Loss. It’s a word we don’t want to hear, let alone experience. Yet we all experience it. We all know loss, not just of it. Some of us have known it on a first name basis for too many years. If we’re lucky, some of us know it only as an acquaintance for brief periods throughout life.
When I say “loss,” what comes to mind? Losing a loved one to death? Divorce or a tough breakup? Loss of a job, a friendship, a dream? Or maybe just all the socks that lost their mates in the laundry? Sorry, I had to throw a random joke in. This is a tough subject matter.
Chances are, if you’re lived long enough like me, you know loss intimately enough to define it, to know the emptiness it leaves in its wake, to know healing is hard, to know that moving forward after a great loss can seem insurmountable in the moment of grieving.
I was in a Bible study once where the question was asked: What do you think the saddest word in the English language is?
My answer? Hopelessness.
Whoever wrote that study agreed with me. Now maybe you have another word, but I’d suspect that hopelessness would be in your top ten most depressing words. Hopelessness and loss are often intertwined like a tight braid, held in place by an elastic of grief, anger, sadness, and denial.
Then where is acceptance, which can lead to hope?
My earliest memories of loss aren’t deep: a goldfish being flushed down the toilet, our outdoor pet bunny escaping and running away, attending wakes and funerals of people I didn’t really know.
For me, the loss of my innocence at an early age, something precious ripped from me, was the type of loss that affected me the most at the time. When I was eight years old, two boys in my neighborhood, barely older than me, sexually molested me. They had access to pornography. It wasn’t sex, but it was bad enough. I knew enough to know that “stuff down there” could cause pregnancy and AIDS, which had just come out as the latest big disease scare. For months, I thought I was going to die of AIDS and prayed several times a day to God: “Please don’t let me have AIDS.” Luckily, I told my parents what happened, and they went to the police. I stayed away from those boys, but it never went to court. No one was held accountable. Maybe worse than thinking I had AIDS was that it seemed like everyone at school knew my secret. Those boys told other kids. I remember feeling dirty and violated for years after the incident as I walked the halls, sometimes being asked, “Were you raped?” As a child, I couldn’t pinpoint terms like “dirty” and “violated” to describe the uncomfortable feeling of a slimy snake creeping inside me when people stared and asked rude questions, but I know now that was what I was feeling.
But I survived because of the kids who were my friends and because of my family. I had parents who loved me. I had a few good friends who stuck by my side, and as the years passed, the news of it died. Understanding more about “stuff down there,” I knew I wouldn’t die of AIDS. I stayed away from those boys as much as possible.
My next experience with a huge loss came when I was 15 and lost both of my grandmas within two weeks of each other. My dad’s mom had been battling cancer for over a year, and she lived in Kentucky, so I rarely saw her and wasn’t that close to her. While my dad and brother attended her funeral, my mom and I stayed home to be with her mom, who was in the hospital. We received the news no one wants to hear–the cancer had metastasized to her lungs (from a sarcoma on her leg the previous year), and there was nothing to be done. Even chemo would only give her a small chance. She was already 81 years old and didn’t want to go through that. Despite being given two to six months, she passed a mere two weeks later. She was at our house, so she died surrounded by family and didn’t suffer for long.
I had always known my life with my dear grandma. We visited her every Sunday after church. She had that warm voice that greeted us and those rosy cheeks and that beautiful smile. She always had candy in her purse and cookies on top of her fridge. She had her quirks from living through the Great Depression of watering down her shampoo, of saving a hundred plastic bags, and of using the smallest amount of batter left to make a quarter-sized pancake an eighth inch thick. She burned her pizza that tasted like cardboard, but her pork chops were marvelous. She spent every Thanksgiving, Christmas, and Easter with us. She went on numerous vacations with my family. She was special.
So how could I, at 15, understand what it meant to face life without one of the most important people? While she was still in the hospital, I wrote a letter to her, where I told her brave she was, how much I loved and admired her, and asked her to send me a sign upon reaching Heaven. She passed on a dreary early April day. The rain continued until the day of her funeral four days later. After we came home from an emotionally draining day, my mom called me to look out the window with her. Stretched across the clearing sky was a beautiful rainbow! I knew this was her sign to me! Just as soon as my mom and I saw Grandma’s rainbow, it faded. I had no doubts. I found comfort in that rainbow. Even though I would miss her dearly, time had helped heal the immediate stabbing loss. A scar remains on my heart, but my grandma and her rainbow would go on to create something miraculous.
