Today I’m thrilled to share a guest post from Michelle Lewis. Michelle is my second cousin and we grew up in the same small town. Last Friday, Michelle was the speaker at the 20th Annual Tipton Prayer Breakfast. I wanted so badly to attend, but Gage’s therapy schedule and an IEP meeting got in the way. Luckily, Michelle shared video of her speech, so I still had a chance to take in everything she had to say. I’m so glad I did! Her words, which she’s given me permission to share here, are filled with so much wisdom. I had no doubt they would be, as Michelle’s been offering me great advice personally for the past few years. A few months before Gage was born, Michelle became a mom to her daughter Eliana, who you’ll learn more about below. On my journey with Gage, Michelle was one of the very first people to speak to me in a way that made me feel seen and understood. She was truly a lifeline for me during a dark and difficult time in my life. I’ll always be grateful for that. My hope today is that you’ll get as much out of Michelle’s wise words as me. Below is her speech from the Prayer Breakfast, and you can also find the video here.
Thank you for allowing me to speak to you today, it is truly an honor.
While most of you probably know who I am, I wanted to share a small bit about myself so you can understand just how spectacularly ordinary my life was. I was born and raised in Tipton. After high school, I earned my degree from State Fair Community College, then transferred to Northwest Missouri State University, where I received my teaching degree. A glutton for punishment, I went back to school a few years later and earned my Master’s. I have been a high school social studies teacher in Pleasant Hill, Missouri since 2006. In 2011 I married my husband, Chris, and 2 years later we welcomed our daughter, Eliana, into the world. At this point you are probably thinking “why did they ask this lady to speak today”, she seems pretty boring.
Before Eliana, I lived a wonderful life, but admittedly, it was an ordinary life, one without much purpose. This life I knew vanished on New Years’ Eve of 2013, when Eliana entered the world as a 4lb 7oz diva. Eliana would spend the first five months of her life in the Neonatal ICU at Children’s Mercy Hospital, suffering from uncontrolled epilepsy and other medical complications. While in the NICU, Eliana would receive a genetic diagnosis of SCN2A-related Epileptic Encephalopathy. My life had just become EXTRAordinary.
One of the very ordinary things about my life is that I love quotes. I have inspirational quotes posted throughout my classroom and have multiple Pinterest boards dedicated solely to quotes. Today I will be sharing with you several quotes that I have tied to lessons that I have learned throughout my new, anything-but-ordinary life as a special needs parent.
Lesson 1: Just Keep Going
“We must keep going. And so, if you can’t fly, run. If you can’t run, walk. If you can’t walk, crawl. But by all means, keep moving.” –Martin Luther King Jr, 1967 speech at Glenville HS in Cleveland, Ohio
I have never been a fan of winter; every year while in the middle of another brutal Missouri winter like we are having this year, I question why I still live here. January of 2014 was no different, it was bitter cold and unbeknownst to us, the beginning of what would be a 5 month long stay at Children’s Mercy Hospital. By the end of January, almost a month into our stay, we still did not have answers to why Eliana was having hundreds of seizures a day despite multiple anti-epileptic medications and the stress was starting to get to Chris and I; we began to question how we would ever get through this seemingly endless and terrifying experience.
On January 21, during my daily vigils at Eliana’s bedside, I happened on a quote someone had posted on Facebook in honor of Martin Luther King Jr Day. The quote was from a 1967 speech he gave in Cleveland. Dr King very eloquently said: “We must keep going. And so, if you can’t fly, run. If you can’t run, walk. If you can’t walk, crawl. But by all means, keep moving.” I vividly remember reading this quote and feeling like it was meant just for me; to encourage me through this difficult time.
Just a few days later, we would receive earth-shattering news: Eliana’s genetic diagnosis. Even though not much was known about SCN2A at the time, the prognosis was not good. We were told by a genetic counselor that she would likely not live to see her second birthday and if she did, her quality of life would be very poor. Diagnosis Day, sometimes referred to as D-Day in special needs circles, was the worst day of what would be the longest winter of our lives.
