticker shouting "Off to COLLEGE!" The collection of beloved dolls and stuffed animals are now replaced with a collection of fashionable scarves and bright bottles of nail polish, and they will soon be packed into that big ominous suitcase.
It is just around the corner, and as much as I would like to hold on to what has always been, she will be off to start her own adventures. But my how her wings will shine. I can't wait to see how beautiful they will be, or how high she can soar.
You may be asking yourself, "So, what's up with all the ice buckets out there?"
I know the feeling, I was wondering the same thing myself. I tend to not like to follow the crowd and do things just because everyone else is doing them. In fact, I have a tendency to veer the exact opposite direction. It took me five years of my husband's cajoling before I was willing to dip my toes into the uber popular world of iPhones. I just tend to resist the things that everyone else is doing or buying into. The ALS Ice Bucket Challenge was no exception....
That is, until I watched this video.
A warning to my sensitive friends, the beginning has a little raunchy humor, but stick it out. The end is totally worth the wait. It is also incredibly eye-opening as to the gut-wrenching horror of ALS.
I started to look into this ice bucket trend a little more.
I discovered that it was started by former Boston College baseball star Pete Frates, who suffers from the disease and wanted to make a difference. Noticing its blaring lack of funding for research, Frates started on a quest to bring more exposure to this insidious disease.
See the article and video attached to the photo below to learn about Frates' journey to making a difference for those suffering from ALS.
Since the beginning of August, the ALS Ice Bucket Challenge, meant to create social awareness of the disease ALS (Amyotrophic Lateral Sclerosis), has swept the nation's social media. Starting on the field with athletes and teams, the movement soon rolled into the world of celebrities and spread quickly from there. Suddenly it doesn't matter if you are famous or a geeky high school kid. Everyone can be involved and feel a part of a national movement.
As of today, Sunday August 24th, an unprecedented 70.2 million dollars has been donated to the ALS Association to help fund research to fight this terrible disease and provide care for those who are suffering from it. Although some critics (myself originally included) question how much good a viral stream of people being drenched by buckets of ice water can really do for those struggling with the disease, many who are affected personally by ALS are elated with the public exposure their underfunded and often over-looked condition is receiving. According to those who must live with this nightmare every day, a bucket of water can mean a flood of hope that better treatment, and someday even a cure is possible.
I choose to accept the ALS Ice Bucket Challenge, and along with drenching myself in water plan to make a heart-felt donation. It is given with the hope that my little drop in the bucket can make the pool that much bigger, and give those fighting ALS the dream of a healthy future.
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.
For as long as I can remember, I have always wanted to be a writer.
It wasn't enough to just write. I wanted to earn the title of WRITER.
In the sixth grade, my English teacher must have seen a hidden yearning within me, because she gave me an individual assignment, separate from the rest of the class. I was to write a "book," and at the end of the assignment period I would read it to my class.
I was both exhilarated and terrified.
At that time, I was a very shy girl. It was difficult for me to raise my hand to answer any questions in class, let alone read an entire piece aloud. I was proud to be so singled out. While I was given permission to sit quietly in a separate room to work on my creation every day, the rest of the class worked on English assignments. However, it was a lot of pressure to be so singled out. I felt that everyone would be looking to me, thinking that I was showing off, and torment me even more than they already did.
I wrote a story about a girl who travels through time, having adventures with a new friend named Zack. I was terribly embarrassed to read the passages out loud which showed the awakening within a girl when she discovers boys for the first time, and I know that I blushed profusely when the two held hands. But I also remember how it felt to share something that came from within me, something that didn't exist before I put pen to paper, something that was a part of me.
It was wonderful.
I went through countless spiral notebooks throughout the next several years, filling them with stories, poems, and even songs. My sophomore year of high school, I attempted to write another "book." This one was about a girl who is mistaken for another girl, living in a mysterious castle. She must choose between two different men, the stalwart and brave one, or the mysterious and dark one. Which one is deceiving her, and which is the true hero? I would tease my friends with the story, a chapter at a time. They would beg me to finish the next installment.
I was in heaven! They all told me that I was going to be a writer someday. I believed them.
Then, I embarked on the new and exciting adventure of college, and the practical need to provide for a family became a top priority. My beloved literature classes were replaced with science and biology, anatomy and physiology. Instead of reading for pleasure, my time was consumed with studying from ten pound text books. Instead of experimenting with alliteration and prose, I was engrossed in research papers and statistical charts.
It took two years after I graduated from college before I could bring myself to pick up a novel to read for pleasure. However, as I began to pour over the crinkly yellow pages, it was like something awakened within me again. I began to devour books, trying to catch up on the years that I had devoted to studying for my degree.
I tried to form a book club. I was living in Boise, Idaho at the time, and craved the social interaction associated with a club, and also the intellectual stimulation which comes from literary dissection. A few people came a few times. It was a disappointing venture.
We moved to a neighboring city. I tried to form another book club. No one was interested. When asked, everyone would respond, "I don't have time to read." I would think to myself, "Neither do I, but now I have learned to MAKE time."
Finally, after moving to Everett, Washington, I made my most recent attempt at forming a book club. I was feeling all alone in the area. We had no family close by and I needed to feel connected to where we lived.
Once again, I was the shy new girl, but I asked everyone that I met if they would like to be in a book club started by me. To my great surprise, everyone wanted to join!
That was seven years ago. Our book club has been going strong ever since. It has been one of the most fulfilling things that I have ever been a part of. And even though people come in and out, stepping in from all walks of life, I have formed a connection with them that I never dreamed was possible. Sometimes our monthly discussions are deep, sometimes they are just frivolous fun, but they give me the fuel that I need to continue to motivate myself to accomplish all those things that I want to achieve.
It was this amazing success with a book club, and the subsequent pouring over hundreds of books, both good and bad, which reminded me of my original dream, that of being a writer.
As a test, I started a blog. It was scary at first. I was completely out of practice. My writing was halting and laborious. I struggled over every sentence, every phrase, every idea. But gradually the words began to flow again. I began to discover my voice. A new voice.
This voice is different. This voice is no longer eleven years old, pining to experience life and everything it has to offer. This voice has already experienced heartbreak, overwhelming joy, and everything in between. This voice can share the richness of dreams already attained, and hopes of new experiences yet to come. This voice has the understanding of ultimate sorrow mixed with the solace of gratitude and humor.
This voice is mine.
A year ago I was invited by a friend to join a writing group. Six ladies with the giant dream of honing our skills as writers and creating something special. I jumped on the chance! We call ourselves Six Chicks Writing. Each one of us has a completely different voice, yet we all have the same dream. We meet once a month, sharing things which we are working on and giving general encouragement and advice. It is a safe place to share and learn. I look forward to our meetings every month. They continue to give me both the fuel and the fire to work on my dream. Along with the other Chicks, I have discovered that this business of writing is a lot more work than it is fun, but for some reason we are driven to persevere. I am grateful to be in such good company for this lonely venture.
I find that my journey as a writer is still evolving. As I continue to develop my voice, I am also discovering what is inside of me. I may have substituted a laptop for my spiral bound notebook, but the end result is the same.
What leaves my fingertips is my heart.
My name is Heather.
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