I wrote her life story in a fictionalized account and published it a year ago. She has been my inspiration to write more books, to embrace what I call my heart’s song, my raison d’etre. Not only died my grandma give me hope and the possibility to write, but my daughter is named after her. Emma was a surprise child, not planned but welcomed and blessed!
Out of loss came immense possibility that became reality.
As the years went on, I would know the loss of a relationship with a boy who I once was in love with, but I would then meet the wonderful man who would become my husband and the father to my children, who I’ve been married to for 14 years.
We enjoyed several years of marriage where it was just the two of us. We got to know each other more intimately. We travelled to Italy, Hawaii, the Caribbean. We focused on our careers. We got a house together and made it our own.
The next step seemed obvious: children. I was in my late twenties. Everyone around me seemed to be getting pregnant, so I knew I was at that life stage when it was time. My husband, Erik, and I were ready…as ready as we could be.
Little did I know how hard our journey to conceive would become. Every month would come and go the same: hope that this would be the month we got lucky, only to flee with more tears and heartache at an empty womb. This trend would continue for the next two and a half years. My husband and I went through testing. They could find nothing wrong. We tried artificial insemination three times…nothing. We were told fertility drugs would only increase the chances slightly, so we held off. As 2008 drew to a close, we were on the verge of trying in vitro. Drained beyond panic and exhaustion at this point, I suggested we held off for six months and just tried to relax and enjoy life again. We had put so much pressure on ourselves to conceive that I was just done. With it being Christmas, my favorite time of year, I didn’t want to deny myself drinking some wine and the general fun of the festivities.
That Christmas was great. Pictures from the time show a true smile on my face, surrounded by coworkers, friends, and family. I stopped thinking so much about conceiving.
The New Year came. I was late. Of course, there had been a few months when I had been tricked before by this very thing. Why did early pregnancy symptoms have to mirror the ones I got when it was that time of the month? I knew the stabbing pain of loss from too many months of not conceiving, and I didn’t want to be tricked again. Why get my hopes up?
But I couldn’t wait. It was now five days past. In the bathroom at work, I took a pregnancy test. When two lines appeared instead of one, I thought for sure this was a dream. You can imagine my elation! Finally!
All those months of loss died upon receiving this amazing news. My pregnancy would continue as healthy, and I gave birth to a 7 pound boy right on his due date of September 10, 2009. Luke was a miracle baby, a baby so many friends and family, and my husband and I, had been praying for for years.
As Luke grew, we knew we wanted to grow our family more. The stresses of trying to conceive were no longer a problem because we knew we could do it. Luke was now a toddler, a happy kid who was walking and beginning to talk. A younger brother or sister would be great for him. As we wanted our kids close in age (2-3 years apart), we decided the time was ripe. On New Year’s Eve of 2010, I had a hunch I was pregnant and took a test. It was positive! The exciting thing was that this second baby would be due the same date as Luke’s birthday! We attended a friend’s party that evening, and I declined the wine. The other girls gave me knowing looks, two of whom were pregnant. We all squealed quietly.
On January 12, 2011, I miscarried. Sure, it was early…only six weeks in, but the loss of my baby hit me like a train. Loss of life is tragic, no matter how old. A mother carries her child in her for the first nine months. She and the child are literally a part of each other during that time. I think I cried more that day than I ever had. My prayers to save the child went unfulfilled. I was devastated. How could I possibly move on from this?
One thing I knew: I didn’t want to keep my loss to myself. Having a miscarriage is understandably a very private thing for many people, but suffering alone is daunting. I shared my experience with those around me, mostly other women from church and my friends. What did I immediately notice? How common miscarriages were. How many people related and understood what I’d been through. If it weren’t for these brave, strong women supporting me through this tough time, I wouldn’t have been able to heal. Of course, a woman never can forget her lost child, but with the support of friends and the passage of time, healing can occur.
My doctor encouraged me to try to have another baby after allowing my body (and mind) to heal for a month. Would you believe I got pregnant that first month? After the hardship of trying to conceive with our first child, there was no pressure. I had another healthy boy that November: Josh.
As my boys grew, life seemed to fall into a comfortable routine. I continued to stay home with Luke and Josh. The boys played together and were both generally happy kids. As Luke got older, however, we noticed that he wasn’t developing socially and verbally like other kids his age. We had already enrolled him in speech therapy soon after turning two, as he didn’t have many words. Seeing little progress over several months with therapy and Help Me Grow intervening in our home, it was suggested that I take him to a developmental pediatrician.