Since that initial genetic diagnosis, numerous other diagnoses have followed. One of them being Dysautonomia, which causes Eliana to have an overactive sympathetic nervous system. If you don’t know, the sympathetic nervous system is responsible for your “fight or flight” response; this is our body’s physiological response to stress. For Eliana, when her body encounters stress, like a tummy ache, her body jumps into “fight” mode and cannot get out of that mode without medical intervention.
When staring down adversity, much like Eliana’s sympathetic nervous system, we have two choices: Fight or Flight. We can run from the threat; try to avoid pain and survive to live another day. This flight response can prove quite useful when dealing with temporary threats; like this past summer when I was cleaning out our long neglected garage and stumbled upon a hive of very protective bees. I choose that day to run; I got away from the threat as quickly as possible and lived to clean another day.
Unfortunately, many threats in our lives are not temporary; they are long-lasting and life-altering and that flight response simply won’t do. The other choice we can make is to face the threat head-on: to fight. This option, which opens us up to the possibility of pain and potential injury, also provides us with the opportunity to weaken or even eliminate the threat. As the poet Robert Frost said “the best way out is always through.”
I must admit, there were times in the early days of being in the NICU that I wanted to run from the threat of an uncertain future and daily life-threatening crises. Many evenings, when we should have been snuggling Eliana in the comfort of our home, enjoying our newborn baby, we sat in an empty nursery, crying and grieving the life that we had meticulously planned for our new family, while our daughter fought for her life in a hospital across town. Early on, Chris and I made the conscious decision that we must face this threat head on. That while we might want to run and hide, we must stand and fight. So every morning, we woke up, got dressed and made the trek across town to Children’s Mercy to spend the day fighting with Eliana. At this point we were just crawling (and we crawled for MONTHS), but we were still going, still moving forward, still fighting.
So, no matter how cold the winter may be or how terrifying the threat may seem, in the immortal words of Dory, a small blue fish, “just keep swimming, just keep swimming”.
Lesson 2: Accept Help
“It takes a village to raise a child” –African Proverb
While we were slowly moving forward, I quickly realized how isolating our new journey was going to be. Research has shown that people who have unique experiences tend to report less positive feelings and a sense of exclusion compared to those who had shared, ordinary experiences. This is the reality for special needs families–because our daily lives are so different from a typical family, many times it is hard for others to relate to us and for us to relate to them. When you compound this with all the other obstacles we face on a daily basis, maintaining relationships becomes all the more difficult and the feelings of isolation start to settle in.
I believe at some point in our lives we all experience a degree of isolation; a time where we feel detached, like no one could understand what we are going through. For some that could be as an angsty teen trying to navigate social groups and find where they fit in. For others the disconnect may come as an adult trying to cope with an empty nest or the loss of a loved one. I have discovered that while it may seem like you are alone in your situation, there is always someone who can empathize, there is always someone willing to help, you just have to be open to accepting the help when it is presented.
An African proverb says that it takes a village to raise a child. This implies that we can’t do everything ourselves, that we must be willing to accept help. This is not something that comes naturally to me. For the five months Eliana spent in the NICU, I was granted extended leave from work so that I could be with her. While I was fortunate to have an employer that was willing to grant me this leave, it also meant an extended time without pay. Knowing the potential financial burden we were about to experience, my village stepped in to help. I may have been 31 years old, married and living in a different city, but in the eyes of the Tipton community that helped to raise me, I was just a child from their village that needed help. Chris and I were truly humbled by the outpouring of love and support we were shown from this amazing community but it was very difficult to accept this seemingly undeserved kindness.
I think from any early age we all desire independence, like the toddler who insists they can do everything themselves and the teenager who ignores sage advice from their parents because they believe they know it all. I was no different; I believed that I should be able to care for my child and continue in my roles as wife, teacher and coach without any extra support because that is what mothers are supposed to do.
