“I couldn’t do it.”
“I couldn’t be that strong.”
“How do you go on?”
I have heard these statements so many times. More an acknowledgement of what we endured than an observation of perceived emotional strength.
Here’s the truth.
I couldn’t do it either. But I did, because I wasn’t given a choice.
I wasn’t strong. But my daughter was, and my love for her was greater than my weakness.
I didn’t want to go on. But I did, because I refuse to let ALS win.
My daughter, Sierra, was diagnosed with ALS on January 8, 2016. Eleven months later, I held her in my arms while she took her last breath.
She was 17. SEVENTEEN YEARS OLD.
It’s always painful to remember the details surrounding Sierra’s journey. So many painful moments I want to forget while remembering that her life was more than ALS. I still see her smile and the totally “Sierra” eye roll. I hear her giggle and that sweet, small voice that always greeted people with, “Hi, how are ya?”
Sierra was a fighter from the time she entered this world…. all 4 pounds of her! She spent time in the NICU after birth and then spent the next 12 years battling gastrointestinal issues leading to countless hospital stays and surgeries. She had some mild developmental delays, but that didn’t stop her. She loved people. She loved life. She was a champion swimmer for Special Olympics and spent most of her free time hanging out with her dog Ferris and bossing her little sister. She could always see the best in people.
In August 2015, Sierra took a fall from the front steps. Then another, about a week later. She started struggling to get up from the couch. When swim season started, she went from swimming laps in practice to barely making it the length of the pool. She started falling as she was just standing in the kitchen or walking down the hall.
Something was very wrong, and I knew it. I reached out to everyone I could think of. Her surgeon, her PCP, and the geneticist that had met her years before. I reconnected with the physical therapist that had known her for years. We were referred to a neurologist and after months of watching Sierra cry in frustration, we were hopeful for an answer. We got one. We were told that Sierra was suffering from Conversion Disorder. A disorder that causes the body to manifest physical symptoms as a result of a stressful situation and is treated with psychotherapy.
I knew beyond a doubt that this was NOT what was happening. However, we did as we were advised and saw a psychiatrist and a psychologist. Everyone agreed that something more was going on. And, as we searched for answers, Sierra was getting worse. More falling, using a walker, unable to bathe herself. Her physical therapist wrote letters to doctors. We reached out to other providers at other hospitals. We were desperate.
After months of getting nowhere, a neurosurgeon I worked with at the local children’s hospital said she would take a look at Sierra. She did. And after seeing Sierra’s symptoms rapidly progress, she admitted her for testing. She was our 10th consult. We had been searching for help for over 5 months.
The second day of her admission, Sierra had an EMG. It is one of the most vivid memories I still have – and one I so desperately wish I could erase. She cried and screamed. As I watched the doctors perform the test, I knew the look on their faces. I’m a nurse. I recognized that look.
Well, I was right. An hour later, in a small consult room on the 6th floor, I was told that my 16-year-old daughter had ALS.
“Wait, what? ALS? What is ALS? I’m a nurse, how do I not know this? She’s going to die. My baby is going to die. How do I tell her? I can’t do this. I. can’t. breathe.”
What Sierra endured over the next 11 months was something no person should ever have to live through.
Sierra spent a couple of months at home and was on bipap 24 hours a day starting in April. In May, she was admitted to the ICU in septic shock. She recovered, but never left the hospital again.
She spent the next 7 months in a hospital room, but I assure you she made the best of it! She had a circle of young, energetic nurses who spoiled her every minute of the day. They watched “Friends” with her (her favorite show… she LOVED Joey), and she knew all the drama on the floor. Sierra had slumber parties. She had weekly swimming sessions in the physical therapy pool. She giggled like crazy at those nurses and the people that loved her through those 7 months. She had fabulous blue nails compliments of her cousins (who painted them every week). She was quite passionate about the color blue so everything in that room was BLUE! The girl knew she was loved.
Despite all of those wonderful people and their efforts to make each day special, Sierra suffered. She couldn’t walk. Couldn’t move. Couldn’t eat. Couldn’t even breathe on her own. Sierra was slowly dying. And those of us who loved her stood by helpless.
When December rolled around, it was apparent that our time was getting shorter. The hospital room was decorated with trees and lights. Gifts were wrapped and plans were made for one last Christmas together. However, Sierra didn’t see that Christmas, and she never opened her gifts. Our “last Christmas” ended up, instead, being the first of many without her.
We said, “see ya later” to our girl on December 13th. Only 11 months after her diagnosis.
ALS took almost everything from Sierra, and that really pisses me off. But you know what? It took from me too. And her dad. It took away Courtney’s only sibling. It changed everything. It robbed us of our child, sibling, granddaughter, niece, cousin, and friend. It took every physical ability Sierra had and every future moment we should have had. I had no idea what this disease was capable of. I never fully understood ALS until I had a personal relationship with it. ALS is brutal. It’s a thief. ALS doesn’t care about your status, your gender, or your age. To quote my daughter, “ALS sucks.”
I am a mom. I am a nurse. Yet, I was helpless. Sierra’s death is the most painful experience of my life. It’s not just her death, but her suffering that I can’t seem to reconcile. It’s the horrifying reality that I sat next to her every day with no ability to help ease her pain, comfort her fears or take the “awfulness” away. I could not protect my child. I couldn’t even provide her with an explanation.
A year after Sierra’s death, through Project ALS, I was blessed to be united with 6 other moms who also lost their young, teenage daughters to this beast known as FUS ALS. We met after months of connecting on social media. We visited Columbia and learned about the groundbreaking research being done. We compared stories, vented our frustrations in getting a diagnosis and shared our pain. We cried. We remembered. And we vowed to keep fighting.
It has taken me a few years to get to a place where I can tell Sierra’s story. I’ve been angry for a long time. I told you that ALS took ALMOST everything. You see, ALS didn’t take Sierra’s joy. It didn’t take her ability to love in the worst of situations. It never stole her faith, her compassion, or her precious smile.
So, back to the beginning…. How do I go on? I go on by remembering that a battle is still occurring every day, and ALS is still winning – every single time. I believe, however, that we are going to win the war.
I will honor my daughter by fighting on her behalf. I will not continue to feel helpless.
ALS, you may have stolen a piece of my soul, but you will not steal my courage or determination.
Project ALS, you have my heart. Thank you, for your unwavering fight, because Sierra said it best, “ALS sucks.”