Luke wasn’t even three years old when we got the diagnosis: moderate autism with a speech delay. My husband and I sat there as the developmental pediatrician, a speech therapist, and a psychiatrist gave us the news. We were inundated with information in the form of tons of papers of what we should be doing as far as intervention, plans to move forward, what the diagnosis meant, and so much more that I couldn’t process it all.
I went home, determined to be proactive. I enrolled Luke in occupational therapy (OT) for his fine motor delays. Help Me Grow got us set up with the preschool in our city, and he would be receiving services there. We would continue private speech. I read through the information and tried to arm myself with knowledge, hoping that early intervention would make a difference. My son was still so young, after all. He had time to catch up with his peers.
Luke made progress, but it was slow. He, to this day, speaks in single words or short phrases to express his wants and needs. We paid a lady to come into our home to potty train him over a weekend, and it was successful…only to have that work undone a couple of years later when he regressed with no understandable reason why. We haven’t been able to completely get back to where we were with toileting.
While usually a happy kid, Luke has been prone to meltdowns, especially when overloaded due to sensory processing issues. Loud noises, crowded rooms, hunger, cold, heat, tiredness, and more can trigger a meltdown. When he was smaller, it was easy enough to pick him up and put him in his room until he calmed down.
As he’s grown, his meltdowns have gotten harder to control and more violent. He kicks, hits, pulls hair, throws thing, and pulls pictures off walls. We’ve had to remove the lamps and anything breakable from his bedroom. He is on a medication to help with the meltdowns, and while they are less frequent, they can happen without provocation. His mood can change like someone has flipped a switch. As his mother, it breaks my heart to see him like this, to know he cannot express himself like he wants to.
My biggest struggle is facing the loss of the son who I thought I would have. I will be honest. I hate autism most days. Look what it does to my son. As moms, we have these too-perfect dreams of what our kids are going to be like. Sure, we expect them to have some struggles and quirks, but a diagnosis like autism… Who expects that? I often rant and rail at God at the unfairness of it all. I have cried bitter, angry, dejected tears in the middle of the night or locked away in my closet because–let’s be honest–it’s not fair. Even yelling at God is prayer, however. Any communication with God is prayer. Knowing that helps. God can handle my anger.
Soon after the diagnosis, after a few weeks of trying to hold it together and be proactive, depression grabbed hold of me and pulled me down. I took out my anger and hurt on those closest to me. Sadly, from time to time, I have turned to this dark place because sometimes I just cannot take it. I feel unqualified, underprepared, unable to raise a special needs child. Did God really think I could handle this?
I have been through plenty of times of loss in my life, but those losses have either resolved themselves or have found a way of healing. This time, this loss is ongoing. There’s no end in sight. This is lifelong.
So what do I do? How do I choose to face this epic loss and embrace a new possibility? Hard truth: I embrace the loss of my picture-perfect dream and truly embrace the boy who is my son. Because he is my son. He is a person worthy of love and deserving of understanding. No diagnosis changes a mother’s love for her child.
If it weren’t for Luke’s autism, I would not have met many other precious people in my life. I have cried with other moms “who get it.” I have hugged and been their source of encouragement, and they have returned the favor. Other people have been strong for me when I couldn’t be. My parents, my church, my friends…they are the true heroes here, not me.
And God. I cannot understand why Luke has autism, but I believe God works good from the bad. My heart and mind have been opened by raising a special needs child. I believe I am more compassionate and understanding of others who have various diagnoses. I believe we all will go through some sort of diagnosis at some point in life. It’s all part of living. God holds us and sustains us through, often by using other people in our lives to carry us when we cannot walk.
Whatever loss you’re facing in your life, I ask you to take some time to try to see a new possibility in it. Every experience is a chance to grow, to learn something, to continue in hope.
That is a much better place to be than alone and suffering in your loss. Loss is just as much a part of life as gain. I believe there is much to be gained in loss–hope for tomorrow.
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I came to the hard realization that even though part of me wanted better or more, I must not have wanted those things badly enough.
I’m not entirely sure how, or when, or even why, but somewhere along the road of my 30s, I came to understand a deeper truth: I can’t change the past or my circumstances, but I can change how I look at them.