No matter how much I thought I could do it all, I was quickly shown that I was wrong. I was immediately denied the chance to do even the most basic tasks expected of all new mothers like holding, feeding, bathing, even dressing my child. Because of Eliana’s condition early on, these tasks were carried out by highly skilled nurses and medical equipment. I did not get to hold Eliana until she was 3 days old–I have been making up for those 3 days for the past 5 years.
Not being able to adequately care for my child, made me feel like a failure, and as our hospital stay went from days, to weeks, to months, I realized that other roles that I was used to doing were also being challenged. I had to take an entire semester off from teaching, I would no longer be able to coach and how could I juggle all this and still be a good wife. So when my village–the Tipton community, my co-workers, family and friends–started to offer help, I struggled to accept it, because in my mind accepting help was showing weakness and was forcing me to acknowledge my own shortcomings.
Shortly after we got home from the NICU, I discovered an online Facebook Community that was started by a handful of parents whose children suffered from the same genetic change as Eliana. Earlier I mentioned that research has shown that people who have unique experiences, like we were having, tend to feel isolated and have an increase in negative feelings. But conversely, research also shows that positive feelings can be amplified through shared experiences. Researchers found that people who shared the act of eating a piece of chocolate together, with another person, reported enjoying it more than those who ate it alone.
Discovering my SCN2A Family meant I was no longer eating my chocolate alone–I was now sharing my experience with people who understood and could offer me unique support that I couldn’t find anywhere else–my village had grown. Over the last 5 years, that village has become more like a booming metropolis, growing exponentially to include countless doctors, nurses, teachers and therapists who have all helped to fill in the areas were I am lacking, to make our lives complete.
Through this journey, I have come to the realization that accepting help is not a weakness; it actually takes an immense amount of strength to not only confront your shortcomings but to then allow people to share in your experience. So, whatever you are battling, don’t do it alone. Find your village and eat your chocolate together.
Lesson 3: Let go of expectations
“Comparison is the thief of joy” –Theodore Roosevelt
Speaking of eating chocolate, when I was pregnant with Eliana, four of my colleagues were also expecting children, with our due dates landing within 4 months of one another. While some were questioning what was in the water at Pleasant Hill High School that year, I was busy making plans for Eliana and her future. Plans were made for her to attend a local babysitter that some of my colleague’s children would also attend–So in my head, Eliana already had a group of friends and she hadn’t even arrived yet–I was killin’ it as a parent. Like all parents, I was just envisioning our future, but in looking ahead, I was also creating expectations; expectations of what our lives would be like, who Eliana would become. But to paraphrase the Scottish poet Robert Burns, …the best laid plans often go awry.
In the five long months we spent in the NICU after Eliana’s birth, in an effort to try and fill the hours while I sat at Eliana’s bedside, I would scroll through social media. As I scrolled through Facebook, weeks after Eliana was born, my first expecting colleague welcomed a healthy baby into the world, then a few weeks after that, another colleague welcomed a healthy child into the world, and this continued until all four of my colleagues had uneventfully welcomed healthy children into the world. This should have been a time filled with great joy, but as I watched my colleagues children grow and reach milestones like cooing and laughing and sitting independently, I was watching Eliana have hundreds of seizures a day and being confronted with the reality that she may never get to go home. I found myself in a very dark, uncomfortable place–a place where my expectations for my daughter and her future weren’t being met and I was unfairly comparing her to these children because of those expectations I had created. Teddy Roosevelt once said that “comparison is the thief of joy”. Without realizing it, comparison was stealing joy from my experience as a new mother; I couldn’t fully appreciate Eliana and our journey because I was too consumed with what we would never have and what she would never be.
When the Bible was originally translated from Hebrew to Greek, there were four words that were used to describe the English word “love”. “Eros” to describe romantic love, “Philia” to describe brotherly love, “Storge” to describe familial love, and the fourth and most important type of love,“Agape”. “Agape” is a love that is selfless and sacrificial, a love that is unconditional. Many equate it to the love Christ had for his Father and for humankind.
Pope Francis embraces the concept of agape love when he addressed the issue of giving to the poor. His message was simple: Give to the poor and don’t worry about it. Many people justify not giving to the poor because they might squander the money, but Pope Francis argues we should simply give to those in need and be grateful that we have the ability to do so. This is giving love unconditionally, without judgement or expectation.
Five years in, I am finally at a point in our journey where I can say that I am letting go of the unrealistic expectations that I had created for Eliana, and I am replacing them with open-ended possibilities of what she might become. By removing those unfair expectations I am now free to love Eliana unconditionally and this has been transformative for me; I can now find joy in our experience because I am no longer focused on what she is not and what she will never be.
So, try not to get caught up in what someone else has or what you don’t; accept others for who they are, not what you think they should be. Once you begin to shed those expectations, you to can open yourself up to both give and receive unconditional, agape love….
Lesson 4: Embrace your experience
“The wound is the place where the light enters you” –Rumi, 13th century Persian poet and scholar
Letting go of expectations is a process; a process that I am still navigating. There are days that those expectations creep in and make an unwanted appearance. I think this is part of the grieving process that every special needs family goes through. Even though Eliana is still very much alive, the expectations that I had created about who she would be were never viable, and I find myself on occasion, grieving that child who never was; like when the genetic counselor shared our bleak prognosis, when attending “well-child” check-ups at the pediatrician and having to answer “No” over and over again when asked if Eliana was hitting milestones, or while in the middle of a 2 week stay in the PICU when I had to sit and watch through a glass wall for hours as the family across the hall says goodbye to their child for the last time.
I think experts are wrong when they say that the grieving process comes in stages. To me this implies that that there is a beginning, middle and end to grieving. I think a more appropriate term is “waves” of grief. I know for me, my grieving comes in waves, it is intermittent and unpredictable. Sometimes these waves are small and fleeting, other times they are large and lingering. And like waves crashing into rocks along the shore, each time a small bit of erosion takes place, reshaping my experience.
There are many aspects of our journey that are painful and at times hard to bear, but I cannot control these things, just like I cannot control when my grief decides to reappear. But what I can control is how I respond to these situations.
The English philosopher, George Henry Lewes said “the only cure for grief is action.” I have tried to make this my motto. Four years ago I decided to embrace our experience and try to find some way to pay forward all the kindness that had been shown to our family. We decided to start a yearly golf tournament that would raise funds and awareness for various worthy causes. Three years ago I was approached by the FamilieSCN2A Foundation and asked to become a board member and help them achieve their vision of a finding a cure for SCN2A disorders.
The Eliana’s Force Golf Tournament and my work with the FamilieSCN2A Foundation are actions that I can control and in my own small way, I can help others navigate through their hardships, while helping heal the wounds my own have created. By embracing my experience, I am allowing the waves of grief to shape me into a better version of myself.
The Persian poet and scholar Rumi said “the wound is the place where the light enters you.” No one can escape grief, pain and hardship; we all experience them on some level, at some point during our lives–we all have wounds. So if these things are inevitable, we must be willing to embrace those experiences, to let the light enter, so that you can transform into something better.
Conclusion
Before Eliana I had a wonderful life, but I now know that it was a life unfulfilled. Eliana and our special needs experience has transformed my life from ordinary to extraordinary; it has shaped me into a better version of myself.
Life has a way of testing us; along with all the happiness and joy, it also brings pain and hardship. My hope for you is that when you encounter times of trial, that you remember these 4 lessons:
—No matter how difficult it may seem, just keep going
–Seek out and find your village and accept their help when offered
–Don’t allow unfair expectations to limit your love or squash your joy
–Finally, embrace what you are going through so that you can learn from it and become a better version of yourself.
Thank You.
Michelle and Eliana are both awesome and inspiring individuals. Michelle mentioned her involvement with the Families SCN2A Foundation. They are working hard to find effective treatments and a cure for SCN2A disorders. If you’d like to support the good work they are doing, you can find all the details on ways to give here.